InJoy Blog

If ...

2012-01-26T01:50:00.000-06:00

If Stross were not my son, I would be a different person.
I hesitate to think of that woman and what she might have become.
What purpose would that serve?

I remember her youth.
Even her young adulthood.
But she never matured -
that young woman some thought wise beyond her years.
Never matured.

And yet she befriended me -
The me I recognize this day -
This imperfect me who is closer to perfect than she.
Whatever perfect means.

She remains my friend - still - amid perfectly imperfect days.
She knows I am well acquainted with imperfection.
In fact, perfectly pleased with its discord.
Its unruly unrest.
Its unsettling, unsatisfactory, undeniably flawed pronouncement of life.

She knows I sometimes I grow weary with imperfection's persistence,
Yet never weary with its rich contrast - its bold defiance of the wanting-to-be-perfect life.

Life.
Imperfect life.
It is imperfect.
Of course it is.
How perfect is that!
And what a mature pronouncement for an imperfect person to make.
(And how immature of that person to say so.)

I wonder if she - the one who never matured - would think it immature too.
She likely would.
In the way someone with perfectly framed thoughts regards imperfection and pronouncements about what is known or unknown about it.

Knowing but not knowing.

Imperfection.

Life.

That's what I think on this day.

Epiphany - Let There Be Light

2012-01-13T00:25:00.000-06:00

I was a young teen when I had my epiphany about Epiphany, the Christian holy day that celebrates God’s revelation through the humanity of Jesus Christ.

In my enlightened state (for the season of Epiphany celebrates light entering a darkened world) the term stopped being a word that I glossed over some Sunday morning shortly after Christmas and became one edge of the prism I use to view what happens in the world.

Epiphany – a term that can cause confusion, wonder, amusement and more – is the destination of Advent and the whole point of Christmas. Yet few know what it is, and many who do, don’t know what to do with it - or about it.

Neither do I, really. But I like the way it shapes my prism. So I leave it at that.

God personified in the person of Jesus – God with human skin.

This witness of walking divinity transformed how I see those formed in the image of their Creator. And then, as I shared in Involuntary Joy, becoming Stross’ mom sharpened that focus. In fact, his life became another edge of my prism. Stross has forever shaped how I see the divine at work in human life.

Yet it’s my developing understanding of Epiphany – for it continues to develop day by day – that serves as an illuminating laser point of divine light.

Holiness in a dark world.

Hope in the midst of helplessness.

Joy after sorrow.

Promise of purpose amid messy days.

It’s how I hold onto childlike faith. The faith I was born into and continue to hold as holy.

My parents chose this faith for me in the beginning. And for my first Christmas, they gave me – their four-month-old firstborn – a tangible expression of faith. Poor enough to be practical, my 20-year-old mother and my 21-year-old dad gave me the first four figurines of a nativity: Mary, Joseph, Baby Jesus and an angel we named Gloria. My father then fashioned a home for them by taking apart the boards of a wooden peach crate and reassembling them in the shape of an A-frame manger.

That was my first Christmas present; and each year after that until well into my teens, my parents added another piece to this holy family scene. A donkey, a cow, shepherds, three magi, camels and sheep. When the crèche became too crowded for comfort, they stopped. But each year, they set out all 20-some pieces on an end table in my childhood home until several years ago, when they gifted the entire set to me once again. This time for my safekeeping.

Where the crèche is concerned, I don’t keep Epiphany in the strict sense. I don’t hold back the magi and camels until January 6, the 12th day of Christmas. But I leave the entire scene on display until that day at least. This year it was out four days more just because I like seeing it there.

It reminds me I was born from love to young parents who had little to share but love. It also reminds me whose I am and that I – like the one who came as light – is called to be light in a dark world.

Luminous, reflective, refractive ... light!

Aha and amen. May that indeed be so.

Crèche at the Courthouse: What is the point?

2011-12-27T01:20:00.004-06:00

Restraint is not a quality I exhibit well. The fact I am writing this now – after Christmas – is proof that I have a measure of restraint. But the holiday is over. Waiting is done.

I have wanted to write about seeing the nativity on our courthouse lawn since a few weeks ago when I drove past and saw it there. It sits where it sat last year. And one more Christmas season has brought one more year of people asserting they have the right to place it there.

I am not certain when this practice began; however, I am certain I am not alone in my annual distress over it.

I am also certain that I am not the only person who believes it is inappropriate to place a religious symbol that favors one faith expression on public property that is to serve all citizens regardless of faith. At least that’s the indication I got from others during various conversations these past few weeks. I am also confident that those who share my view feel it is futile (or folly?) to complain or to do what I nearly did a few weeks ago – write a letter to the editor of the local paper. To a person, each friend in my Bible study of 14 years advised against a public display of discord.

“What will that do, Joy? What do you hope to accomplish? You will only tick people off.”

There are historical grounds for their predictions for that’s what happened in 2007 when someone – not me – complained and alerted the ACLU. People got ticked off that a complaint about the crèche had been filed, yet as a result of the complaint county officials removed the crèche, donating it to the local ministerial association.

Undaunted, a group identified as “Christian Congregations of Winnebago County” affixed a sign to the manger and placed it back on the lawn. This time – because of the sign – the crèche was able to remain as a sponsored placement, enabling the county to adhere to our government’s separation clause.

Details of what happened in 2007 and also last year when the crèche was left on display for three months after Christmas are recorded here (Winnebago supervisors say Nativity scene issue is settled, ACLU disagrees).

Four years later, these questions remain: What is the point of having a crèche on a courthouse lawn? Why does our county need to display a crèche at Christmastime when not even all of the 26 Christian churches in the county do?

I anticipate this answer: To celebrate Christmas and the birth of Christ.

I also anticipate this response: If people of other faiths want to place something on the courthouse lawn, they are welcome to do so.

But I doubt that.

I doubt that Wiccans, Buddists, Muslims, Jews and others are truly welcome to display items of faith on the courthouse square in recognition of their high holy days. I also doubt that members of those faiths want to do it. Overt displays are typically part of the Christian witness and not usually the way that people of other faith expressions publicly share.

Government holidays, retail sales promotions tied to holidays, movies and television shows with holiday themes – even boycotts of businesses accused of not honoring holidays with the respect some believe appropriate. In our nation, Christians have a monopoly on all of the above. County governance is no different.

According to a 2000 report on Congregations and Membership in the United States, only 1 person in Winnebago County named a faith expression that wasn’t aligned with Christianity. The faith listed was Baha’i. Full report: Congregations and Membership in the United States 2000. Nashville, TN: Glenmary Research Center.

Yet, I know people who have lived or who currently are living in my county as permanent residents that claim Judaism, Buddhism, and atheism as their faith expression. (And I don’t mean to offend atheists by labeling atheism a faith expression.) Evidently these individuals fell outside the scope of such a report.

But what would it matter? Those who live in this county are aware they live in Christian territory. Should there be any doubt during the month of December, all they need to do is look toward the courthouse. The lighted crèche marks the courthouse lawn for Christians as effectively as our neighbor’s dog has marked our lawn.

As a person who spiritually identifies as a Christian, I am grieved that plastic figurine symbols have displaced the good news they profess to proclaim. Being a Christian has become the right to display a crèche on a courthouse lawn rather than individuals displaying acts of mercy and grace and unconditional love – behaviors that should be the most reliable identifier of a person’s chosen belief.

Author and blogger Rachel Held Evans named this inclination to stake out Christian turf through overt signs of celebration as “entitlement.” This week she reposted her December 8, 2010, blog “Blessed are the entitled?” Her thoughtful dispatch provides context for her provocative conclusion:

Don't tell anyone, but sometimes I wonder if the best thing that could happen to this country is for Christ to be taken out of Christmas—for Advent to be made distinct from all the consumerism of the holidays and for the name of Christ to be invoked in the context of shocking forgiveness, radical hospitality, and logic-defying love. The Incarnation survived the Roman Empire, not because it was common but because it was strange, not because it was forced on people but because it captivated people.

Let’s celebrate the holidays, of course, but let’s live the incarnation. Let’s advocate for the poor, the forgotten, the lonely, and the lost. Let’s wage war against hunger and oppression and modern-day slavery.

Let’s be the kind of people who get worked up on behalf of others rather than ourselves.

That’s exactly it.

Let’s not fight for our right to display a crèche on the courthouse lawn. Let’s become the good news the crèche represents.

Figurines are figurative. Faith is real. Faith is love in action. It has nothing to do with a crèche on public display unless you are feeding the hungry from its manger or sheltering the homeless in its shadows or advocating for those of all faiths alongside the angels of your own.

Only 11 months remain before the advent of Christmas 2012. I need to get busy. If I don’t become the change I seek, I will be but a noisy gong or a clanging cymbal; for if my faith is real, I must move beyond symbols as well.

So here’s to a new year filled with provocative questions that are answered through acts of abundance.

Let’s start with this one: What do I have that can be given to someone in need?

And guess what? Good news. No restraint is required.

Hope for the Soul

2011-12-09T22:46:00.001-06:00

In August I participated in a Circle of Trust Retreat led by staff from the Center for Courage and Renewal. The mission of the center, founded by Parker Palmer, is "to nurture personal and professional integrity and the courage to act on it." They accomplish this by leading activities that help people reconnect who they are with what they do. It's an individual activity done - amazingly - in the midst of others who are busy doing the same thing.

I had hoped my time at the retreat would be as as productive as a deep house cleaning. Instead, I took first steps toward such. I had not considered the condition of my soul and its lack of readiness until - in the noisy solitude of thought - it tentatively presented with dings, dents, and stains. Fully intact, yet worn and tired.

It was wounded. It had been waiting. It needed more than a rest and refuel.

I had to wrestle with the concept of a chronically wounded soul - a life lived amid conditions so overwhelming that role and soul exist in a perpetually entwined state. Not life-giving like the interwoven roots of giant sequoias but entangled like a sapling grown into barbed wire.

Attempting to diagnose the severity of my woundedness became my priority.

Had I been wounded beyond my capacity to heal? Had my soul been so constricted that it could never again fill with regenerative life? If I was able to heal, did I want to?

No. No. Yes.

A soul - I discovered - is resilient beyond a human's capacity to comprehend, but it needs help.

Time and tenderness.

Affirmation.

Encouragement.

This week encouragement arrived in the form of a card from the Center for Courage and Renewal. Tucked inside was a quarter-fold paper with a piece by Victoria Safford taken as an excerpt from "The Small Work in the Great Work" in The Impossible Will Take a Little While: A Citizen's Guide to Hope in a Time of Fear edited by Paul Rogat Loeb, © 2004.

I read it word by word, feeling the crescendo of a wildly exclaimed "Yes!"

Victoria Safford knows my soul. She understands the loneliness of truth-telling and the paradox of joyful struggle.

She gets me. See sees what my soul has seen and what it hopes to see again.

I offer her words to you. May they resonate with truth and joy and light. And, in them, may your soul - like mine - claim hope.

Our mission is to plant ourselves at the gates of hope-not the prudent gates of Optimism, which are somewhat narrower; nor the stalwart, boring gates of Common Sense; nor the strident gates of self-righteousness, which creak on shrill and angry hinges (people cannot hear us there; they cannot pass through); nor the cheerful, flimsy garden gate of "Everything is gonna be all right." But a different, sometimes lonely place, the place of truthtelling, about your own soul first of all and its condition, the place of resistance and defiance, the piece of ground from which you see the world both as it is and as it could be, as it will be; the place from which you glimpse not only struggle, but joy in the struggle. And we stand there, beckoning and calling, telling people what we're seeing, asking people what they see.

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Boys, Baseball and Barbie Dolls

2011-12-06T23:31:00.005-06:00

The summer my dad’s high school baseball team went to the state tournament, I learned that high school boys didn’t act like the men I believed them to be. I have my Barbie® dolls to thank.

I was five years old and had my Barbies in various states of undress (none fully dressed) on the floor of our living room when our doorbell rang. I looked up and saw through the glass of our large, lace-curtained window the figures of about three or four high school-aged boys, all wearing baseball caps.

They must be my dad’s players, I thought.

My mother, making the same assessment, headed to our front door while calling an announcement to my father that he had “guests.” Too young to adequately interpret the slight inflection in my mother’s voice as she said “guests,” I got excited that my dad had some other men coming to visit our home. They were the young men I watched playing baseball when my dad coached, and from what I could tell, they acted just like the Dodgers my dad liked to watch on TV. I also understood them to be grownup versions of the boys I played with during recess and in our neighborhood after school.

A pint-sized feminist of the 70s with a tinge of tomboy, I found boys absolutely fascinating as future men. I loved competing with them on the same kickball team or against them in foursquare. I especially liked the challenge of their counter play and their mysterious mannerisms.

I already knew I wanted to marry a boy one day – but a day long into my future - after I had learned to bring home bacon and how to fry it in a pan. I had even picked out the kind of boy I would like to marry: a real-life version of astronaut Tony Nelson on “I Dream of Jeannie” or the real-life Bobby Sherman or David Cassidy should either of those gentlemen be willing to wait for me.

With that doorbell ring, I now had high school versions of men almost inside my home. The last place I wanted to be was sitting on the floor playing with Barbies when my mother opened the door to greet our testosterone-driven visitors.

I only had time to scurry down our hallway, taking sanctuary just inside my bedroom doorway – the closest position I could maintain while listening without being seen. I also knew I would be able to peek unnoticed from there. So, after my mom left them alone in our living room to see what was keeping my dad, I peeked.

The young men filled our couch while one perched in a chair. They looked uncomfortable. Nervous. Then they saw my neglected Barbies, and one of them quietly said something that made them all laugh.

I was horrified.

Then the one that had said something picked up a naked Barbie, grabbing her by her stiff, tight thighs. He rotated his wrist so that she appeared to dance in front of the boys on the couch. The other boys started to giggle and talk funny, and one more Barbie was picked up by a boy on the couch, and he forced the Barbies to pose breast to breast. Then they spread the Barbies’ long, unbending legs.

I didn’t want to keep looking, but I was afraid not to. What was happening to them- the Barbies and the boys? Why were they laughing? And why did I feel that something naughty was going on?

I was scared for those Barbies and their Barbie friends on the floor. I was also scared – somehow – for me.

Those boys were not the men I thought. Or were they? Is this what grown boys were like? If so, they had a dark side I had not encountered during kick ball or foursquare.

I thought about stepping into the hall to see if they would act like the men on the ball field again. I wanted to rescue my Barbies – to see if I could make the boys stop. But fear outweighed the passion that palpated my heart.

I remained frozen. Fearful.

The boys heard my dad coming the same time I did. When they quickly dropped the Barbies, my fears took on fuel. Those boys didn’t want my dad to see what they had been doing. It had felt wrong to them too, and yet they had done it anyway. That left me more afraid.

I stayed in my bedroom while they talked to my dad, my heart beating faster than it had before. I thought about my abandoned Barbies, wishing the boys away. When they finally did leave, I headed straight to the living room and dressed each Barbie in a complete outfit – dress, shoes, hair accessory. Each ensemble restored a bit of my courage. I wanted my Barbies to know I was sorry. I hoped for inanimate forgiveness.

With the last artificial woman fully clothed, I approached my dad – only 10 years older than his players – with accusations of abuse. He heard how I had watched the boys manipulate my dolls with as much detail as I could muster. Then he looked at me, and then at the ground, and then back at me. I knew he was trying to think of words to say. I couldn’t understand why it took so long.

His slight pause held my anger. His chosen words dissected my passion for justice into measured pieces.

“Boys can be like that,” he started. “I’m sorry.”

Then he shared more words about boys and how they get goofy about girls and girl things. He acknowledged that what his ball players did was not right. But somehow I understood my dad didn’t regard what they had done as punishable. He wasn’t as worried about those boys and their futures as much as I was. Or was he? I couldn’t tell.

Maybe he was worried about something else. Maybe my dad – in that moment – began to worry about the grown up version of me. Now a parent myself, I can imagine that as possible.

Girls playing with dolls. Boys playing with dolls. Girls playing with boys who played with girls as if dolls.

Maybe Tony Nelson had a dark side too.

Fortunately, I never had to find out. My high school suitors always behaved as the gentlemen I aspired them to be, and my husband – even as a future husband – far exceeded my Barbie-shaped imaginings of life with a husband and a home of my own.

I now have two sons - boys of my own to raise. One whose notions of marriage may forever stay in the idyllic place I resided prior to the Barbie harassment incident and another who is the same age of the ball players who committed the Barbie abuse. The oldest is a man-boy, locked by disability in a place that will hold him forever young. The youngest is but a few years from becoming a man, as near as I can tell.

I remain uncertain about manhood – how and when this fascinating phenomenon occurs. I have heard it can happen to a boy when in he’s in high school or maybe only begin then but not take full affect until later. It doesn’t happen the same for each person born male and, for some, it might never happen at all.

Some boys cannot grow up.

Some boys choose not to.

Some boys grow into men at the cost of their childhoods.

Some boys grow as men by maintaining the best of childhood.

Some boys fight their way into manhood.

Some boys attain manhood despite themselves.

I still wonder if the boys in my parents’ living room that day became the men I had believed they were. I want to believe they did. And I want to believe that they got married and had little girls who played with Barbies, and that they helped those little girls dress their dolls when the outfits were unruly, using the utmost respect and tenderness.

That’s what men who once played a gentlemen’s game would do once they had grown past childish games.

At least that’s how I imagine it in my grownup Barbie world.
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The Forest Theater's Last Show

2011-12-01T01:49:00.009-06:00

Our family said farewell to a community friend tonight: The Forest Theater. For 57 years, the Compston Family made it possible to watch first-run movies at a price everyone could afford. When we moved to town 18 years ago, admission was $2.50 per person and popcorn was $.50. Tonight our tickets were $4 each, and Gary Compston, the theater owner, was handing out popcorn for free.

In many ways, Gary was the theater. He set the tone - a collegial, neighborly atmosphere where he soon remembered your name and maybe even your usual order at the candy counter.

Going to a movie at The Forest Theater meant you would automatically attend with friends, because people you knew were waiting to pay for a ticket with you, standing in line for popcorn and candy with you, and sitting in seats around you as a small child (who Gary had chosen from the concession line earlier) started the movie by pushing two buttons inside the theater office. When the ads for local businesses began showing on the screen, you remembered why the town now felt like a hometown.

What I'll remember about The Forest Theater:

• Driving by the theater during the day to remind myself of what would be playing there that night.
• Being able to enjoy a date night for less than $12, movie munchies included.
• Being able to walk to and from that date night so the magic lasted just a bit longer.
• Listening to the change machine and watching the 50-cent pieces roll down its slide after handing Gary $3 for a $2.50 admission.
• Sitting in the cry room with my infant son, wondering why all movie theaters didn't provide such a gracious spot to watch a movie with a restless or tired little tyke.
• Hearing Gary tell patrons with a large concession order how to carry the items so they won't spill.
• Hearing Gary caution patrons not to spill when it seemed he doubted their ability to carry items to their seats.
• Joking along with Gary every time he told me I owed him $40 or $50 for the $16 admission for our family entourage.
• Watching children and youth (mine included) fight for spots in the front row.
• Listening to the paper popcorn bags nearly drown the beginning sounds of movies with quiet opening scenes.
• Listening to Gary and Mark talk after the show about changes occurring in the movie industry because of the digital revolution.
• Watching my oldest son glide down to his spot in the front row as his wheelchair coasted into position, and then rhythmically push his tires when it was time to ascend the full length of the aisle's incline after credits had finished.
• Wondering what six movies would be on the next flyer to grace our family refrigerator.

Thanks for the memories, Cathy and Gary Compston. You missed taking a lot of vacations so we could escape for a few hours - week after week, month after month, year after year. May you enjoy each of those trips you have planned as a way to launch into retirement. You have left our community quite a legacy. I hope someone dares to step forward and carry that legacy into our community's future.

You will be missed.

You will not be forgotten.
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Note: I hope the video helps you feel like you were there on the last night. I particularly enjoyed having Gary show off the projector room one last time as the last movie rolled. Seemed incredibly historic. With the advent of digital film, that machine will likely never roll a film again. I loved hearing the tick of the reels. Pretty poignant.

Oh, Poop ...

2011-11-22T16:02:00.002-06:00

As regular InjoyBlog readers know, I'm not in the practice of using words like "poop" in the title of a blog. But I'm challenging myself as a writer. (I think.) I'm debating whether or not to write a blog about my recent experiences with - well, you can guess. You can also guess that I'm not really debating whether or not to discuss it. More like bolstering my courage.

Moms of kids with special needs (particularly adult children who are incontinent), take note. I will soon dare to discuss a topic that isn't easy table conversation or coffee conversation or any type of conversation held in any venue other than a medical office, really.

This is your warning. Get ready.

But I promise, no action photos.
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Invisibility

2011-11-15T00:57:00.000-06:00

I have been contemplating invisibility -
the difference between things seen and unseen.

And I have wondered how some things that can be seen
exist unnoticed.
Invisible by default.

How is it that people can live invisibly -
by choice or by chance?

How is it that being seen can be empowering,
while living invisibly can be empowering too?

By choice
and
by chance.

Can invisibility be recognized?
Not by those who are looking.
Of course not.
But perhaps by those who are looking for it.

Empty nothingness that pulsates with power.
Impossibilities energized with potential.

By choice
and
by chance.

Unseen by chance, empowered by choice.
Maybe.
Answers come with the choice to be seen.
Perhaps.

Yet some things that can be seen exist without being noticed.
Invisible by default.

Invisibility is real.
It doesn't matter if others see it or not.
Therein lies its power and its peril.
Whichever you choose to see.
Whichever you choose to be.
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Reformation (Thank You, Martin Luther)

2011-10-31T01:12:00.000-05:00

Please don’t read my next sentence as any type of proselytizing (that would be out of character for a Lutheran anyway). But …

I love Lutheranism.
Love it. Particularly the ELCA variety.
The Luther LoveFest (my term) that we observed in worship this morning reminded me how much I do.

In honor of Martin Luther’s most recognized and lasting legacy, we Lutherans pulled out all the stops (literally, I believe, for the organ) to observe Reformation Sunday. Our music director even specially arranged an incredibly creative third verse of “A Mighty Fortress” for the congregation, adult choir and Waldorf College brass ensemble. I have always found that verse, which speaks to Luther’s notion of the earth filled with “devils,” fascinating. Today it was even more so. The director’s version had demonic choral sounds, bold brass fanfares, dramatic organ glissandos, and an abrupt finish – as if “one little word” had “felled” it.

Then we launched into the final verse: Let goods and kindred go, this mortal life also; The body they may kill; God’s truth abideth still; His kingdom is forever.

During this iconic hymn, I filled with so much emotion, so much gratitude for Luther’s kick butt, tenacious faith, that I found no extra room in my throat for music to come out. I simply couldn’t sing any more. I could only take in the fullness of the moment and hold on to one thought: I am at home.

I am a Martin Luther sort of follower – at least the historical Luther that has been championed by scholars and theologians for centuries. The Luther who identified corruption, spoke truth to power, wrote volumes of spiritual musings, and aspired to live serving others.

So why not pull out the stops? It is Reformation Sunday, a bit rowdy and rebellious with large doses of passion and pride.

But, of course, I am prejudiced. I am a baptized Lutheran, who – after two separate sojourns into other denominations – returned to the reformer’s road each time. Once via a liberal arts education at Lutheran college, and once via a move that found my husband and I choosing a Lutheran church as our comfortable, spiritual home.

While a young woman at Wartburg College, I, perhaps like many in the mid-16th century, began to read scripture with a mind more connected to who I was than to who those reading it from the pulpit wanted me to be. Through scripture, I met a personal and relevant God who wasn’t nearly as complex and rule-oriented as authoritarian theologians proposed God to be.

My mind transformed – renewed – without the benefit of a personal 95 Theses moment. Not even an outburst of spiritual rebellion. My personal change – my reformation if you will – occurred more subtly. In fact, it continues to occur; I hope it never stops.

As far as Martin Luther’s Reformation, I recognize that my Lutheran tainting may leave me incapable of objectivity concerning how he changed the world. I may also be too enamored by change itself to be objective.

The way I see it: The world changed in an instant because of what happened on October 31, 1517, and yet it took years for that change to be realized. After Luther nailed his "Disputation of Martin Luther on the Power and Efficacy of Indulgences" to the door of the Castle Church in Wittenburg, temple curtains did not tear and graves did not open with the dead suddenly raised to life. But a barrier of authority had been broken and minds began to open. People had greater opportunities to encounter God personally. To think. To use their minds to challenge prevailing beliefs about God. To pray and meditate on scripture they had read themselves in a familiar language.

Luther helped get the church out of God’s way. It’s a feat I continue to regard as worthy; it’s a goal to which I often aspire. Reformation.

Today we celebrated with red stoles on the usually stole-less pastors and assistants, red flags hanging from the interior buttresses, red orbs on the communion servers and, yes, red wine. All of them witnessed to the presence of the Holy Spirit and what can happen when people get out of God's way and faith gets real.

I am seeing red today, but only the best shade of this powerful hue. For at the end of the day – any day – no matter what has happened or is happening or may happen, none of it matters. God’s truth abides. God’s kingdom is forever.

Unless I am convinced by the testimony of the Scriptures or by clear reason (for I do not trust either in the pope or in councils alone, since it is well known that they have often erred and contradicted themselves), I am bound by the Scriptures I have quoted and my conscience is captive to the Word of God. I cannot and will not recant anything, since it is neither safe nor right to go against conscience. May God help me. Amen.
- Martin Luther’s response to the Diet of Worms on April 19, 1521, after having been asked to recant his writings on the previous day.

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Lessons Learned About School

2011-10-28T18:36:00.000-05:00

This column first appeared in the Fall 2011 Newsletter of the Spina Bifida Association of Iowa.

Just as a child’s physical needs change from year to year, so does his or her academic needs. The school year brings ongoing opportunities for parents to learn how to academically support their children. Stross is now 20 years old and taking one to two classes a semester at a local college. After two decades of learning – his and mine – I continue to value this advice:

1 – Address physical needs separate from academic ones. Sometimes teachers and parents – out of eagerness to accommodate a learning obstacle – fail to fully break down an academic issue into physical and academic components. In first grade, Stross began arriving late to his classroom after lunch. The teacher, believing his trek to the cafeteria using his walker was too taxing, allowed him more time. Stross continued to be late. My diagnosis: He was enjoying his time at lunch more than the lessons that followed it. Once we addressed the academic issues and provided a learning incentive, he made it back on time, walking – and learning – on pace with his peers.

2 – Break through teacher barriers. Teachers may have preconceived ideas about what it will be like to have your child in his or her classroom. They may also have used methods and accommodations with other students that they assume will work equally well with your child. Each child has a unique learning profile. That remains true for children with special needs. For our family, that once meant constant, polite reminders that our son with spina bifida (and an assortment of learning disabilities) was different than the boy with cerebral palsy (and his own set of learning issues) that she taught the previous year. Communication is a must. Talk regularly with teachers about your child’s interests, and share stories about ways that he or she learns best at home.

3 – Keep using methods that work. Proven learning methods or tools keep working, but you may need to help teachers adapt ones that you know work well. For instance, Stross played a stellar game of Barney Concentration as a preschooler. I helped his middle school science teacher (and his paraprofessional) see how helpful that skill was when learning the names of elements on the periodical table. One weekend of Chemical Elements Concentration helped him earn a perfect score on his test that Monday.

4 – Support social aspects of learning. Children with special needs must reintroduce themselves to their classmates year after year. Because their uncommon life circumstances fall outside “the norm,” they need to help friends understand how the changes that they are experiencing differ. You may need to encourage your child to have conversations with their friends about uncomfortable topics and even practice conversations about things such as why they need to use a bathroom on a regular schedule.

5 – Enjoy each year. Your child – and you – build on accomplishments from one year to the next. Your child’s ability to be successful in the future is tied to the successes he or she experiences now. Enjoy what you are learning, individually, and together. The future is yours to create.
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Disillusioned

2011-10-22T20:21:00.002-05:00

I have lived with an illusion for most of my life – one I may need to let go.

The illusion is that if I can explain something well enough, I can help others understand that something – and not just understand it but empathize with those most affected.

Faith in my communicative power and capacity to unleash empathy has been great – greater than it is today. And I am not certain of what has made it less now or even how the lessening happened. I am also not sure whether it is a temporary or permanent condition.

As I said, I may need to let go of an illusion or simply ride out a bout of disillusionment.

Perhaps chronic egotism is to blame: I believe I have the power to impact change. That belief alone is not egotistic, for every life impacts change, and such change occurs both actively and passively. It just does. But I may also harbor arrogance about my capacity to influence change.

May? Delete that word. I do.

I arrogantly believe I can influence change for the better, and I believe I can use the power of language – descriptive words and storytelling – to help someone transcend apathy, misinformation, disbelief and denial. I believe in the power of communication. I believe communication aids understanding, and that understanding births empathy. Empathy moves people to action. Maybe.

I am not too hard on myself for holding these beliefs. For I have made a career of persuasive writing. It’s what respected public relations practitioners do with intention and integrity. I hope I am respected by those with whom I have worked. I hope so.

I know that I could not write about a company, an organization or a cause that I didn’t believe in. I could not. Integrity requires me to align my soul with my role. More likely something greater than integrity should be credited, yet I lack the word for what that might be. (So much for my language skills.)

Imagine my thrill when I have made a positive impact – when I have helped increase attendance or donations or supporters for something I believe in. Or greater still: understanding.

But it doesn’t always work. And sadly, it often doesn’t work when something important is at stake. Like helping someone of power or influence understand how his or her thoughts shape decisions and actions that affect the lives of those more vulnerable. Like persons with disabilities. Especially children and adults with both intellectual and physical disabilities.

When financial decisions are at stake, when laws that regulate care are at stake, when attitudes about what might be possible are at stake, who has the power to communicate? What – exactly – is at stake? Quality of life – both for those living with disabilities and for those fortunate not to be.

When I attempt to communicate on this topic, language often fails me. Rather I fail at using the only language I know. And the process of even trying feels muddled. The weight of the potential impact is crushing.

And then passion congeals with frustration.
Anger mingles with aggravation.
Good intentions ramble past impact.

Finally, failure fuels futility.

It is never about fairness.
Yet, somehow, what is at stake should my words fail isn’t fair.

I want to tell you what it is like raising a child – now technically a man – whose life will forever be shaped by what he can and cannot do because of his birth condition. And what I can and cannot do for the same reason.

I want to communicate to you my lack of regret over his life and my great regret about circumstances that others cannot understand. I would hope you could understand without bearing the stigmas and prejudices and injustices that come because of those circumstances. But I am not sure that is possible.

I want you to care about things you do not know.

But I carry no illusion that is possible. Not anymore. Still, I don’t want to be so disillusioned that I quit trying.

Sometime soon I will tell you about spending the night with my 20-year-old son during his sleep study at the Mayo Clinic in Rochester, Minn. How I laid awake for an hour listening to him breathe and listening to the gaps of time when he wasn’t breathing. And how I wondered if the doll he still sleeps beside will outlive me and continue to remain close to him. And how I imagined bestowing that doll with mystical power so it can watch over him and keep him safe. Especially when his father and I cannot be around.

Sometime I will attempt to share that.

Or maybe I just did.

I carry no illusions that what I want you to know and feel is possible for you to attain. But I want to try. And if words fail me, perhaps moving pictures will do.

I don’t know. I can only try. Because I certainly am not good at letting go.
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Vaulted into the Future via a 2012 Volt

2011-10-20T15:12:00.003-05:00

Disclosure: I was provided a $5 gift card to a local coffee shop for test driving the Volt, the same incentive provided all others who test drove this same Volt during the month of October.

I test drove a 2012 Volt on Wednesday, and I swear the car made me smarter somehow. Thank you, Lichtsinn Motors, for a driving experience I hope to enjoy as an owner one day.

Keeping the Volt’s spinning green-leaf circle centered on its efficiency target became my new way to drive. Part overachiever and part video game competitor, I wanted to drive better, and that happy spinning green ball let me know when I was in the efficiency zone. For most of my time in the Volt, I was. Whether accelerating or decelerating, I felt in sync with the car and proud, even, of the efficient way we glided to our destination together.

Smooth, quiet, comfortable and, yes, capable of impressive speed and power on the freeway, the Volt gave me a glimpse of my future. At least that’s what I said to my husband, Mark. My actual words were: “This is our future. Now, how do we afford it?”

If I had any doubt about the Volt’s futuristic role, the newest driver in our family, our 16-year-old son, Skye, blew it away. He slid into the driver’s seat with a huge smile and a “ha-ha” type of masculine giggle. Taking the steering wheel into his hands, he looked at me with pure delight and declared: “This is the future.”

So it is.

And I like this version of the future. Very much so.

From the Jetson-like sounds of the “power on” function to the near whisper of the motor, I took in the multi-sensory experience of the Volt as much as possible. I drove it on quick errands around town and then rode as a passenger on a date with my husband. City driving, highway driving – regardless of circumstance – the Volt felt more like a companion on a mission than a mode of transportation. We had places to go and a way to get there more efficiently than we ever had before. Our family's biggest hold up: Our oldest son, Stross, uses a wheelchair, and this hybrid vehicle simply isn't large enough for us.

What – specifically – I liked:

• Green Leaf Circle – I have already gushed about that. Need I say more? Be assured it wasn’t a distraction. Its location by the speedometer made it as easy to keep track of as my speed.
• Power Flow and Efficiency Screens – I absolutely loved keeping track of whether I was using battery power or engine power or if the regen battery power was at work. And between stops, I regularly checked to see my efficiency ratings and mpg, amazed at how little fuel I was consuming. I would love finding out if the novelty of this ever wears off. I hope not.
• Speed – Both Mark and I were pleasantly surprised at the Volt’s speed and power. And we both had to remind ourselves to keep checking our speed. Because the Volt runs so quietly, it’s easy to accelerate past the speed limit without hearing that you have asked the engine to go faster. Gliding. That’s what I kept thinking. I am gliding more than driving. As I said earlier, I felt at one with the car.
• Braking – Not sure what I expected about the feel of the braking system, but I liked it. Gentle to the touch when decelerating with just the right amount of tension when I needed a fast response; and, when I needed my brakes to avoid a driver who was turning through an intersection on a red light, I got them. Confidently so.
• Seating (front) – Mark and I both enjoyed the comfortable bucket seating and legroom of the passenger and driver front seats. I would describe it as a nice mix of sports car and sedan styling.
• XM Satellite Radio – I am a news junkie, so having CNN inside the car was a treat. Same for the MLB Network. We were able to catch the last innings of the first game of the World Series on our way home last night. (Congratulations, Cardinals!) Our sons had their own favorite channels, of course. (And, no, they were not on our date.)
• Keyless entry – I really enjoyed being able to walk away from the car and then approach it again - locking and unlocking with the mere push of a button. As long as the key fob was as near as my purse or pocket, I was good to go. Who wants to dig keys from the bottom of their purse on a cold day, anyway? Wonderful feature!
• iPad/iPod Compatibility – I was treated to one of my husband’s playlists from his iPad for our date. Nothing helps make a car feel like it belongs to you more quickly than having it play music of your choosing. What a treat.
• Bluetooth – I ran out of time to check out the Bluetooth function but already believe I would like it.

What – specifically – I hope gets improved in 2013:
• Touch Screen Console – I would love to see this become more like an iPad with screens that scrolled with a touch. The buttons on the Driver Information Console already feel outdated despite their clean and aesthetically pleasing design. I got an iPad a few months ago and found myself wanting to scroll to the desired screen rather than remember the exact touch area or button. Touch scrolling would greatly improve the driving experience while reducing potential distractions.
• Headlamps on Dim – The dim setting for the headlamps has a distinct and low sightline horizon. At night I kept feeling like I needed to duck my head lower to see farther. I also found myself looking forward to opportunities to return the lamps to bright.
• Seating (back) – More room is needed for back seat passengers somehow. Mark, at 6’ 2”, had a claustrophobic moment. His head had to be positioned inside the rear window bay, and his legs soon felt cramped. He tolerated a drive around the block, but after few minutes in park, he was very ready to get out, and – unfortunately for him – I had yet to learn how to override the child safety locks. Rather than searching the console, I got out of the parked car and ran to free him. I can’t imagine him willingly sitting there again anytime soon. My 5’ 11” teen tolerated the back a bit better, but only because he wasn’t claustrophobic, merely cramped.
• GPS – The system was easy to use but when I headed out on well-traveled back roads, it didn’t know where I was. This issue is common with GPS, yet I dream of a day when updates occur automatically. Wouldn’t that be great?

Chevy Runs Deep
Chevy runs deep in our family. The car my dad learned to drive first was a beautiful black and white ’55 Chevy that his parents bought new. It was the car he and my mother used to bring me home from the hospital. My husband learned to drive in a ’78 El Camino his father purchased with only a few hundred miles on it. We drove away in that vehicle on our wedding night and now our 16-year-old drives it to school. A 2007 Uplander, now approaching 100,000 miles, is the workhorse for our family. It’s the vehicle best capable of carrying the four of us, our oldest son’s wheelchair and any cargo we might have. If hybrid technology came van-sized, we would aspire to own that vehicle.

A note about the Volt’s accessibility: The carriage height and front door openings on the Volt are wonderful for manual wheelchair transfers. Unfortunately, the only way for the wheelchair to be transported in the vehicle is with both back seats down, and the wheelchair folded in half. Even then, the lift height necessary to put it inside the rear hatch was a bit of a stretch for me – easier for my taller husband. Oddly, the Volt was comparable to our El Camino as a two-seater mode of transportation for Stross as a passenger. And while we – on rare and only in-town occasions – tether his chair in the open bed of the El Camino, the Volt made it possible for the wheelchair to ride enclosed. When we don’t need to take the whole family somewhere, the Volt would make a wonderful second car for our family. If you'd like Stross' positive take on it, just watch the video below. (I find his comment after his ride rather charming - and hopeful.)

During my test drive, I felt vaulted into the future somehow and found myself wishing the automotive industry’s transition to hybrid technology comes as surely as the broadcast industry’s transition to high definition. We are smarter now, capable of driving more efficiently than ever before. I eagerly wait for the day all our family’s vehicles are primarily battery powered. (Well, we will likely still have that ’78 El Camino, as some things are simply too deep to give up.) Until then, let’s start vaulting into the future, allowing cars like the Volt to get us there.

The 2012 Chevy Volt – It’s just a smarter way to drive.
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9/11 - Never Forget

2011-10-15T00:36:00.001-05:00

The tenth anniversary of the 9/11 terrorist attacks is now one month and four days past. Prior to the many local, state and national observations – and especially on Sunday, Sept. 11 – numerous people repeated the refrain “Never Forget.”

It seems fair to question: Have we forgotten?

The answer depends on how well we identified what we wanted to remember, doesn’t it, and I don’t think we attained consensus that. I only remember consensus on the desire to “never forget.”

Is that the only thing we are to never forget?

During 9/11 celebrations last month, some people petitioned audiences to not forget that our country has enemies. They mentioned who they believed those enemies were and warned that those enemies wanted to destroy our country. It wasn’t always clear if all Americans agreed on the content of the enemy list.

Others implored us to not forget what it means to be an American. Yet with possible definitions as diverse as the nation that 312,423,954* citizens claim as their homeland, I don’t think we have consensus on that topic either.

Still others pleaded to not forget the sacrifices made by our service men and women. On that, all agreed. We have consensus for gratitude.

So, again, what are we to never forget?

Something I have not forgotten is how my youngest son, Skye, then six-years-old, brought me a drawing less than one month after the four separate planes crashed into the Twin Towers, the Pentagon and a field in rural Pennsylvania. He had gotten a fresh piece of computer paper from my printer and drawn what I could only guess was his tribute to America. His drawing depicted the four presidents of Mt. Rushmore and what he imagined they were thinking as they sat atop the mountainside.

Washington was thinking of ancient Indian drawings, Jefferson was thinking of the Statue of Liberty, Roosevelt was reflecting on the Badlands, and Lincoln was thinking about “when the bad men crashed the plane into the New York skyscrapers.” With Skye’s permission, I added his descriptions as he told me about his artwork (which has Roosevelt and Lincoln in each other’s position on the monument). I was so proud of my little patriot. I still am.

Skye, now 16, didn’t remember he had made this drawing until I found it and showed it to him tonight. He had forgotten. We didn’t talk much while looking at it. He was too focused on his evening plans. Life has moved on for my American teen in a semi-predictable and traditional way. But sometime I would like to know what his picture of America looks like now. What stories of our country’s history are most prominent in his mind? And what factors have most shaped his concept of what it means to be an American? What does it mean to him that more than 10 years ago some Islamic militants executed a coordinated plot to inflict terror within the United States of America, taking nearly 3,000 lives?

If he cannot remember the drawing he created in October of 2001, I am confident he cannot remember the pre-9/11 America of his birth. And that’s probably as it should be. Life has no reverse. Even those of us who remember that version of America can do nothing to return society to those innocent and naïve days.

Other countries had known such terror before us. Had we forgotten? Is that what we now should never forget?

My most enduring memory of September 11, 2001, is how the world came together to grieve all we had lost – nearly 3,000 lives, iconic structures and a way of life. Not only had we lost that version of America, but they had lost it too. That shared grief and a solidarity against terror are what I will never forget and what I regard as 9/11’s most enduring legacy.

I hope we are able to experience that type of unity again, but not because an act of terror or war brings it about. I hope we remember that unity can come through acts of peace as well.

What will the America of 2021 be like? What will those presidents atop Mt. Rushmore be contemplating in the minds of any young grandchildren I might have by then?

I can only wonder what they will attempt to never forget, and what Skye will continue to remember. Thanks to him I will always remember this drawing and how it gave me a perspective that spanned beyond the conflict of the moment. He connected me to America’s proud past and a future still full of possibility. I'm already proud of his generation, and I will never forget that.

• According to the U.S. population clock at 10 p.m. on October 15, 2011.

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Crumbs Under My Table

2011-10-09T21:55:00.001-05:00

All were invited to come to communion near the conclusion of our church's worship today. Rather than kneeling, we formed a line to be served continuously with worshipers making their way forward to servers - one tearing off and handing out pieces of bread and another handing out small cups of wine or juice.

Always a gentleman, Mark stepped from the pew and into the aisle wide enough for me to assume a position in the line that was directly in front of him.

I was served my portion of bread with the words "The body of Christ, given for you," but missed receiving it fully into my hands. Instead, my bite-sized bread of life wafted through my index and middle fingers. Looking at it on the carpeted floor, I contemplated bending down to pick it up, or simply asking for a new piece. I mean, the body of Christ was freely given. Why not get a fresh portion?

"Sorry. May I have another?"

I cannot remember who picked up my fallen piece - me or someone else. I can only remember the activity of it being retrieved, the movement of the woman serving bread as she pulled off a new portion, and the smiling face of the wine server now patiently waiting.

As I took my cup - "The blood of Christ shed for you" - I heard Mark behind me.

"That's ok. I'll just take this one."

I turned just enough to see him bypass the fresh piece of bread being offered to him in exchange for my discarded portion, now lying on the palm of the server's hand in a position as far as possible from the main part of the loaf.

"If I don't take it, it will just be in your way as you serve others," he said.

Nothing like a concrete reminder of what humility looks like while coming to commune.

The metaphors present in Mark's sensible supplication are numerous. I find no need to enumerate them here. I simply wish to share what I encountered when I came to the table today and was reminded, once again, of my humanity - and of my husband's.
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Thank you, Steve Jobs

2011-10-06T00:21:00.007-05:00

Steve Jobs died today. I learned of his death from a friend’s Facebook status as it appeared on the screen of my MacBook Pro. Stunned, I scrolled through status after status, each broadcasting Steve Jobs’ name along with sentiments of gratitude for his life.

Then I reached for my iPad 2, and my CNN app pop-up told me that Steve Jobs had died and asked me if I wanted to learn more. I did, for my future – a future without innovative products that have been born in the mind of Steve Jobs – had arrived. Just to be certain, I typed Apple.com into my browser. When the homepage loaded, I cried.

I cried. About Steve Jobs’ death. But why?

Steve Jobs and Apple, Inc., have been synonymous for me. I trust the products I rely on for work and personal enjoyment because I trust – make that trusted – Steve Jobs. Maybe I trusted Steve Jobs because I had discovered that I could trust the products he envisioned and then brought to life.

In the 90s, when savvy business minds were predicting that the company Jobs’ had co-founded would crumble because he was no longer at the helm, I somehow believed that simply could not happen. I believed he had created a product that – even though it enjoyed a small market share at the time – was the creative lifeblood of industries that millions relied on for entertainment and design pleasure.

Therefore, Apple couldn’t die. The movie industry, the design industry, the advertising industry, even school teachers loved what could happen because of what Apple made possible.

But Jobs, a human and not a company, could die. I knew he had been fighting pancreatic cancer for years and had mentally prepared for his death long ago, soothing myself with thoughts that Apple, Inc., was greater than one person’s life. Even Steve Jobs' life. I had reassured myself that the company (and it is just a company) would survive long after his passing. But I had not calculated how much gratitude I would feel for Steve Jobs – gratitude for all the ways the fruit of his labors have enriched my life.

I have a lot to be grateful for.

- For the 1985 Macintosh computer that arrived in the journalism lab just in time for my senior year of college. I got to step into desktop publishing from a typesetting foundation that matched Jobs’ love of typography.
- For the Apple IIE and the resumes and cover letters I created on it. They led to a job I loved so much it became a career.

- For the Apple PowerMac that powered my fledging freelance career and for the fleet of them that my husband, Mark, turned into a fully integrated multimedia lab for a small college with big dreams.
- For the Apple magic that allowed Mark to build a digital radio station and a digital television station while supporting print, web and photography applications. He had the privilege of living what he loved. Steve Jobs did too.

- For Pixar. "Toy Story" is the first movie my youngest son can remember. It remains his favorite. The Pixar legacy is the cinematic record of his childhood. If I ever doubted that, "Toy Story 3" clearly cemented the fact when I began bawling as Andy left for college.
- For the iPod incentive that coaxed my youngest to sell more magazines than others in his class so he could own one of the first iPods in town. He learned what it felt like to set a goal then enjoy the reward of achieving it. And he taught the rest of us to want an iPod of our own.
- For the MacBookPro that made it possible for me to get an online masters degree.
- For the iPad my son bought with his confirmation money.
- For the iPad 2 (bought with my birthday money) that taught me to hope again because its intuitive interface let me know that I still have a capacity to learn and even apply what I learn within a few clicks.
- For things like iPhoto and iMovie and Flip cameras that allow me to capture the very best moments of our family’s lives and then turn them into gifts for other members of our family.

- Finally, for the iPod Touch and PowerBook that have made it possible for my oldest son, born with intellectual and physical disabilities, to point and click his way into connections with a world that exists outside his limitations. When he learned of your death tonight, he took out his iPod and read about your family. He wanted to know if you were married and had children. He wanted to know who was most sad tonight because you had died.

He gets it.

Steve Jobs. My life is richer because you lived your passion and dared to bring what you were able to envision to life. You anticipated ways to improve people’s lives, and then introduced those ways to us before we even knew we needed them.

I think that is why I cried. While you were alive, I felt reassured that I wouldn’t miss out on incredible ways to encounter my future. Now I won’t know what I am missing because you are no longer here.

Thank you, Steve Jobs. Well done. May you rest in peace.

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Added: Oct. 6, 2011 - 3:25 (CT)

I just have to add Mark's tribute to Steve Jobs. What a wonderful image. Since this multimedia lab was first built in 1994-95, countless college students have engaged in an enhanced educational experience because of what Steve Jobs helped Apple do for education. They carried that home with them and then, literally, across the world. What a privilege to have been part of it.

Testimony

2011-10-01T02:39:00.002-05:00

Stories of life.
You have yours.
I have mine.

Stories for sharing.
You share yours.
I’ll share mine.

Who will listen?
Me to yours?

Of course!
Please go on.

Now
will you listen?
If you do
will you hear?

This story is fully yours.
I offer it to you.
It is mine, only mine to share.

My story.
My testimony.
My life.

What in God's name do you hear?
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In case you missed it: Nice.

Nice

2011-09-14T17:11:00.001-05:00

It’s nice when you no longer cry
at remembering
some thing
or someone
you could not forget if you tried.

You have discovered that
attempts to make sense
can create order
even when there is no sense to be made.

No tears.
No anguish over disorder.
You have let go
for good.
Your falling finally fell into place.

Nice.
A worn word that fits well.
Finally.

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In Case You Missed It: Dear Iowa Visitor (Sept. 13)
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Dear Iowa Visitor,

2011-09-14T00:23:00.004-05:00

Thank you for asking me what there is to see in the western part of our state. I like knowing that you want to experience more of what our fine state has to offer as you climb into your Winnebago to head back to California. I trust you will enjoy the cities and sights I suggested experiencing as you make your way to Omaha by tomorrow evening.

I also hope the restaurant owner and I have convinced you to return someday to enjoy the eastern side of Iowa, particularly the northeast section of the state. The bluffs along the mighty Mississippi tell stories of Native Americans who navigated the waterway in birch bark canoes, and fur traders and river boat captains who did the same with similar skill but much less grace.

The scenery along the highways and byways as you head east is lush. You joked about it likely being "just field after field of corn." Yes, there will be cornfields, but I think what you'll see most as you ride the ridges in northeast Iowa are the coulees and deep, rolling meadows that are tucked in-between the fields of corn and soybeans and alfalfa and hay. And you'll be enchanted by the cows that graze the hillsides in poised, artful poses. And you'll find your gaze wandering across the horizon connecting silo to silo, barn to barn - amazed at the number of farms, the number of families, who claim this beautiful land for their home.

When you return, you will again experience the "uncommon kindness" that you said has impressed you so much about our "clean and friendly" state.

One last thing: I regret that I forgot to encourage you to begin driving west about 30 minutes before sunset tonight so you could see the incredible purple, pink, and peach hues that paint our evening sky. The sun becomes a red hot ball, irresistibly inviting to look at through muted treetops and corn stalks and silos. Its fading haze diffuses and blends the last rays of the day's color. An Iowa sunset is virtuous. An Iowa sunset is honest - an invitation to another day, only hours in the making.

Iowa Visitor, it was lovely to talk with you today. I hope our paths will cross again, perhaps at the intersection of roads that separate cornfields in the middle of NE Iowa. Safe travels as you venture to Omaha tomorrow, and then across the Great West to California. You'll see incredible sights and journey through incredible places to be sure. But nothing like quite like Iowa.

Guest Blogging: Week in Review

2011-08-28T17:24:00.000-05:00

I've been home from the ELCA's 2011 Churchwide Assembly for little more than a week. A total of 1025 voting members represented our 4.4 million member denomination for this biennial gathering in Orlando. They attended as representatives of 65 synods; I attended because of my role serving as chair of the Advisory Committee for The Lutheran magazine.

Each day, I recorded my thoughts in a blog. They convey my reflections as a first-time attendee of such a national gathering. I invite you to experience my week as well. Be sure to scroll through all six entries. The Thursday post about worship has links to videos that will allow you to share in the experience more fully.

Blog: ELCA 2011 Churchwide Assembly

Even nine days after the closing worship, I still feel proud of the unity evident amid the beautiful and expansive diversity of the ELCA. All are welcome. All are part of the mission we share: doing God's work with our hands. We have been freed to serve.

Tuesday as a Guest Blogger

2011-08-17T22:01:00.002-05:00

Have you been reading along? On Tuesday, members of the ELCA enjoyed opportunities to hear what is happening because of mission work within the United States and in areas around the world. I touch on a bit of it.

The Lutheran

Here's a brief video to give you a taste of our group's spirit of mission: Mission Encounter

Enjoy!

Monday as a Guest Blogger

2011-08-16T19:47:00.000-05:00

I am enjoying my week as a guest blogger for The Lutheran while in Orlando, Fla., for the 2011 ELCA Churchwide Assembly. I invite you to join along. If I can figure out how to accomplish it using only my iPad, I hope to begin including photos and videos. I am optimistic about my ability to overcome my technophobia, but I guess only trial and error will determine if my optimism is warranted.

What a wonderful week for our denomination. I hope you enjoy.
The Lutheran Blog

Soon

2011-08-13T23:00:00.007-05:00

While I still don't know what I will write about for my next post, or when I will be compelled to write it, I sense the words will be arriving soon.

I have been collecting my thoughts, ordering my ideas and waiting to become intentional about my time. The waiting is the strange part. Evidently I am not ready to make time to write. My mind would like to, but my soul hesitates. I am not sure I understand why. My best guess is that it is not prepared for the flood of emotions that are certain to come with whatever finds its way into written form.

I have not only been collecting and ruminating over words. I have also been collecting images as well. Snapshots of time that focus my thoughts on life paradoxes - like this image of fireworks lighting up a night sky in celebration. It's as if these explosions of color attempted to dwarf the moon. Yet their moments of explosive, momentary brightness were no match for the constant, persistent brilliance of the full moon.

In the photo, the moon appears a small dot of white in the far lower right portion of the frame (not the light on the edge). And throughout the 15-minute fireworks display, the moon kept rising and gaining luminance, demanding recognition. It didn't take long for the moon to rise higher in the night sky than any of the fireworks could have attempted.

And that's as it should be, yes? It is the moon, after all. A reflection of the sun's incredible intensity and maestro of each day's tides.

I look forward to what I might reflect in the coming days, weeks, months. Perhaps I'll even reflect more on the moon.

Perhaps I'll do so.

Soon.

Day of First Awakening (aka, Loss of Naivete)

2011-07-12T01:15:00.003-05:00

I want to honor this day - July 11 - somehow. Not because I am experiencing any sense of deep emotion or nostalgia. And not because I am grieving. I would recognize grief. Grief has not been part of my day. Yet each year on July 11, I wonder if I should be grieving.

This wonderment is an intellectual exercise that begins the first time I see or hear "July 11." It causes me to remember that this date is supposed to be significant to me somehow. And eventually I remember why. I always do.

July 11 is the anniversary of our miscarriage. Well, it is the anniversary of the day our miscarriage began. July 12 is the day a doctor performed a d/c to wipe from my uterus a pregnancy that was medically noted as "a blighted ovum" and "an incomplete spontaneous abortion." That was in 1990, 21 years ago; and for more than two decades, I have always taken note of this date without grieving what might have been. I can't explain why I don't grieve. I simply know that is what occurs.

I certainly grieved on that day. Mark and I both did, and we were deeply grateful for a way to manage our grief together. It came as a gift of an overnight trip to the beautiful city of Pella, courtesy of a friend and coworker named Becky who had given birth to her first child a few months earlier. In Pella only days after our miscarriage, Mark and I had a wonderful dinner together, and then saw the movie "Pretty Woman." We sat side-by-side in the dark theater, crying over storybook story lines that only seemed possible if shaped by a director in Hollywood.

We grieved the loss of a dream, more than the loss of a child. We grieved the loss of our innocence. Holding each other in the hotel room that night - crying in the dark with no words shared - we simply wanted things to go back to the way they had been before. A romantic do-over. A rescue. Our own "Pretty Woman" fairytale ending.

Prior to July 11, 1990, Mark and I had lived without fully comprehending that bad things that can happen to good people. As good people, we had lived with simplicity, appreciating the good things of life and offering thanks for the fact that we enjoyed many such things. But then something bad happened to us, and we learned that any plans we made were subject to change based on what happened in and to our lives.

We also knew that what had happened had not been ordained by divine decree.

God had not caused our miscarriage. God had not zapped our lives with a dose of reality in the form of an aborted pregnancy. The comments people had shared that attributed circumstantial providence to God rang false to us then, and such comments continue to ring false to us today.

Bad things can happen to anybody, and they are likely to happen unexpectedly. We became keenly aware of that on July 11, 1990, and became even more aware of it on May 5, 1991, when our firstborn child arrived with multiple, severe birth defects.

And so my personal Day of First Awakening - July 11 - should be honored somehow, I think. That must be why it always resonates with remembrance.

I am choosing to honor it this year by writing this blog, and by posting my recounting of our miscarriage as it appears in Chapter 2 of Involuntary Joy. I offer it to you with gratitude for the lessons life has so beautifully taught me. Lessons about resolve, resilience, courage, trust, joy, shared humanity, grief, anger, faith, hope, and yes ... love. Of course, love! The very stuff of life.

I also feel it's important to affirm this: I plan to keep moving along on my journey, while maintaining faith that there is much in store - and far more good things than bad. I not only believe that about my life, but about yours as well, whomever might be reading this.

As I heard on that day 21 years ago, "let's be on with it."

Weeping may linger for the night, but joy comes in the morning.

Hold on. A new day is soon here.

Excerpt from Involuntary Joy
Chapter 2: Becoming a Mom

Stross would forever be my first child but not my first pregnancy.
I’d come of maternal age nearly one year earlier. Something had
not felt right then either. No matter how hard I’d tried, I could not
imagine having that child. I had wanted to believe a baby—that
baby—would be, but I had been apprehensive then too—mostly that
I would never have a baby—especially that baby.

The opening sentence of a journal I kept while pregnant the first
time reads: “I have a difficult time believing I’m pregnant.” And the
last journal entry foreshadowed that pregnancy’s outcome: “I can’t
help but be anxious about the health of this little ‘critter.’”

I’d attributed those feelings to watching a coworker and his wife
experience a miscarriage. Their loss had justified my fears. But when
I’d mentioned my fears to other women—especially women who
were mothers—they had brushed my feelings aside as the jitters of a
first-time mom. I had never mentioned those fears to Mark, deciding
it was in his best interest to sit out my private dance of fear.

It was bad enough he’d had to endure my hormonally induced
mood swings. One day I’d be thrilled about becoming a mother
and nearly ready to believe I had a life growing inside. The next
day I was an anxious, emotional mess. Nothing was as I dreamed
it would be. There had been no inner glow, no thoughts of nursery
patterns and baby names and no sense of oneness with my child. I
had wanted to believe in the promise of life, but believing I’d be a
mother someday seemed the most difficult thing of all.

A few weeks after my coworker’s miscarriage, I walked down
the street with a friend from work, a new mother herself. We talked
about the other couple’s loss, and I cautiously confessed my feeling
of emptiness, of my inability to believe that life—that anything
really—was growing inside.

“That’s normal,” she assured me with the authority of a veteran.
“You’ll know it’s real soon enough when that baby is keeping you
awake at night kicking.”

It won’t be long now, she assured me.

Eleven weeks into my first pregnancy things did start to feel
almost normal. I was resigned to the fact that pregnancy wasn’t
going to be the same as I’d vicariously lived it before. So I wore
my uneasiness proudly and comfortably since “that must be how
pregnant women feel.”

My body had acted pregnant. Mornings were spent near the
toilet, my breasts ached, my pants were snug, and I had cravings—
mainly for Wisconsin cheese curds. For a brief time parenthood
looked promising. I had believed if anything were to happen, it
would have happened before I’d attained this level of comfort. I
could see the second trimester on my desk calendar, yet one nagging
fact remained. The doctor had not heard a heartbeat.

Then on July 11, 1990, I became a woman who’d had a
miscarriage.

That day I’d left work in a hurry in order to get to church
early. Typically a Wednesday night meant directing the youth choir
in rehearsal and leading a Bible study on a topic like dating or
friendship or God’s grace. Mark and I worked as a team in this parttime
job that helped us afford our urban professional lifestyle.

This Wednesday, no youth activities were scheduled, only the
church’s monthly business meeting, which meant I had a report to
type. So I slid my tiny, but growing tummy under the secretary’s
desk feeling, for the first time, like I might have a glow.

I wore no maternity clothes yet—just an outfit that was loose
enough for strangers to wonder. Only one pair of summer slacks fit
comfortably, white ones that always showed any speck of food or dirt
accumulated during the day. Mark was working late shooting video
on location somewhere, so I indulged in baby conversations with
anyone who asked how I was feeling. I welcomed every diversion.

“Yes. My clothes are getting tighter.”

“Well, the morning sickness disappeared last week.”

“Yeah, it’s beginning to sink in. I guess. I’ve never been
pregnant before.”

“Yes, Mark will be an incredible dad.”

Ten minutes into my typing-talking phase, I felt a warm gush.
My first thoughts were of embarrassment about stained white pants,
not of loss of life. I had not worried like a protective mother-to-be.

Instead I tingled with raw anticipation. Something had gone wrong
just as I’d known it would.

Miscarriage.

It was real. I could believe it, and as it began to happen, I felt
myself relax into it even as my heart began to beat faster. I felt
my breaths coming slow and deep as parts of my body began to
contradict themselves.

A quick trip to the bathroom confirmed my diagnosis, and I
shook uncontrollably, feeling very alone as I sat in the dark bathroom
stall. Questions raced in my mind, but only questions about me, not
about any baby who may or may not be fighting for life.

How was I to act now that my body had betrayed me? Should I
just wipe everything away and walk into the hall as if nothing life changing
was happening?

One, maybe two full minutes went by as I held my forehead on
my knees thinking. I had felt fine moments before, but I wasn’t fine.
I’d thought I wanted someone to come find me, the right someone—
a woman who would notice what was wrong just by looking at my
face. She could then assure me that I had overreacted. I needed a
woman who had been where I was headed and knew what to say.
But as busy as our church was that evening, no one came in. So I
breathed a prayer for guidance, lifted my forehead, straightened my
clothes, took a deep breath and stepped beyond the bathroom door.

This, without a doubt, had been the beginning of some end.
Only years later would I reinterpret that day as the preface to a
greater beginning, for I’d faintly acknowledged a voice I recognized
as God—not as coherently as I would in years to come—but clearly
and directly: “Get down the road. There is much in store for you, so
let’s be on with it.”

My crying waited for rushed good-byes to the church staff and
reassurances to them that: Yes, I could drive home. Yes, I could
locate Mark. Yes, I would keep them posted. Yes, I knew spotting
could be a normal part of pregnancy. Then I’d headed out the door
and toward the reality I’d unconsciously expected.

What I’d neglected to tell them was something I felt deep within, deeper than I’d ever felt before. I didn’t tell them what I, in fact, knew: I was a woman having a miscarriage.

The next day I stared at an ultrasound screen realizing what the
technician couldn’t—wouldn’t—tell me. My amniotic sac contained
nothing of importance. No embryo, no fetus, no baby—just a tiny
spot, a speck really, where I’d assumed a baby should have been.

I glanced at Mark to make a quick assessment of his emotional
state and realized that he, too, had made a similar diagnosis.

“What is that?” I asked the technician pointing to a dark watery
sac the size of a quarter. I’d wanted to hear her say “an empty
amniotic sac.”

“That is your amniotic sac,” she dutifully replied, offering no
information about its contents, lacking or otherwise.

I didn’t ask the next obvious question: Where was the baby? Instead
I let my inquiry float, unspoken. I needed no official verification.

As the technician finished, she swiped her gooey wand across
my abdomen, wiped up her trail with a handful of tissues and then
left Mark and me to our private thoughts.

I looked to Mark.

“There’s nothing in there,” I said.

I’d spoken about my body as if it belonged to somebody else. In
a sense, it had. The only problem was, the person who’d inhabited
it was no longer there. She, or he, had stopped growing a few days
after conception. A blighted ovum, we’d been told, a condition that
sounded more like a plague than a pregnancy gone wrong.

“Mark. I’m having a miscarriage.”

My spoken thoughts broke the silence. My words acknowledged
that what had begun remained incomplete. The end of that pregnancy
would fully come hours later—only after a doctor surgically scraped
away something that had hardly been there in the first place.

“I know,” Mark said and touched my hand. His smile conveyed
love mixed with pain, and his eyes betrayed his heart. I felt stunned
by his ability to look at me and express empathy without speaking.
He managed to say “I love you” and “I hurt for you” through softened
eyelids and the down-turned corners of his mouth.

“I’m a woman who has had a miscarriage,” I blurted in a matter-of-
fact tone. “That’s who I am now.”

My announcement sounded almost like a warning. It was as if I
felt the need to reintroduce myself to Mark. Sort of, “Hey, I’m your
wife, but there is something you really need to know about me. I
have had a miscarriage, and I’m not sure what that means about me
or our future.”

In that instance I’d redefined who I was. I was human, which
meant I was susceptible to human afflictions, human pain. I had
a body that could betray me. Until then I had not realized how
superhuman I believed myself to be.

That was the first day Mark’s and my future became different
than what I had imagined it to be. The miscarriage made all coming
moments unpredictable. In the darkened ultrasound room, there was
only Mark and me and my empty womb.

“We are a long way from Carvers,” I told him.

He offered a half smile and squeezed my hand.

“A long way,” he agreed.

Carvers Restaurant had been our Camelot, the magical location
of our first meeting and subsequent courtship. Every Friday and
Saturday night during our junior year of college, we donned tuxedo
aprons and sang our way into each others’ hearts as singing waiters.
No matter how many dined in the restaurant’s Chalet Room those
glorious evenings, I could always count on one pair of eyes to lock on
mine across a finely laden sea of glassware and candlelight. Mark and
I had not cared that our infatuation was obvious. We were intrigued
with each other and excited about our newfound friendship.

At Carvers I’d never seen pain in Mark’s eyes. But sitting in
the exam room where we learned of our miscarriage, I could see
his pain—feel it even. Had it been possible, I’d have transported us
back to the place where our dreams had essentially begun—back
to a time when he was the tenor with a huge smile, and I was the
flirtatious alto who always managed to be near him when a song
required a male partner.

Had we been able to go back then, perhaps we could have navigated away from the place we found ourselves on the day of Stross’ birth. For if a miscarriage could turn Carvers into a faraway land of distant memories, perhaps Stross’ birth would cloak all our happy times in a fog dense enough to obscure a lifetime of happiness.

But our earliest connections couldn’t be so easily dismissed. As
friends and then as a dating couple, we had wrestled with big topics,
drawing energy from impassioned conversations that bordered on
debates. Day after day we’d offered important topics to each other
for full examination: our families—his spiritually conservative,
mine politically active; our manner of addressing conflict—his
silent avoidance, mine loud confrontation; and our concept of
spirituality—his an exclusive relationship that defined a means to
an end, mine an open relationship that invited definition.

When our dating turned into an engagement, we also discussed
career aspirations—his connected to the music and audio industries,
mine on a path to a corporate vice presidency; our desire for
children—his a family of four, mine a family of two; and our regard
for marriage—for us both, a partnership.

Our courtship had laid the groundwork for our relationship,
just as our miscarriage had prepared us for the extraordinary
circumstances of Stross’ birth. I could tell we remained partners and
that Mark’s pain and fear were catching up to mine.

I’d written off my earlier fears as oddities of pregnancy—like
a baby who rarely kicked in utero. In fact, our baby—Stross—had
been unresponsive even when Mark or I attempted to jostle him into
a reaction. His unresponsiveness while in my womb had haunted
me—and now I knew why.

Now I knew why my baby—Stross—had laid quietly in my
womb for hours at a time, never moving or shifting positions. A
paralyzed baby cannot kick against its mother’s womb.

I’d learned one more important thing: I could carry a baby to
term. I had given birth to a living, breathing son.

• • •

That's Big

2011-07-09T00:23:00.003-05:00

For weeks I have avoided thinking about or even visiting my blog. A certain brand of sadness has kept me from doing so. As I last wrote, I have been nursing writer’s malaise. Tonight the fog is lifting and words are rolling in to weave a watchful witness of a memory that connects me with one of the earliest manifestations of my soul – my self.

So I find myself watchfully wondering about the condition of my soul. Not “soul” as in the goal some make of eternal existence, but “soul” as in the essence of who I was, who I am, and who I will forever be. That is my witness.

Soul … Self. How are you tonight? I have vowed to keep watch with you, and I have invited words to provide me company as I do. One word in particular: big.

“Big” is the first word I can remember associating with God.

I was four years old, sitting near the top of the 15- to 20-some concrete front steps of the church of my childhood on a beautiful, fall Sunday morning. Sunday school had ended, and I was waiting for my parents to either join me in attending worship or to come take me home. Normally I waited inside the church, just inside the main doors at the back of the sanctuary. On days my parents came to church with me, that was the door they entered, so meeting them there was efficient - not a word I would have used at four years of age, but a concept I understood well.

However, my parents had begun to not join me at church – to just pick me up instead. Their pattern had become consistently inconsistent, so sitting on the front steps of the church had become more efficient once the worship service had begun and the congregation was singing its first hymn. Robust organ music with melodic vocalization was my cue. It signaled that the time was now past my parents’ comfort level for a late arrival to worship. It was time to move my from waiting inside to waiting outside on the steps.

If I sat on the concrete steps, the ushers wouldn’t see either my father or my mother – whomever was picking me up – dressed in non-church clothes and looking a tiny bit uncomfortable about their intentional non-attendance. I waited on the steps to spare my parents – and me – such an embarrassment.

It also helped with another embarrassment. My outdoor waiting spot made it impossible for the ushers to see tension on the face of the parent who had come to collect me. That tension told me my parents had been arguing about something at home in the previous hour. I assumed it told the ushers that as well. While I had been experiencing the holy mysteries of the Sunday school hour, they had – evidently – been experiencing a holy war.

I witnessed a great deal while watchfully waiting.

While sitting on those steps, minutes masqueraded as hours. The pulsing of our church’s massive pipe organ was the only thing that kept a beat consistent with human time; for my heart, my mind, the impulses of my little girl spirit were on divine time, taking in the holiness of a Sunday morning. Me and God sitting on the concrete steps, waiting.

Big stuff.

I was being a big girl.

I was being held close by a big God.

A God big enough to be fully present and to feel as real as I was. Big enough to wonder with me about what else was real in the world. Big enough to be a topic my parents would argue about.

Should our family worship at the Methodist church like my father’s family had done when he was growing up? A church similar to the one whose steps I sat on. Or should our family worship across the street at the Lutheran church like my mother’s family had done when she was growing up? The congregation where I had been baptized only four years earlier.

God certainly was big.

Big enough to turn faith into fighting.

Big enough to be felt in the heart of a girl sitting in solitude one Sunday morning, actually, a series of Sunday mornings.

Big.

My soul waited for the Lord, while my self waited for a parent. Neither my soul, nor my self, were ever disappointed.

I am on new steps today. And as I wait, I know I am not alone.

That’s big stuff. Soulful stuff.

And I thank God for it.

I wait for the Lord, my soul waits, and in his word I hope; my soul waits for the Lord more than those who watch for the morning, more than those who watch for the morning. – Psalm 130:5-6

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Writer’s Malaise

2011-06-23T01:12:00.000-05:00

I don’t have writer’s block. More like writer’s malaise, for I have plenty of topics I would like to write about and plenty of thoughts about how I would like to write on those topics. I just lack the desire to write. At least right now.

Yes. I am writing now. Technically. This blog, at least. But I am doing so with a fake-it-until-you-make-it attitude. This approach has served me well when employed in a position that required me to write something like a news release or a brochure on someone else’s deadline, so it should work now. In fact, I believe in that method so much that I nearly self-inflicted a deadline for some of the blogs I want to write as a way to push me out of my current state of mind. My writer’s malaise.

But I don’t want to. I would rather live this feeling of discomfort as long as it lingers. It must be telling me something; therefore, I need to honor it until I catch its clues.

Meanwhile, I’ll continue to open Word documents and place notes for future blogs in them. I’ll make as many of those files as I care to, and they will populate the desktop of my laptop like empty foundations of unfinished homes in a developing neighborhood. Then one day I will begin to build on those ideas. What takes shape will help me feel at home again, and I will know that I have healed.

Malaise. I believe I could write more about it, but I don’t want to.

Perhaps one day.

Someday.

Until then, cherish your life’s involuntary joys. I continue to cherish mine. This blog included. Thanks for reading.

Slow Motion Motherhood

2011-05-21T18:59:00.006-05:00

There is a phenomena I recognize because of Stross that I have come to think of as Slow Motion Motherhood, or moments when life operates in real time for everyone else yet circumstances have slowed to a frame-by-frame pace for me. As I share in Involuntary Joy, they aren’t limited to hospital waiting rooms or other moments of stress.

With Stross, they have come on the most ordinary of days in the most ordinary of moments. His extraordinary life circumstances simply focus life in a way where contrasts to ordinary are keenly noticed – like when he, at 20 years of age, lumbers across our home on all fours to complete a simple errand because crawling remains his only form of independent mobility. In those moments, simple errands appear complex yet breathtakingly beautiful, courtesy of Slow Motion Motherhood.

While I am certain I have likely had such moments with Skye as well, I regret to admit that I am not as attuned to his slow motion moments. I wish I were.

Thankfully, I found some footage he took with one of our Flip cameras last weekend, and I was able to relive a breathtakingly beautiful moment that I missed. I am so thankful I have this moment, as belated as it is.

When I played the clip the first time, my heart clenched with breathlessness. So much had occurred in :29 seconds, and I had missed it all.

I have now watched this clip nearly a dozen times (and likely it will be many more by the time I post this). I have choked with regret each time: Why did I not stop in my tracks, grab Skye in a quick-but-tight-big-momma hug, then pull back to look up at him (for he is now taller than I) and say, “God, you are a fantastic young man. I am incredibly proud of you, and I love you so much it hurts.”

Why didn’t I do that?

The cliché answer: I take his life for granted.

The sociological answer: I would have embarrassed him.

The regret-filled answer: I didn’t really see what was happening in those precious seconds – 29 of which are captured here.

Before you watch the clip, I want you to know these things:

• I was in a hurry, trying to accurately locate the place on the Morningside College campus where I would line up for the processional that would lead me to my master’s degree.

• I was chewing gum – something I rarely do – to wish away possible coffee breath before meeting people for the first time. Skye despises the smell of chewing gum, so I try to hide it or keep my distance when I am chomping and he is around.

• I had only become aware of Skye’s presence behind me about 10-15 seconds prior to the beginning of this footage – after he had called out for me to slow up because his dad (waiting in our van with Stross) had sent him with our back-up Flip camera to take images of me crossing campus. I wasn’t sure how I felt about becoming the featured actor in a family epic, for I am usually the one capturing the footage. I love acting, but not in real life, so I when I heard Skye’s assignment, my instinct was to not slow my pace, as that wouldn’t be “real.”

• Because I am all about “real,” I managed to think of something I could share that I regarded as authentic. I chose something about having lost our primary Flip camera earlier that day.

• Finally, I was perplexed about why Skye would run across campus to take footage, because he doesn’t like being told what to do and doesn’t like it when I pull out the Flip camera. He is his own person. I remember a flash of wonderment: “Why is he doing this? Simply because his dad asked, or does he really want to?”

What I can see now, if not in slow motion but through constant playback, is that he did want to. He was proud of what I had accomplished, and he had responded to his father’s request to get footage as a gift to me. He believed I would like having parts of this special day captured for me. And I did … I do.

Skye: “Good thing you are graduating, and that’s what we're talking about.”

Ah, there it is: Slow Motion Motherhood in Skye-time.

Yes, Skye, that should have been what we talked about, as well as how insanely proud I am of you. I love your humor (the sound you made of footsteps “domn-domn, domn-domn”), your capacity for compassion, your creativity and your willingness to put others before yourself. I admire who you are becoming and how you are getting there. And when I mess up and miss some of your best moments, I love how you offer me generous portions of grace – often at your own psychological detriment.

Skye, these are things I would like you to know about this portion of a minute that we shared, but I missed:

• When I heard your voice, I felt excited. I love hearing your voice, especially when you say, “Hey, Mom!”

• When you chuckled, I hope it wasn’t a response to my inattention. I know that you – like me – chuckle sometimes when you are not comfortable and not sure how to react. I don’t ever want to make you that kind of uncomfortable.

• When I offered you a bemused look, I wish had conveyed more appreciation than bemusement. I also which I had not said something that probably only made sense to me; for even though we have lived in the same home for almost 16 years, I bet you weren’t able to interpret the nuance of my flippant remark. I intended it as a compliment, not sarcasm. Every graduate does need a son like you. They would be greatly blessed to have such a person to share life with.

• I also want you to know this: I should not have crossed the street without regard to what you might do next. You likely felt out of place even more than me; therefore, I should not have left you as the one to take the lead when saying “good bye.” Instead, I wish I’d have done exactly what I described above: grabbed you in a quick-but-tight-big-momma hug, looked up at you and said, “God, you are a fantastic young man. I am incredibly proud of you, and I love you so much it hurts.”

I am you know, and I do you know.

And one more thing: I cannot imagine being more proud of you than I already am. Still, I look forward to each day we get to share together, because I know I will be blessed with even more occasions to take pride in who you are.

Good thing someone found that other Flip camera for us, for I plan to continue using it for years and years to come.

“Hey, Skye, wait up! I want to get a really good look at you.”

I love you.

Mom
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Fear

2011-05-19T13:40:00.000-05:00

I am afraid that my capacity
to feel so much
will lead me to a condition
where I won’t be allowed
to feel anything.

That is what I fear.
Not being able to feel everything
I know
there is to feel.

And so I remain afraid
because I know
there is much
to fear.

And that’s the beauty of it.

Relative

2011-05-19T00:38:00.000-05:00

stand in judgment
and see if I care
about restlessness nights
when you aren’t there
as the future weighs
heavy with unknown strain
that prods present pressures
and inflates our current of pain.

raw. real. relentless.
unbounded and unforgiving.

you do not know.
you do not want to know.
not really.
for you understand
you are unable to know.
that is what we know now
at the age you were before this began for us.

it is all relative, relative.
isn’t it?

yet it is our reality.
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Missing Me

2011-05-05T01:18:00.000-05:00

Today – May 4 – has been rough. Meteorologically speaking, my emotional state has been cloudy with isolated showers. And my barometric pressure reading is unseasonably high, even for this typically predictable season of emotional upheaval.

It’s birthday season – the highly anticipated and energy charged time of year when my oldest son, Stross, counts down the days to the May 5 anniversary of his birth. His enthusiasm and joyful glee is contagious, yet not strong enough to fully dissipate my annual angst. And, as I said, this year my angst feels uncommonly uncomfortable.

Part of the reason might be that this year, May 5 marks the completion of my 20th year of a complicated odyssey known as motherhood. For someone who once declared she never wanted to become a mother, that’s a pretty big deal.

Be assured that I have no regrets about having become a mother. At 26 years of age, I entered its unique state of existence willingly, even if a bit wide-eyed. I was mature enough to understand the risks and to accept the possibility of consequences. However, that does not mean I understood the reality of potential consequences nor does it mean I was prepared for them. But that doesn’t really matter, does it? Motherhood happens.

Conception, gestation, labor, delivery, and then baby is born. Ready or not, here he comes, and it’s what he brings with him that sets the storms in motion.

Redefined relationships.

Refined finances.

Sidelined careers.

Clarified faith.

At least those are the circumstances that comprised the perfect storm that Stross’ life set in motion.

I am not complaining, justifying, or whining. It is simply the way it was and still is. It is how I do motherhood.

My rough emotional condition this year seems connected to a greater sense of loss than I normally experience around this date – the anniversary of the day my life inexplicably and undeniably changed forever.

Today, one three-word sentence has infused my thoughts: I miss me.

I shudder at how Dorian Gray it sounds. As if who I am today is some twisted outcome of a deal I made years ago.

I also shudder at how pathetic it sounds. As if I live a stunted version of life, trapped in a past I refuse to let go.

It is neither of those. It is something far simpler. I miss me. In fact, I really miss me today.

Ironically, I am missing a version of me I never had the chance to know. A happily married working mother with a beautiful baby boy whose future stretched effortlessly into unknown but exciting days, months and years.

I remember being a happily married woman. In fact, I still am one – going on 25 years now.

I remember being a working mother too. I am still one of those as well, even if in an unconventional way.

I also remember holding my beautiful baby boy with a future that stretched into unknown days. He’s 20 years old now.

It’s just the package deal wasn’t packaged as neatly as I had imagined it to be prior to May 5, 1991. It has not been effortless, and its exciting days have not been free of shadows about the future – specifically my oldest son’s future and how that impacts our family’s collective future.

On May 4, 1991, I still believed that I would retain a sense of freedom about my life’s choices after becoming a mother. I believed that self-sacrifice would be a choice rather than a daily life condition, and I believed that happily ever would be a reality that unfolded not a state of existence I had to strategize to assure.

Please understand.

I do not hate my life’s circumstances.

I do not resent my son. Dear God, no.

I also do not regret one day of my life that has occurred since May 5, 1991.

I simply miss me. The one that never got to be. I think I just want to know if I would have liked her. I hope so. Because I’m trying really hard to make her proud of the woman – make that the mother – that I have become.

Happy Birthday, Stross. You are beyond a blessing to me. The gift of your life is my personal threshold to all things divine. A sacred mystery.

And so I am left to wonder. About her. About me. About your future and our family’s future.

Yes, May 4 has been a rough day. But May 5 has now arrived; and you, my son, will soon arise and shine like no one else. I have a feeling my clouds will soon be lifting. I also have a feeling I will always miss me … well, her. And that’s o.k. Her elusive beauty keeps me company on nights like tonight, and she helps me be a better mother somehow.

So again, Happy 20th Birthday, my dear, Stross. I love you. Forever.
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Because It Does

2011-04-25T00:30:00.001-05:00

I can think of only two songs that transform me from a merry songstress into a tearful mess long before the final note is sounded: “Because He Lives” and “Borning Cry.” When I see the title of either of these pieces written in a church bulletin, I know that I will be able to start singing the song with others in the congregation, but I won’t be able to finish with them.

It doesn’t matter if I try to sidestep this result, either.

I have tried not singing these songs at all to steel myself from this outcome. It doesn’t matter. When the second verse of “Because He Lives” begins or when I get to whichever lyric of “Borning Cry” might best reflect my current state of affairs, I begin busily wiping tear, after tear, after ongoing tear, trying – with great difficulty – to hide my obvious spiritual groanings from others.

And that’s what happened this Easter morning.

As the 3rd stanza of the first verse to “Because He Lives” began, I felt a familiar lump forming in my throat. Then, as I heard “How sweet to hold a newborn baby” at the start of the second verse, I fully gave in to the emotional journey, having learned long ago that I would be whisked away on it anyway. I have come to think of this transcendent trek as the divine order of the world stopping me in my tracks. No way over it. No way around it. The only way forward is through it, pulled by omniscient power.

It’s as if the One who orchestrated my creation has reached out with an intensely personal, extra-sensory message designed purely for my assurance and understanding.

In the case of “Because He Lives,” I can hear my Grandpa Fred playing this classic hymn tune on the electric organ in his and Grandma Delma’s formal living room. I’m a child of multiple ages – all young – listening for his feet to find the pedals. He plays the baseline notes, adjusting the song’s rhythm to match his capacity to locate them.

To my grown self, it doesn’t matter who is playing the hymn or how much better they can play the song than my grandfather could. I can only hear my Grandpa Fred and feel what it was like to hear him play it, long before the song had the capacity to melt me into a teary-eyed mess.

Joined by my grandfather’s presence, I float into the song’s second verse, becoming a mother who is also the caretaker of a child with multiple, severe disabilities. A persistent sense of dread bubbles a cadence in time with the song’s blissful reminder of how “sweet to hold a newborn baby and feel the love and joy he gives.” Then, as if to deepen the reality of that sweetness, the lyrics offer something proposed to be sweeter still: a blessed assurance that my child can face uncertain days because of a God who lives.

That’s the moment I arrive back to the present time, and my heart cries out in groans that words cannot express. It’s an “Oh, please…” and a “Really?” and a “Give me proof of that now” and a “Thank you” and a “How awesome” and an “Amazing!” and a “Please, please be true” and a “God, I know that you know I know that” and a “My life is painful” but also a “My life is rich.”

It is all of that and even more.

It is my reminder that I face uncertain days – extended periods of uncertain duration that weigh heavy with responsibility for an uncertain reality. Most of the uncertainty is tied to my firstborn son who has come to symbolize the shape of my future. A scary, overwhelming-at-times, complicated-but-necessary-to-navigate future.

Who could possibly know the fullness of what that means better than the firstborn of creation?

And who could possibly understand what living for someone else’s future demands than a sacrificial savior? One who was and is and is to come. Living then. Living now and already alive amid my tomorrows – my uncertain days.

Hearing that my child can face uncertain days “because He lives” emotionally wipes me out every – single – time but not because I hear the words and am fully assured.

Not exactly.

As big as that promise sounds, what I experience hearing those words is ... well ... bigger. I am confronted with my then, my now, and my not yet. An eternal mystery of divine humanity. Even the possibility of that kind of reality is greater than full assurance.

The actuality of Creator and Creation is fully present in such a moment. I am fully present in such a moment. Whether sitting next to my firstborn as I was today, or sitting alone in the midst of others.

While I can recite the lyrics of the first and second verses to “Because He Lives,” I cannot recite lyrics for the third. It’s as if my soul – at attention in the here and now – cannot attend to things dealing with future days. But that is the whole point, isn’t it? As the song itself asserts, uncertain things are nothing to a living God. So why do they need to be anything more than a curiosity to me?

That is the challenge. The difficulty. The overwhelming sensation that brings me to tears whenever “Because He Lives” is played.

I don’t look for this to ever change. In fact, if this morning is any indication, my capacity to hold off my tears – triggered by my thoughts and feelings as the song plays – will only get worse. But, paradoxically, my capacity to embrace the divine order of life gets better. Not easier. Certainly not. In fact, the embracing of what is to come might even be regarded as more difficult. Yet each successful embrace of my uncertain future makes my present life better.

I cannot explain why. I can only verify that it does. And for that I am grateful.
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Puppy Love

2011-04-22T00:53:00.000-05:00

I cannot be classified as a pet person. My only reasons to have ever shopped in a pet store were linked to a few goldfish and a series of Beta during my children’s younger years.

I never had a cat or a dog. I didn’t even have a hamster or gerbil. But I didn’t care, for I never really wanted a pet anyway.

Still I did spent time wondering about a pet’s capacity to feel emotion. Could Man’s Best Friend really be a man’s best friend? And could animals share feelings or merely act on instinct?

A few years ago, I saw something that led me to believe that animals could express feelings. When driving down our street toward home, I came upon two rabbits in the center of the road – one lying dead, the other using his nose to nudge the lifeless body of the other. I stopped my car, waiting for the live rabbit to hop to safety. Instead it turned its head to look my direction, and then looked back to begin nudging his furry counterpart some more. Finally the live rabbit hopped a few feet away before stopping to look back at the fallen rabbit as if to say, “Come on. Let’s go.” Then the rabbit again approached his immobile counterpart, making another attempt to rouse him.

This living being seemed to have little regard for my presence, yet I regarded him with awe. He knew I was there. He also knew his friend could no longer follow. However, he wouldn’t leave. So I began inching my car forward, hoping my advancement would hasten the live rabbit’s departure. Rolling slowly, I kept my eyes on the scene as it played out like a battlefield scene from a war movie.

The imagery pulled at my heart. I decided that animals must know when something is wrong. They may even be able to comprehend that death is final. Therefore, I reasoned, animals might even know when something is wrong with their offspring. Could it be?

I didn’t have to wait long to witness another scene that I believed provided an answer.

A few months after the rabbit incident, I looked out my living room window to watch a young couple leaving my next-door neighbor’s home with a newly weaned Golden Lab puppy on a leash. Mother Lab was standing in my neighbor’s doorway next to her owner who was holding her back by her collar. Mother Lab’s eyes were fixed on the puppy as it pulled back on its leash. The pup attempted to walk toward the house, but the woman held the leash fast. Frustrated, the puppy looked at the couple, then the mother dog, then the couple, then back to the mother dog. Finally the puppy sat on the sidewalk and seemed to whimper. In response, Mother Lab tried to move forward. This caused the woman to tug on the pup’s leash, while my neighbor pulled back on Mother Lab’s collar, using her legs to keep the agitated grown dog inside the house.

Meanwhile, the young woman walked to where the pup was sitting and picked her up. As she headed to her car, the pup crawled up the woman’s body to perch on her shoulder, trying to look back at Mother Lab. The pup was clearly whimpering now, loud enough to be heard through my double-pane windows.

I couldn’t watch anymore. Tears had splashed onto my eyeglasses, fogging any view of Mother Lab or her pup. Yet what I had seen was clear: The puppy didn’t want to leave the only home it had ever known, and the pup’s mother did not want her to go.

Perhaps it is good I have not become a pet person. The emotional demands would drain me. I have a difficult enough time with the emotional demands of human relationships.

Some believe we can learn a great deal from our animal counterparts. But I wonder how practical many of those lessons would be? For instance, what do animals do when their offspring are born malformed? Or how do they care for young that aren’t able to keep up with the rest of the litter or clutch?

I can imagine what they do, but I don’t really know. I don’t think I want to know.

I don’t even know what other human mothers do when those things happen with human babies. I only know what I have been inclined to do for nearly 20 years now. I protect when I need to, advocate when I need to, cajole when I need to, nurture even when I don’t need to, and love always.

Always, always love.

Unlike a family of eagles living atop a tree, Mark’s and my oldest offspring won’t be spreading his wings to take flight anytime soon. It just doesn’t work that way in our human world. In fact, our youngest offspring will likely leave our nest first.

And all that angst I believe I observed from Mother Lab as her pup left home – I worry that I may experience that one hundred fold when my oldest pup ultimately does leave home to live some version of supported independence. There might even be another person pulling him toward a new life while someone else is trying to keep me in place. I sure hope not. I sure hope we navigate that transition more humanely. For now, I can only envision angst and fear of the unknown even though I believe it doesn’t have to be that way.

Call it instinct. Call it emotion. Call it whatever you want. I don’t care.

I call it love. Always have. Always will.

Love.

Love always.
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Annual Personal Performance Review

2011-04-14T06:53:00.001-05:00

It is creeping up on me this year, but earlier than typical. At first, I didn’t recognize what was occurring. Too many other life distractions seemed likelier culprits of my demise.

Yet I’m fairly certain I’ve accurately diagnosed my condition: Stross’ birthday is nearly here. Therefore, my annual personal performance review has begun, and I have no idea how I am doing.

The symptoms have basically remained the same for 20 years.

A fleeting thought triggers a moment of breathlessness – the kind that happens when I get caught off-guard but then regain a sense of presence with a deep cleansing breath.

Or a lingering thought leads me to a land far away, into an existence not yet known, and I languish between a grief that is familiar to me and a type of sorrow I’ve yet to identify.

And then there are the unannounced tears.

I awoke early this morning with a solitary, quiet tear falling from the outside corner of my right eye. It made a cool trek down my cheek before landing on my pillow. Instantly I traveled back in time to a hospital bed where I once laid in the same position with a river of tears quietly traveling from cheek to pillow.

Twenty years ago on the fifth day of May, my life changed inexplicably. Strangely, I have never been hung up on the “why” of it. However, I think I will always wrestle with the “how.”

26Then he said, “Let me go, for the day is breaking.” But Jacob said, “I will not let you go, unless you bless me.” Genesis 32:26

Like Jacob – stressed with the prospect of encountering Esau and thereby coming face-to-face with his past and his future – I wrestle, praying that the One with Whom I wrestle is God and not some shadow of a former me.

Bless me, I demand. Help me retain a sense of hope. Give me a future that matches my present reality. I will not give up until I am assured I am blessed. I will wrestle as long as I have to.

Yet I know I cannot escape such an encounter unscathed. I know it means I will forever walk wounded toward the future my family and I will share. But I believe the blessing will be worth it. At least it has been for 20 years.

I am in for a long bout of wrestling this year. I can feel it. But I won’t let go. I refuse to. Not until I am blessed.

Pragmatism

2011-04-11T11:36:00.008-05:00

Pragmatic.

One person
perceives such
perspective
as proper.

Another
perceives such
approach
poppycock.

Pragmatic?

Whose perspective?

Proper, poppycock or poo?

Oh, bother. Not mine?
But ... YOU?

Acquainted with sorrow, familiar with grief

2011-04-08T23:38:00.003-05:00

I hold respect for Elizabeth Taylor and an affinity for Whitney Houston that have little to do with celebrity but a lot to do with tenacity.

While driving to an out-of-town meeting days after Taylor’s death, iconic images of the violet-eyed legend passed through my memory as the car radio began playing the haunting a capella opening to I Will Always Love You. The lyrics accentuated the sultry earlier voice of Houston, focusing my thoughts on the striking and sensuous early life of Taylor, whose death I had yet to process.

One represented a voice no longer able to be heard even though the one who gave it life still lives. The other personified an iconic face that lived on even after the one to whom the face belonged no longer resembled its visage.

Unparalleled talented. Incomparable beauty. Inimitable lives.

Legends – one living and one no-longer-alive.

I regard both women as more than a metaphor for what was but cannot be again.

They are examples of life continuing beyond tragedy whether the deep heartache came circumstantially or was self-inflicted.

For Taylor the heartaches were borne from life-altering injury, addiction, divorce, widowhood, debilitating illness and personal despair.

For Houston the heartaches are tied to addiction, divorce, illness and personal demons that haunt a complicated future.

I find both women inspirational and relate to both on a level I don’t fully comprehend. My best attempts to understand lead me to my own past, yet I can list nothing comparable to what these women have accomplished, wrestled with or conquered – unless I get to count struggling with grief over a life that felt promising once upon a time but no longer seems recognizable some days.

It is a but-of-course sort of grief that says, “Your life was beautiful back then, but you weren’t fully aware of how beautiful it was, were you?”

But it doesn’t matter, I guess, for who truly does realize life as they live it? Thorton Wilder offered that poets and saints perhaps do – at least some. But I would venture that survivors surpass even poets and saints, for survivors have a perspective that reaches from depths to heights. Surely that makes the milestones in between noteworthy whether measured in moments, minutes or minutiae. Surely survivors realize life more fully as they live it.

Survivors.

They understand that living means embracing a new way of being – a new standard for beautiful. And the beauty of survival is breathtaking. The tenacity of time, astonishing.

If I get to claim any similarity to Elizabeth Taylor or Whitney Houston, perhaps it lies in an understanding that life continues to be wonderful despite it all – whatever “all” might be. Life insists on moving past what I recognized as my life’s previous dreams, toward new dreams that are capable of carrying me toward something more.

Elizabeth Taylor kept making life something more. She showed what it meant to champion the beauty of others who were fighting to survive through her establishment of AMFAR, the American Foundation for AIDS Research. Whitney Houston keeps putting herself out there, giving something more. She continues to influence beauty in others: Beyonce’, Mary J. Blige, Rihanna, Brandy, Alicia Keys, Jennifer Hudson and Lady Gaga. Each has shared they look to her as inspiration for what’s possible.

Perhaps I am on the verge of discovering my something more. My what’s possible.

As Taylor once said: "I don't entirely approve of some of the things I have done, or am, or have been. But I'm me. God knows, I'm me."

She was tenacious, authentic and genuine. And she never stopped fully being who she was. The same is true for Houston. She never pretends to be anything more or less than who she is. That is enough.

I take comfort in that. I admire that.

Remembering Elizabeth Taylor and listening to Whitney Houston that day helped me celebrate what had been – what I knew as my personal past. In doing so I was reminded to cherish what continues to be. But I also know I need to keep finding my way forward. To tenaciously determine what is possible, because life keeps marching on.

Being familiar with sorrow and acquainted with grief puts me in good company.

Grief lingers, but it is love that lives on.

To that I say: Sing it, sister.

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Seasons of Life

2011-03-25T11:04:00.000-05:00

I am honored to have written the cover article for the blog of LivingLutheran.com, an online daily blend of stories, culture and community offered by the Evangelical Lutheran Church in America (ELCA).

Enjoy visiting the site and reading it there.
Seasons of Life

What type of season are you experiencing in your ongoing calendar of life?

Elizabeth Taylor, Whitney Houston, Parents of Children with Disabilities

2011-03-24T19:00:00.001-05:00

Yes, these individuals share something in common. At least according to the way my thoughts align.

Before I lay out my thoughts for your examination, I am curious: Do you see threads of commonality?

I would enjoy knowing. I'll look for you in social media comments and messages, and then tell you about the dots I connected this morning.
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Ancient History

2011-03-24T01:23:00.000-05:00

You want me to tell a story,
but the story you want told
isn’t mine to tell.

Not anymore
anyway.

Maybe once upon a time
I could have given voice
to the memories and
the mission of that place we knew
once upon a time.

But
not anymore.

You will simply have to rely
on your memories.
I have only memories now too.
No story.

No voice.
No mission.
No desire for more.
Not anymore.

I have come to the end of the story
that I might have told once upon a time.
And there is nothing – no one – to tell.
Not about that story anyway.

Just ancient history
to remember
from once upon a time.

- With apologies to librarians and historians for you are right:
Certain stories must be told. I hope they are one day.
Meanwhile, I have begun a new story - one that is mine to tell.
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Hold on to what’s beautiful

2011-03-20T22:38:00.000-05:00

I have learned that at the end of any given day, I can only hold on to so much. I hope I am learning to hold on to only what is beautiful. But it will take a bit more work.

When I have a day of experiences that dredge emotional crap from the bottom of my soul (defined here as the essence of who I believe myself to be), I am sometimes tempted to filter through the muck that has surfaced. I guess I want to search for explanations, to examine the mire’s contents and identify – if possible – what has caused the pain, anger, grief, hurt or frustration.

I know this pain
Why do lock yourself up in these chains?
No one can change your life except for you
Don't ever let anyone step all over you

I appreciate the imagery of a self-created “pain chain” found in the lyrics that Chynna Phillips, Glen Ballard and Carnie Wilson penned for Wilson Phillips’ 1990 debut song, “Hold On.” And as they point out, no one else should be blamed for my unwillingness to change my life circumstances.

You could sustain
Or are you comfortable with the pain?
You've got no one to blame for your unhappiness…
Don't you think it's worth your time
To change your mind?

Basically, the cause of my pain doesn’t get to be the reason I choose to remain in a mired condition. Healing must take place. I must shake off the dredged up crap of life and move in the direction of wholeness. It is the way to happiness. The task is to hold on – day by day – until I break free.

I know that there is pain
But you hold on for one more day
And you break free from the chains

Thank you, Carnie, Wendy and Chynna. At the end of this day, I plan to reflect only on what is good, pleasing, and commendable. Anything else seems a waste of time – a waste of life itself. Besides, I think the chain gang will do just fine without me.

Finally, beloved, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is pleasing, whatever is commendable, if there is any excellence and if there is anything worthy of praise, think about these things. (Philippians 4:8, NRSV)

May it indeed be so.

Freedom of Expression

2011-03-15T22:51:00.000-05:00

What is on your mind?
Are you free to express it?
Free to share the thoughts that make you, you?

I hope so.
I truly do.

For your views are valued.
Your ideas are inspirational.

To someone.
Somewhere.

So share them.
Somehow.

Now.

Holiday Hangovers

2011-03-08T11:27:00.000-06:00

Note: This column first appeared in the winter/spring issue of the newsletter for the Spina Bifida Association of Iowa.

The holidays are over but feelings of frustration may linger. For all the fun that occurs, equal – or even disproportionate – portions of disappointment may have come with the celebrating. If you feel this way, you may have a holiday hangover.

One of the often unspoken realities about living with disabilities (or caring for someone who is) relates to the discomfort of celebrating a holiday in a home that is ill equipped for a person’s needs. Therefore, a holiday hangover can mean exhaustion – the kind that comes from sidestepping dietary needs; lifting and maneuvering in and out of inaccessible homes; wrestling into – and inside – bathrooms that are too small for mobility and medical aids; and endlessly moving chairs, coffee tables, and other types of furniture so a loved one can more easily move through the hosts’ home.

Often the hosts do not know how such an experience negatively impacts the quality of time together. Likewise, the ones most directly impacted do not know the best way to tell them.

Our family regularly suffers in silence, believing it is simply easier to go, make do, and then head home. It’s our attempt to avoid a holiday hangover, I guess. Yet it is difficult to avoid being angry or to avoid expressing anger in unintentional ways. Sometimes we enter awkward conversations about uncomfortable subjects – for instance, what it feels like to always be the people who have to figure things out. However, it never seems easy.

Therefore, a holiday hangover has emotional implications too. For instance, seeing children without special needs and being reminder of how different life has become. Same for conversations with family and friends about school topics, medical issues or everyday activities. Celebrations that involve family gatherings can be, well, complicated.

So what, if anything, is there to do? I suggest being as honest as possible about your feelings and practical needs with those you celebrate with – if you can. You might also volunteer to host the celebrations, explaining that any hassles associated with hosting will help overcome the discomfort related to circumstances beyond your control. Or, you can simply ask family members to be patient with you. Let them know their patience is a gift. In fact, patience is probably the best remedy for a family’s holiday hangover – patience with others and with ourselves.

Here’s to a wonderful new year for you and your family. May your 2011 holiday hangovers be few and your happy holiday memories plentiful.

Joy M. Newcom, in addition to being Stross’ mom, is the author of Involuntary Joy (www.involuntaryjoy.com). In this memoir, she chronicles her first five years as a mother, revealing the often unspoken thoughts and feelings that are familiar to parents and guardians of children with disabilities. She continues to share her personal story via Involuntary Joy’s Facebook page and in her vlog-blog (injoyblog.blogspot.com).

Thief

2011-03-05T01:58:00.000-06:00

You were deliberate, intentional, and calculated.
But you were wrong.
You took what was not yours.
That makes you a criminal.

But who are you to me really?
Did you pass me in a hallway?
Perhaps even smile at me today?
Did you ask a question, and I did I supply you with an answer?
Did you get what you needed?
Did you?

You – likely – needed more than what you took.
So what will you do now?
Do you have a long-term plan
or is your life a string of moments?
Like today.

A chance to
take,
steal,
grab what you believe gives you power
and then simply walk away as if nothing happened.

But something did happen.
You know it.
You are proud – for now.
You got what you wanted.
Finally.

Good luck with that,
whoever you are to me really.

We both know that if we cross paths again,
you will know me, but I will still only wonder about you.

And I will have to
pass you in the hallway,
smile at you,
answer the questions you might ask and even wish you well;
because – honestly – can I do anything less?

And, like you, I will be deliberate, intentional, and calculated.
But I will be right.

And it will suck.

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Love and Other Drugs*

2011-03-02T00:03:00.000-06:00

Mark may not have enjoyed the events of his morning, but I certainly did. Well, one thing in particular: the lovie-eyed looks I got when he was waking up in the recovery room of our local outpatient surgery center. Oh! And the loving, drowzy comments that came with them.

“You are amazing.”

His soft eyes locked on my eyes.

“You are beautiful.”

He added a tired smile, still looking only into my eyes.

“You really are incredible. Just beautiful.”

Wow. His face was so love-filled, his voice so sweet. Whatever they put in his IV, I am grateful for it.

For 45 minutes or so, Mark floated in and out of this state of sedated love, and I heard how beautiful and amazing I was at least a dozen times.

Fortunately he wasn’t recovering from anything more than a test that involved looking at his esophagus and stomach with the aid of a scope. And fortunately, his test results were normal.

The sedative that freed Mark’s passionate side made the test more tolerable. It also made him even more lovable; for in addition to the words he spoke, Mark also kept a soft but firm hold onto my hands. He held my hands in his from the moment he first reached out – quite bleary-eyed –until falling soundly back to sleep after hearing the doctor’s excellent report.

Then, left alone to share our dorm-room-sized, curtained cubicle, I felt like we were dating again. And in the brief spaces of time when Mark drifted back into deep sleep, I gazed at his face with moist eyes. He is still the man I fell in love with.

We are both so different from the 25-years-younger versions of ourselves. But we are still soul companions. We are still in love.

I am so blessed to be Mark’s wife. So blessed to have been his caregiver today.

And you know what? He is not looking forward to the colonoscopy scheduled next week for him, but (forgive me, Mark) I am.

Mark, I promise to meet you in recovery again and hold your hands for as long as you want me to.

How about forever?

* Yes, I’m borrowing the title of a movie for today’s blog, but it seems so apropos.

Joy’s Lament

2011-02-16T10:56:00.002-06:00

Joy is not happy.
Nor is joy unhappy.
Certainly not.
Yet what is it called
when joy is not joy-filled?
Melancholy?
Bittersweet?
For there is a hint of joy in those.
Nearly imperceptible
but there nonetheless.
If this were not so
what would the longing be longing for?
What could sweeten the bitter better
than Joy?
Joy is there.
Yes, even there.
Joy lives in the most unlikely places.
Joy exists even when not joy-filled.
When melancholy.
When bitter longing for sweet.
No matter where.
No matter what.
Joy is joy.
Alive, with the capacity to be so much more.
Joy, where is your hope?
Hope, what shall you do with joy?
For what is joy when not joy-filled?
Melancholy.
Bittersweet.
But alive.
Even in the most unlikely of places.

Plateaus

2011-01-26T10:52:00.007-06:00

I've been plateau perching for so long, I've forgotten the work involved in moving off one or how to enjoy the view from such a vista. Alas, I think it's time to do one or the other. Maybe even both. But as with so much of my life, I am beginning by looking back.

Indeed.

I wonder if I will ever learn how to move forward without first looking or even stepping back? I hope to find out one day. But I digress ... already. Today is a day for contemplating plateaus - particularly the three I am standing on simultaneously (who knew that could be possible?).

Physically: I have been nursing an ailment since November, beginning treatment for it in the first days of December. Part hamstring injury, part sciatic nerve irritation, my literal pain in the butt (only one side, thankfully) does not allow me to sit comfortably for any longer than 10-15 minutes. By then I am wiggling to find a position that alleviates the irritation. I can walk; I can lie down, I simply cannot sit. That is not normal. That is not good. I have been an incredibly faithful physical therapy patient: doing my exercises, taking my ibuprofen, watching my posture, sitting on my pillow, using electrical stimulation when necessary. I am now awaiting an MRI that may shed light on the structure of my back and how it might be the cause of my frustrations. That may bring answers or more questions. At least it's forward motion. That may help move me off this particular physical plateau. Maybe.

However, this next one is fully up to me.

Emotionally: I've been losing weight - intentionally - by faithfully counting calories and exercising as I can (just some walking and stretching given my aforementioned ailment) since January 1. Yes, I am one of those resolution makers, but it has worked - 7 pounds in the last month. Now I find myself stuck on the same number - give or take .4 pounds - for nearly two weeks. That sucks. Note that I listed this as an emotional plateau, and for good reason. I know how to physically lose weight. I just don't know how to stop eating for comfort. Once my body got back to a familiar number (the weight I was for most of last year), it nestled in, daring me to break through my metabolic barrier. To do that, I will have to add more exercising or give up my comfort chocolate in the evenings. Again, I know the math and science that will get me off that plateau (ingesting fewer calories in than I use during the day). I just need to want to. Instead, Mark and I watched The Biggest Loser this week, while eating caramel rolls and drinking coffee. (It was decaf.) I know that won't move the numbers on my scale again. Well, at least in the direction I prefer.

I also know that it may be necessary for me to address a huge mental block first - one that has me nearly convinced I am stuck in vocational Neverland with nowhere to go.

Occupationally: I am, perhaps, so entrenched in this vocational Neverland, that I might need someone to hand me a lighted torch, flashlight, glo-stick or something to help illumine a way out. Not the way out, notice, but a way. I am not void of ideas on this topic, just ideas that feel as if they fit better than what I'm wearing now. I am the only one who can know for certain, but I have always relied on feedback from others to affirm what I first suspected myself. Perhaps I need to stop that. Perhaps that's what it will take to get off this particular plateau, this time. Is there such a thing as self-illumination? I believe so. I just have not thought of plateaus as a dark place before. And I think I always assumed that I would know what I wanted to be when I grew up.

When I first learned about plateaus in an elementary geography unit, I loved them. I even thought I would enjoy living on one - a piece of high flat ground that looked as if it could go on forever. It sounded safe - romantic even (at least a little girl's understanding of romance). I imagined standing with my face into the wind, my hair blowing back while I looked at a glorious sunset. I was a grownup. Tall, with my head held high. And when thinking of that grownup life, I believed I knew what it meant to be satisfied.

Now, 30-some years later, I know it is possible to be grownup and unsatisfied. I also know that plateaus aren't all I imagined them to be. Well, I still find geologic plateaus beautiful. But the metaphorical ones suck - especially the three I find myself on simultaneously. Who knew that was even possible?

I guess I'll continue to ponder plateaus a bit longer, for in the 12 days since I first began writing this blog, I have been unable to finish it. I am actually under no compulsion to finish it now either, but I will.

There are no answers tonight. Not really. Even the results of my MRI (the one I mentioned above and discussed with my doctor this morning) offer little more than proof that my body is aging, and I must determine what do to about it. Basically, I need to decide how I will keep moving despite the restrictions caused by degeneration and arthritis. I can do that. I can.

I will begin by consistently putting one foot in front of the other, doing exercises that develop my strength, and stopping occasionally to re-energize. Oh, and I hope to take time to look at the beautiful vistas in front of me. And I still want to face into the wind while it blows the hair back from my face as I wonder: Who I will be when I grow up?

- Actually published Monday, February 7

She's Making It Through the Rain

2011-01-20T15:34:00.008-06:00

I often say that working as a singing waiter was the best job I've ever had. In fact, if you are a regular follower of the blog, you have even watched me say it when I vlogged with two of my former co-workers (e.g., Paul and Pam).

They, of course, were my husband Mark's former co-workers, too. Clearly, the best part of my job at Carvers Restaurant was meeting him: my soul mate. But a close second was the opportunity to regularly stand around a grand piano and sing my heart out during two to three dinners shows each week (five to seven during the holidays) plus a weekly Saturday morning rehearsal. Great song selections, talented coworkers, charming atmosphere, delicious food. Music wove this enchanted environment together in a way that continues to evoke peace, belonging and joy, eons after we lived those moments in real time.

This week I've picked up a vibe from Pam's Facebook updates. It's a vibe I recognize: Life isn't comfortable right now. The details of what she is dealing with day to day don't match the feelings associated with life as it should be. Unfortunately, that's the way it is when you live year after year with cancer and cancer treatments (and she's doing it as a single mother of a preteen). It's also the way it is when your life has been shaped by the needs of an adult child with disabilities for close to 20 years, and you realize those years will extend either the duration of your life - or his.

When you are living with chronic health issues, the demands of daily life regularly override how you want to feel. You have to fight to keep yourself above the threshold of what you personally find tolerable. Some days you want to be alone with your struggle. Other days you want people to recognize that you need support. Rare is the day you ask for the support you need. You simply don't want to become another person's tidal wave.

In Involuntary Joy, I attempt to describe the sensations that shape this type of existence using water. I acknowledge times I have felt overwhelmed - swallowed by the latest wave created by a personal financial storm, a poor health storm, a dysfunctional relationship storm, or an employment storm. Sometimes a perfect storm of emotions - created by swirls from each crises - threaten to drag me down.

As I describe in the book, I have learned to employ nostalgia therapy when I recognize that I am standing in torrents of rain. At those times, I whisk myself back to when life felt magical and pregnant with possibilities that I had yet to ponder. For me - and for Mark as well - that time, that place, is Carvers.

Here's what I shared in Involuntary Joy:

Carvers Restaurant had been our Camelot, the magical location of our first meeting and subsequent courtship...No matter how many dined in the restaurant's Chalet Room those glorious evenings, I could always count on one pair of eyes to lock on mine across a finely laden sea of glassware and candlelight...At Carver's I had never seen pain in Mark's eyes. But sitting in the exam room room where we learned of our miscarriage, I could see his pain - feel it even. Had it been possible, I'd have transported us back to the place where our dreams had essentially begun-back to a time when he was the tenor with a huge smile, and I was the flirtatious alto who always managed to be near him ...

I sense that Pam is experiencing a flood that feels overwhelming - things caused by drenching emotional rain that shows no sign of stopping. But those like Pam (and Mark and me) who have stood in such a rain know that it eventually does stop, even if we can't anticipate when or how.

We also know that when it stops, we will find ourselves standing with our shoulders back again, with smiles feeling easy again, and words coming out softer and measured again. And, we won't need to cry tears of release just to breathe deeply anymore.

Essentially, we will find that we have made it through the rain, and - as Barry Manilow helped us recognize - we may even feel respected by the others who have been rained on too and have also made it through.

This is for you, dear Pam. I respect you. I believe in you. I am with you. I hope this bit of nostalgia therapy will help you ride out this storm.

Love, Joy

I See ... You!

2011-01-11T21:10:00.006-06:00

The blogosphere's connectivity fascinates me. I guess it's actually the bloggers, or those who create the blogosphere's essence, that hold my fascination. As a blogger, I am even fascinated by myself. It's why I blog. I am compelled to analyze what makes me, me - and then I write about it.

But who cares to learn anything from what I've written other than me?

According to my blog's tracking program, visitors from around the world come and go. Some drop in and leave quickly; others stumble upon an entry and then spend time clicking through or reading through a string of previous ones. Some find their way to my blog because a key term alerted them, while others find their way via a reference from a friend. And then there are my regular readers. When I post something, they read it. Of course, I'm partial to them - whomever they are. If you are a regular reader, please know I am deeply grateful for your companionship on my journey.

I don't get to track readers by name; but I can see where they come from, for the tracking program lists the city name for their Internet service provider. Each time I glance through the roster of cities I am reminded of Miss Sally from my Romper Room watching era. Her magic mirror allowed her to look into the television camera and see children who were watching her at home. Her magic began with a special rhyme that caused the mirror to become transparent.

Romper, bomper, stomper boo.
Tell me, tell me, tell me, do.
Magic Mirror, tell me today,
have all my friends had fun at play?

The credibility of her magic powers solidified with the names of the children she greeted: "I see Cindy and Mary and John. I see Bobby and Mark and Jenny. And oh, look, there's Becky and Marcy and Pamela and Robbie and James and Karen and Paula."

Most days her listing of names felt incredibly long - especially to a young girl who was waiting day after day for her name to be said. But Joy was an uncommon name for that decade; I cannot recall her ever calling out my name in greeting during the after-school hours of the late 60s or early 70s. If she did, I believe it must have been on a day I missed the show. And that's likely what occurred, yes? Because I am certain Miss Sally knew I was there. (At least I strongly hoped she did.)

And I know you are there, dear blog reader. Perhaps you have a blog of your own and are checking out what other bloggers are doing. Or maybe you are having a lonely night and are just doing some surfing in the blogosphere. Or perhaps an internet search or alert of some sort had this entry grab your interest and with one click you entered my blog version of Romper Room. Or you saw I posted something new, so you thought you'd check it out.

Well, I see you. Check the list below to see if your city is named. I've been compiling this list for a few months now; but I'm not confident I have them all, so if I've missed your city, please post it in the comments.

And if you've never seen the wonder of the magic mirror or if you want to relive the experience from your own early days, check out this 1984 clip. Especially listen for the greeting this Romper Room hostess gives to a young woman named Olivia Joy. Lucky little girl!

Ankeny
Burlington
Rochester
Orange Beach
Forest City
Princeton
Marion
Cedar Rapids
Bellevue
Washington, D.C.
Smyrna
Warsaw
Addieville
Riyadh
Sun Prairie
Ames
Honolulu
New York
Hampton
Humboldt
West Des Moines
Wilton
Mason City
Thompson
Lake Mills
American Fork
Oelwein
Cary
Hayfield
Kalsruhe
Lexington
Dallas
Portland
Chicago
Minneapolis
Des Moines
Buffalo Center
Burnet
Chanhassen
Underwood
Lake View
Addieville
Alta
Memphis
Nurnberg
Waverly
Hendersonville
Iowa City
Stoughton
Columbus
Amsterdam
Kansas City
Lagrange
Charles City
Charlotte
Tacoma
De Witt
Hendersonville
Milford
Nottingham
Queen Creek
West Union
Andover
Toowoomba
Mountain View
Darlington
Olathe
Tualatin
Kuala Lumpur
Linkoping
Los Angeles
Alhambra
Saint Marys
Toronto
Houston
Lake Crystal
Algona
Herndon
Wells
Mombasa
Orlando
Urbandale
Johnston
Cincinnati
Delhi
Omaha
Jesup
East Lansing
Cedar Falls
Columbus
Rio De Janeiro
Bothell
Colo
Fargo
Mansfield
Shakopee
Bismarck
Madison
St. Paul
Fountain City
Lincoln
Parker
Walnut
Mankato
Orange Park
Battle Creek
San Diego
Hollywood
Morrisville
Woolstock
Seabrook
Greenville
Blue Earth
Murfreesboro
Sulpher Springs
Commerce
Woodway
Istanbul
Shelby
Normal
Stoke-on-kent
Medan
Eagle River
Dubai
Windsor
Petoskey
Annandale
Lumberton
Carmel
Appleton
Waseca
Scarville

Anxiety: Why Fight It?

2011-01-07T23:56:00.003-06:00

My day. Do I dare describe it for you? Do I let you in on what most would hold as a personal secret?

Yes. I am Joy. It’s what I do.

I’ll need to begin by describing my morning. It took me a while to recognize the phenomena and call it what it was, but here’s what happened this morning: I found myself fighting anxiety that threatened to present itself as a full-blown panic attack. I had not had a panic attack in so long – probably 10 years – that it took me most of the morning to call on those emotional memory muscles and shift into coping mode.

My panic attacks present as a feeling of insatiable restlessness, then a near breathlessness that only lessens if I keep moving. Because constant movement is impossible, I attempt to stop – sit, stand, something – to prevent myself from getting lightheaded; but then, no longer moving, I start to feel achiness throughout my body. Trapped, restless energy, I guess – an uncomfortable feeling makes me want to keep moving again. Sometime during this heightened state of flight, my sensibilities kick in, and I recognize my anxiety. That’s what finally happened this morning.

Had I let my attack mature, I would have been bent over trying to catch my breath and crying large, tension-releasing tears. As it was, I found release in brief, tiny tears – tears of disappointment and a sense of failure. I hate anxiety. It means I’m not acknowledging something, and I take pride in my self-awareness.

It also means I’m not coping as well as I thought, and I take pride in how I navigate (or seem to) the uncommon demands of our family’s existence too. Today’s near anxiety attack must mean I’m not coping well. Obviously. Therefore, the next part of today was spent attempting to answer this question: What is bothering me?

I regard my anxiety as instructive. Therefore, I cannot keep moving forward until I know the answer, so imagine my helpless frustration at not knowing.

Back in my previous panic attack era, my main causes of anxiety were obvious: Stross, insurance, money. My panic attack seasons were also obvious: the first of the year (when insurance deductibles begin) and just before the start of school (when I had to prepare for another year of issues related to Stross’ special education needs).

I learned to cope by remembering to breathe, intentionally exercising and allowing myself to grieve things I believed I had lost. And I gave myself permission to do all of the above as often as necessary.

But none of my traditional causes seem to be the culprit right now, and my coping techniques are – evidently – not working. Therefore, I spent a great deal of this afternoon and evening musing about my life, wondering what to make of the sensation I have about being trapped in a paper bag that I want to punch through from the inside.

As I learned 10 years ago, this isn’t the kind of anxiety that can be prayed away, for casting of cares is not possible. My cares live within my home, personified in human beings that I love deeply. As a decade ago, the best I can hope for - should I attempt to cast cares - is to let go of control to the point of not caring. But how can I do that with loved ones?

Music provided a bit of insight this afternoon when I put on some GLEE to help me with my breathing. As Lea Michelle began singing “What I Did for Love,” I closed my eyes and got lost in the lyrics. With tears spilling from closed eyelids, I attempted to kiss today goodbye and point myself toward some type of tomorrow. I just wish I knew which direction to point or, as with that annoying paper bag, which direction to punch my way out.

I’m confident I’ll figure it out. The suffering will become perseverance, and persevering will further shape my character. My character knows the nature of hope. I’ve been there. I’ve done that. I know that hope does not disappoint.

I am not hopeless. Just caught inside a metaphorical paper bag. I will eventually punch my way out. In the meantime, I’ll breathe, exercise, grieve things I feel I’ve lost … and, now, I think I'll add listening to wonderful music. That worked today. So maybe I’ll wake up tomorrow with a more specific idea of what’s bothering me.

Maybe.

One Foot, Two Foot - Heal

2011-01-06T23:11:00.002-06:00

Twice this fall Stross has needed to have an ingrown toenail surgically corrected. First his large right toe, then his large left one. As part of the healing process, his foot needed to be soaked twice a day in a warm iodine solution and the wound gently scrubbed. The process ended with rinsing, drying, and bandaging.

None of the steps involved could be performed by Stross independently. In fact, after the first procedure, the doctor had me treat both feet even though he had only removed the toe nail on one. The doctor said that soaking alone might be enough to heal the second toe. Unfortunately, it was not enough to spare Stross the second procedure only a few months later, so once again I got an empty ice cream bucket out for a second round of soakings. And again, for four weeks, I washed Stross’ foot.

Each morning and each night I got the iodine solution prepared, helped Stross get into position, and watched the clock until it was time to rinse, dry, and bandage his wound with antibiotic cream.

Stross loved it.

And the holy intimacy of the act never escaped me, even though holiness sometimes did.

Ancient civilizations practiced foot washings for practical reasons. The hospitality shown immediately bridged any discomfort visitors might have had prior to arriving while assisting them in maintaining their health.

Many Christian denominations latched onto this cultural practice, evoking the examples of humility and servitude tied to foot washings that were described in scripture.

Muslims engage in foot washing as part of a ritual cleansing necessary for entering a state of prayer called Wudhu, where purity of body lends itself to purity of mind.

For Stross and me, foot cleansing was tied to healing – his physical healing, my emotional one.

Now his feet are healed, but I am not. I am closer, though. Each year that he grows older, I get closer.

I will forever have a son who needs my assistance in intense portions. Not only can he, at nearly 20 years of age, not wash his own feet, he cannot do many things that most adults can.

Enumerating them here is pointless. And, yes, we are all dependent upon one another for help to get through life. I understand how that makes him no different than anyone else.

Yet his state of dependence is entirely different.

Those who are quick to say “but what a blessing” have likely not been the beneficiary of such a blessed gift. If so, they would know that the blessing must be self-infused. It is an intentional acceptance of life as it is, while denying a wish for life as you once assumed it would be.

When the process of acceptance works, you get the type of involuntary joy I talked about in the book of the same title. When it doesn’t, you simply wait and try again. Perhaps the next time your 20-year-old son’s foot needs to be soaked, rinsed, dried and bandaged.

Stross’ baby feet symbolized hope for his future – a future that would be full despite the fact his feet or ankles could not (and still cannot) move.

Stross’ man feet symbolize hope for my future – a future that will be full despite the fact his life shapes my every move.

His foot is healed; I am not. But I am closer. Much, much closer.

Did You See What I Saw?

2011-01-04T09:37:00.004-06:00

Mark and I sang "Do You Hear What I Hear?" for the prelude to our congregation’s Christmas Eve service. Beyond the lyrics and melody, what most of the people there will likely remember is how the song ended. Our friend Kelsey, smiling brightly and speaking excited words of greeting, joined us on the dias for the final verse and chorus. She didn’t join in singing, but she certainly joined in sharing a message.

I think the song was a secondary delight for Kelsey. She was simply pleased to be with Mark and me, friends she hadn’t been able to hug or speak with in more than a month; for Kelsey, that amount of time might as well be a year.

As for the song, Kelsey heard what others heard. That’s how she found us. And, those who saw what I saw noticed how Kelsey entered the sanctuary while we were singing. In typical style, Kelsey’s feet carried her forward with an eager and ever-so-slight bounce. It’s apparent she loves coming to church. She loves touching base with people in the church who accept her for who she is. I am proud to be in that category, along with Mark.

That’s why I didn’t mind what Kelsey did next, even though I recognize that some in the congregation did.

After taking a few steps into the sanctuary, Kelsey’s head snapped our direction in recognition. I watched her recognize us by sound; and then, after visually confirming that it was really Mark and me who were singing, she did what I anticipated she would. She traveled with charming swiftness to stand directly in front of us, waving and calling out: “Joy!” Her voice carried over our piano accompaniment. “Mark!”

I knew that she would continue to call out and wave until we both returned the motion, if not the greeting. So I waved (a small motion at my hip) while singing and watched Mark do the same.

I credit the added energy of the Christmas season to what occurred next. While Mark and I continued to recount the lyricist’s poetic description of Christmas Eve’s night wind, shepherd boy, and mighty king, Kelsey moved step by step up the stairs that shape the boundary of the altar area until she was close enough for us to touch her outstretched hand.

“Joy! I heard you singing!” She said even as we were, in fact, still singing. And then she hugged the side of me that wasn’t holding a microphone. When our hug ended, I kept her by my side, leaving my left hand around her shoulder while continuing to hold the microphone with my right hand. Mark and I were on the final chorus, and the least distracting place for Kelsey at that moment was to be exactly where she was: by my side quietly listening to us finish the song, oblivious to every other person in the congregation – even though they couldn’t miss her.

I hope most saw what I did: a loving young woman following her heart to a place where she felt accepted.

And I hope those who didn’t see what I saw understood this: The gift of Christmas is a gift of acceptance so that all children might know they are God’s.

Kelsey gets it. Her response to the question, “Do you hear what I hear?” was to coming running to a place she felt accepted. And to anyone who might have been appalled by her boldness, I extend the same invitation. Come on over. Come on up. Come to wherever you feel the love of God is and then revel in the acceptance you find.

Don’t worry about the conventions of “church” or “religion.” The God of the Universe is calling your name, every moment of every day. Open your eyes. Or open your ears to listen. Follow your heart, for you are loved; you are accepted - just the way you are.

Note: The middle photo gives you an idea of what happens whenever Kelsey hears us singing. It was taken two summers ago when our band was playing in a local summer festival. This video below (which I post with her mom’s permission) was made at the same festival this summer. Watching it will help you meet Kelsey. She loves music and loves being part of what music means. Enjoy her joy!

Donut Days and Deep Roots

2010-12-29T23:51:00.005-06:00

Tonight I discovered something about myself that should have been pretty obvious: The fact that our family has donuts for breakfast each Saturday is more than a treat for me. It’s an emotionally comforting ritual with deep roots.

In college, during Mark’s and my stint as singing waiters, Saturday mornings were our time to rehearse the music for our weekend dinner shows. Larry Kussatz, the owner of Carver’s Restaurant and our music director, would always have fresh pots of coffee and platters of donuts ready for us at 9 a.m. We each had our favorite selections – donuts and songs – and we each counted on this weekly ritual, just as we counted on each other to fill in the melody or harmony of our particular vocal part.

As Mark and I reconnected tonight with Pamela Cross Samuels, one of a select few who knows what it felt like to be a Carver’s Singer, I found myself grateful for the comfort my Saturday donut continues to bring me each week. I also found myself hoping that Pam has something similar to comfort her at the end of weeks when she might feel at bit overwhelmed at times.

In the years since we entertained diners at Carver’s (Craig Bennett being such a patron), we’ve all experienced some fairly daunting life detours. The most dramatic part of Mark’s and my detour story is connected to Stross’ birth, as recounted in Involuntary Joy. Yet Pam’s and Craig’s lives have also been defined by moments that are equally as book-worthy.

For instance, HIV has detoured Craig’s life plans while leukemia has detoured Pam’s. Her diagnosis came six months after losing her mother to cancer and seven years after becoming a single mother. Yet it’s clear that Pam refuses to have her life defined by chronic myelogenous leukemia (CML), single-parenthood or life without her mother.

As we lingered tonight – laughing over who we were back then and how we lived out our more naïve existences – we affirmed the rhythm of life and the transcendent power of love. We helped transport each other to happier times, silently acknowledging a fierce, if unspoken, love for one another along with an inability to fully recognize that love for what it is.

Tonight we affirmed there is nothing that can diminish the power of life itself. Not physical and intellectual disabilities, not HIV, not singleness, not single parenthood, not the loss of a parent, not the loss of a job - not even chronic myelogenous leukemia.

And certainly, if we ever experience a week when we begin to feel diminished or overwhelmed, we can count on the revival that Saturday morning donuts and a fresh pot of coffee might bring. Emotional comfort with deep roots. “What would I do without my music? What would I do without my song? What would I do without my music, to pick me up when everything seems wrong?”

Love to you, Pam. Thanks for the memories. And, thanks to you, too, Craig! Let’s do it again. Soon. Life’s way too short. (Don’t we know it!)

Winter Wonders 2010

2010-12-18T17:53:00.005-06:00

I have a difficult time getting in the Christmas spirit without an ample supply of snow. Fortunately, the Midwest's weather patterns have made for a wonderfully white Christmas season this year without a worry of it melting before the happy holy day. Our children have already had opportunities to play in the snow with their cousins, an activity that doesn't become too childish no matter the age of the child - me included. In fact, I thoroughly enjoyed having a reason to run outside to take photos of the crew as they rough-housed and rolled in the fluffy white stuff.

Tonight I was reminded of the full range of holiday experiences we've been enjoying since Thanksgiving. Not long after sunset I ran outside in my stocking feet - with no coat, either - to watch winter fireworks from our front porch in 5º weather.

Only three weeks earlier our family wandered around in the Phoenix area's 70º weather, taking in the sights and sounds of its holiday celebrations. I highly doubt a native of Arizona would have done what I did tonight - the stocking-foot-with-no-coat thing. In fact, a lot of Midwesterners wouldn't have stood in the snow in stocking feet - and I say good for them, the smart ones. I just didn't want to miss the action.

Watching the fireworks appear to light up our Iowa neighbor's evergreen reminded me that our family saw the Tumbleweed Christmas Tree in Chandler, Arizona, one week before it was officially lighted. You can see it, too, in this clip of our adventures.

Fortunately, in this era of YouTube, I was able to see the finished product shining in its full glory, courtesy of another family. I posted it here so that you, too, can enjoy the lighting of the famous Tumbleweed Christmas Tree as it was experienced by a family in the Southwest - likely one who would find it fascinating that there is a small town in the Midwest who lights fireworks in December.

What makes it feel like Christmastime where you live? Whatever it happens to be, I hope you are experiencing the wonders of the season in all their fullness.

Nebulous Nature of Life’s Pivotal Moments: Part 2

2010-12-12T00:32:00.007-06:00

To read Part 1: Click here.

It was late in the spring of 2000, and I was angry. I didn’t know that I was angry though. Not until Mark uttered these words a second time: “Is that what you want?”

I wasn’t exactly sure how to respond. His repeated question hung for a space of time that allowed me to live through the experiences that had gotten me to that particular moment – the way someone’s life flashes before them when threatened.

Did I feel threatened? Mark had – quite possibly – offered me exactly what I wanted and even needed. I had simply to respond: “yes” or “no.”

His question came after I blasted into the video editing bay where he was working on a project for Waldorf College in order to harangue him. It was a long diatribe. Something about the college (who happened to be his employer and our primary source of income) and how we had tied ourselves to a place that had announced a little more than a year earlier that it faced dire financial circumstances. I also included some fierce sounding accusations about how he spent an exorbitant amount of time at the college and that it didn’t seem to be appreciated. The entire episode was tinged with overtones that said I was tired of being the go-to person on certain matters related to our sons’ care.

Only seven years previous, we had chosen this life arrangement: Mark becoming our family’s primary breadwinner rather than me continuing in that role. Me becoming our children’s primary care provider, and our family living in a city with a population that represented 2 percent of our previous hometown.

Stross was 9 and Skye was 5 at the time. And, evidently, I was tired of being the home-based parent, because these incredibly revealing words tumbled accusingly from my mouth: “You know, I could have been the vice president of communications for some company somewhere by now.”

Silence.

Mark and I looked at one another, me unflinching as I – in private horror – wondered where my statement had come from; he unflinching as he gathered his thoughts and then offered a genuine and animated response that affirmed my anger.

“Is that what you want?” He asked, looking part relieved and part frustrated. “Is it? Because if it is, I’m game. Just say the word, and we are out of here. I’ll go to my office right now, type up a letter of resignation and start packing. You mean more to me than this place. A hell of a lot more. And if you’re not happy, I’m not either. So if it’s time for us to leave so you can do what you need to, let’s do it.”

His words were exactly what I needed to hear, but I couldn’t determine if they were what I wanted to hear. I said nothing. He continued even more pointedly.

“Is that what you want?”

There it was again, but this time my life flashed in a dizzy mess.

I did not want to say “yes” just because I was angry – and I could no longer deny that I was angry. In fact, I was something beyond angry. I was not living the kind of life I wanted to live. I had tried so hard not to become a victim of circumstance after Stross’ birth, but I had finally begun to acknowledge what I had lost. Stross’ dramatic needs now shaped mine. He was born with conditions regarded far outside the realm of normal. My life now reflected his realities. No, they were my realities. Non-normal realities. Whatever that meant.

I also could not say “yes” out of a selfish need to preserve an identity that fit about as well as my pre-pregnancy jeans. But I was scared. Mark knew it. He was scared too. He didn’t want to lose any more of me than what I’d already shelved.

I answered using the word that best matched my mood.

“No.”

“So you don’t want that?” Mark asked. “I know you are right. You could have been a vice president. I won’t hold you back.”

“I said ‘no.’”

“Then what is this about?”

“I don’t know.”

That was more than 10 years ago. And I did not know what it was about then. But I do know now.

Two roads had diverged in the woods that was my life. And looking down one as far as I could, I had not liked what I could not see beneath mounds of nettles and undergrowth. However, I could not take the other road either. Instead, I had hoped it would keep for another day.

Yet way leads to way, just as it did years before that moment when we decided to have a child. And then again when we decided to have Mark become a stay-at-home father, and yet again when we decided to move and switch roles, and still again when we decided to have a second child, and still once more when Stross became gravely ill and we thought about moving after he recovered as a way to manage our debt.

I have never been able to figure out a way back. I can only hope to keep moving toward new diverging paths that pose easier choices. And I learned long ago –simultaneous with Stross’s first breath – that it is futile to wonder where other paths might have led.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I –
I took the one less traveled by,
And that has made all the difference.

Can you hear me sighing? I sure hope so, for if you can, that will make all the difference.

Nebulous Nature of Life’s Pivotal Moments: Part 1

2010-12-11T07:52:00.008-06:00

My muse must be messing with me. And he must be into poetry right now, for today – like a few days earlier – I awoke with the stanza of a poem that is connected to a childhood memory marching through my mind. It’s the last part of Robert Frost’s “The Road Not Taken,” a poem I was required to memorize during my sophomore year of high school. (Thank you, Mrs. Johnston.)

Two roads diverged in a wood, and I –
I took the one less traveled by,
And that has made all the difference.

Frost has kept me captivated with the nebulous nature of life’s pivotal moments from my first reading of this classic. The undeniable notion that a person’s life is forever changed by one choice is … well, undeniable, isn’t it? Ask people in prison, mothers in maternity wards, or company presidents now in either confining or comfortable quarters. Their lives changed instantaneously because of a choice they made, even if they were unaware of it at the time.

I’m certain mine has too – multiple times. Make that a multitude of times. Today my muse has reminded me of the moment I continue to ponder most; and no matter how many times I recount or relive that particular moment of divergence, I cannot decide if I took the road less traveled by or the one most people would have chosen. I can’t even decide if my choice was intentional or simply the product of picking the path of least resistance.

Perhaps you will be able to tell.

It was late in the spring of 2000, and …

Stay tuned
Part 2
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The Swing

2010-12-09T22:58:00.001-06:00

It took me a while, but I finally remembered enough words for a successful web search. Now I have the full memory of my mother reciting Robert Louis Stevenson's The Swing every time we would swing together. My memories are locked in at about age 7 to 9, but I know she did the same thing when I would swing in junior high and even high school. In fact, if my mother and I were to go to a park where I could enjoy swinging now - she past retirement age and me in my middle years - she would start reciting this poem. I know she would.

So forgive me for posting this photo again; but it just seems right, for every time I swing - as I did just a few weeks ago when I took this photo - I hear my mother's voice lyrically reciting lines in time to the pace of my swinging. I don't hear each specific word, but I hear her and I connect with the spirit and intent of those life-filled moments.

I think divine communication is like that. I sometimes hear God (or for those of you who like to use this term: a higher power) marking time to the cadence of my life's experiences. I can't hear exactly what is being said, but I hear God and am able to connect in spirit. It is incredibly affirming. Not like the sing-song pattern of my mother's cadence, but a steady reassurance.

Even without hearing words - like when my memory supplies this poem's cadence as I swing to a lyrical beat - I can feel the spirit of a moment as it divinely ties me to some earlier time. And I know what I am hearing. I feel safe. I feel the intent.

But I must remember to make time to enjoy swinging. So also I must make time to dance or waltz or walk or sing or sit or cry with God. Or perhaps even yell at God. God doesn't mind. That's what the divine cadence tells me.

I hope you have such moments and that they help you feel secure - even if a bit scared. Like when you are swinging really high but can hear your mom's voice helping you keep a steady time.

Amen. May it indeed be so.

The Swing
by Robert Louis Stevenson

How do you like to go up in a swing,
Up in the air so blue?
Oh, I do think it the pleasantest thing
Ever a child can do!

Up in the air and over the wall,
Till I can see so wide,
Rivers and trees and cattle and all
Over the countryside—

Till I look down on the garden green,
Down on the roof so brown—
Up in the air I go flying again,
Up in the air and down!

Love every moment

2010-12-06T23:19:00.005-06:00

written Tuesday, Nov. 30, 2010

I devour dark chocolate at some point each day - part indulgence, part coping mechanism; my daily ritual is always comforting. Today I also found myself contemplating a new life perspective, courtesy of the wrapper message on a Dove® dark chocolate single. The message read: Love every moment.

Upon first read, I understood the message as an invitation to love each thing that happens to me during the day – an implication that each moment has worth, regardless of what might be happening at the time. Then came my instant revulsion to that thought by way of my poo-on-that-no-way attitude.

You see, I wasn’t particularly in the mood for such a platitude, for only seconds earlier I had walked out of Stross’s bathroom after helping him with a particularly messy colostomy issue. A literal “poo-on-that” moment. I had not loved that moment nor could I imagine loving such a moment until I had another, far-less-revolting thought: What if the message was not a command to love every moment, but to spend every moment expressing love? Love – every – moment. What if I was being reminded to – just as the wrapper read – love in every moment that I am alive? That is an extremely intense challenge; however, it is certainly something worthy of my aspiration. And, truly, love is what keeps me present so I can do my best work when helping Stross during moments that are far from Norman Rockwellian slices of life.

My more nuanced and more enlightened thought solidified when – not content with eating only one Dove® dark chocolate single – I grabbed for another shiny wrapped treat. The second one's message also conveyed a message related to love: Love rules without rules.

Ah, ha! Perhaps, as I suspected, the first wrapper was not a command. Perhaps it was simply a reminder. I have the option – a choice – to express love no matter what might be happening in my life, every moment of every day. I can choose to love every moment.

That’s a tall order when my attention is derailed by poo-on-you incidents. But that is what I am called to do … regardless. To love with all my heart, soul and mind, and to love my neighbors as myself. This call to love should not be easily forgotten, for it is echoed by every major religion in the world. Even by the candy wrappers on my chosen daily chocolates.

Thank you, Dove® dark chocolate singles. You gave me something new to think about today. Love every moment. I will remember that rule even when life feels as if there are no rules.

Amen. May it indeed be so.

Relationships: Something to believe in

2010-11-29T09:32:00.011-06:00

Over the holidays, someone told me they "don't believe in Facebook." I sorta wanted to laugh, as I don't "believe" that Facebook was designed for people to ever "believe" in it.

Facebook, like Twitter, MySpace and all other forms of social media, are tools for communicating and developing relationships.

I believe in relationships, for I believe we are a relational species; I also believe relationships exist in various forms. Therefore, why not via Facebook?

I think what the young man really meant was that he doesn't believe in spending time online or perhaps he doesn't believe in sharing information about himself in a public forum like Facebook. He may not even believe that the relationships that form through Facebook warrant his time or attention. Those are personal philosophies or beliefs. And, of course he is entitled to them.

I continue to believe in people and continue to feel compelled to share with those I am privileged to have a relationship with. For me, that includes those who might stumble upon whatever I place here as well as those who have chosen to regularly follow what I might post.

During Thanksgiving week, I began to create a list of topics that I am compelled to write or vlog on, because I am thankful for this new medium that allows me to share in a new way, through new forms of relationship. I trust you had a rewarding time of thanks as well. Perhaps you spent a day or two with those you share life with in some form of a relationship. And if your holiday gathering time was anything like mine, you had an opportunity to reflect on the nature of those relationships and how they are shaped by shared beliefs. Or maybe you (again, like me) realized that some relationships are actually shaped more by things you do not share.

I believe that's what I'll begin to explore and write about next. For I have been created to be in relationship and am compelled to understand what that means - both with those I regard as kindred spirits and those who are merely kin.

As always, feel free to share your thoughts as well.

You may be wondering why I posted a photo of my feet that I made while swinging. Well, I can point to this moment and remember what it felt like to be happy. I plan to be even more intentional about happiness this holiday season and throughout the coming new year. I believe happiness is the best measurement of a relationship, whether that relationship is between you and others - or even you with yourself.

So here's to your happiness, and to mine.

Remaining Relevant

2010-11-13T23:24:00.004-06:00

I've been assisting Mark with a project that involves looking through decades of family photos. Interestingly, the images of Younger Me have focused Older Me's thoughts.

I recognize a constant desire for - not just a sense of purpose - but something beyond purpose: relevance.

Then - as now - I hoped to contribute in ways that mattered. And not only where family was concerned, but in every aspect of life. That desire has not diminished with the fading color of my hair. In fact, I think my craving for relevance intensifies with each birthday, even each new year.

What is it that makes me, me?

What do I contribute that matters to those I encounter?

How do I interact and engage and question and provide answers in concert with the people and circumstances that shape my life?

Fascinatingly, those answers change even as they stay the same; for I continue to be who I am - only redefined for a new time, a new era of life.

So what remains my hope?

To remain appropriately and closely connected. In keeping with the times. Relevant.

Do I doubt that is possible? Sometimes. But hope erases doubt, doesn't it?

Hopeful relevance.

Now that's nice.

Amen. May it indeed be so.

Happy November

2010-11-01T10:10:00.003-05:00

I have been writing blogs. They just haven't gotten into written form.

I have crafted:

- one about connecting with the divine through a caterpillar that barrel-rolled across the sidewalk, missing my footfall;

- one about the yellow brilliance of the last blooming day lily of the year amid a row of dried-brown sister blooms;

- one about welcoming people with disabilities into every day life in the simplest of ways;

- one about Reformation Sunday and how I was suddenly 6-years-old and hearing my Aunt Lois' voice as I joined in singing a rarely used canticle;

- one about fear and how it negatively shapes a person's response to divine things;

- even one about November.

I wonder what it will take for my thoughts to - once again - spill out for public viewing. Am I too busy? Am I feeling private? Am I wondering if my thoughts matter to anyone?

I am not sure. Then again, if I knew, would I tell you?

I like to think so.

I like to think that I live as I imagine a writer does - seeing poetry in everyday life.

I also like to think that one day I will live a life that allows me to regularly share the poetry I see.

Amen. May it indeed be so.

P.S. - Thank you for reading ... listening ... sharing ...

I pray that the meditation of my heart and the impulse of my spirit are acceptable in your sight.

Wartburg College - U - rah, rah, rah !

2010-10-23T20:55:00.005-05:00

Of course I have a lot to say about the experiences I enjoyed today. But I don't want to. I would prefer to have these two vlogs say it for me. Of course, what they say to you will depend on how well you know my love for my alma mater, Wartburg College.

The first vlog captures the overall fun of the day; the second vlog toys with idea that there truly might be something known as a quirk of fate - or three.

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Update: Nicole Johanningmeier was also a Page editor and a Maggie award winner!
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Update: Demonstrating another twist of fate, Emily Schmitt informed me today that her father is Steve Schmitt, a high school classmate of mine. Wow!
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What a Difference a Week Makes

2010-10-19T20:42:00.003-05:00

Only one week later, beautiful orange leaves have become a crunchy brown carpet.
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The weather is still unseasonably warm. I am still grateful to be living where there are four distinct seasons.
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Autumn continues to pulsate with the rhythm of life, while its powerful beat continues moving me forward.
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But to where?
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To what?
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Our family visited northeast Iowa again this past weekend, including - once again - a trip to the mighty Mississippi. My soul jumps with recognition when journeying through that part the world. I remember where I came from. Who I aspired to be. Who I am.
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I long for it to whisper secrets of what is to come.
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Plans to prosper, not to harm. Plans for hope and a future.
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Until then, simply rest in love and abide.
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Rhythm of Life

2010-10-11T11:24:00.005-05:00

One of the songs Mark and I sang at Carver's Restaurant during our singing waiter era was Rhythm of Life. The lyrics have remained part of my life's soundtrack, reprising around each equinox.

The rhythm of life is a powerful beat,
Puts a tingle in your fingers
and a tingle in your feet,
Rhythm on the inside,
Rhythm on the street,
Yes, the rhythm of life is a powerful beat

Today I am reminded of why I hope to always live in place that pulsates with the rhythm of four distinct seasons...and I hope to be happy when living there.

*

Don't let Stross' choice of attire fool you. It is a balmy (almost too balmy) 80° fall day. He simply loves his new Notre Dame coat and cannot wait for the weather to become seasonal.

*

What do you hope for on this October day?

*

Restlessness equates danger for me

2010-10-06T01:42:00.004-05:00

I am in a dangerous mood. But before you get excited about what that might mean, know that restlessness equates danger for me. I could say, “I am restless,” but that wouldn’t adequately explain my mental state.

I am the kind of restless (dangerous) that would have me selling nearly all my possessions and moving into a small apartment so I could better focus on the essence of life. Mark likely wouldn’t find that dangerous, however, as we spent the first three years of our marriage living in an apartment no bigger than a two-stall garage (and a small garage at that). But I have a feeling my sons would feel the earth shake beneath them should such a bizarre downsize occur. So maybe that’s too dangerous an outcome for my restlessness, huh?

Yet, I am also the kind of restless (dangerous) that caused a father in Florida to board a bus and angrily threaten the bullies who had been picking on his 12-year-old daughter. He commented that it had “turned (his) world upside down” to know that she, who lives with cerebral palsy, was being bullied.

I get that.

I remember when my son, who was born with spina bifida and multiple other birth defects, was being bullied in middle school. I didn’t board a bus, but I wrote a handwritten letter to the offenders and asked the principal to deliver it to the bullies – those boys. I trust that he did. I also trust that the bullying stopped.

However, I am keenly aware that I don’t really know what happened to Stross during his days at school. I remember fearing what might happen to him during his time before school, his lunch hour and the time he spent waiting for me to pick him up. I assumed he would be safe during class.

If I could, I would have been there to let the bullies know that my son should not be the butt of their jokes. Instead, I put my feelings in a letter and hoped the letter had years' worth of staying power, at least with those two bullies – those two boys. I told the bullies that my son would never have the opportunities in life that they would, and that they would always have the power to make my son a victim. I simply hoped they would choose not to. I needed for them to hear that I loved Stross deeply; that they had hurt him deeply, and that their actions had hurt each one of us – them included – in a lasting way.

I don’t know what became of those bullying boys – now men. But I know that bullies – in general – still exist. In fact, most young bullies grow up to be adult bullies. They just change their tactics and how they choose their targets. That’s dangerous. And it makes me restless, wondering who and what will be next.

Restless … dangerous … I know they are different. I do. But they go together, yes?

The father couldn’t wait when his daughter was in danger. She was in danger. He felt compelled to act; and while he regretted how he chose to act, he didn’t regret doing something that stopped the bullying, even though it brought consequences for him. He moved past a state of restlessness directly into anger.

But I am not angry. At least I don't think so. I am restless. Why? And why do I feel threatened? Why do I have this impulse to sell my possessions and run away?

I can name the emotions I am feeling. I simply cannot identify their cause.

Someone asked me recently if I worried that I exposed too much of myself in my blog. Why, I asked? Should I be worried? I simply share what I am feeling - what I am living through - as openly and honestly as I know how. Is that dangerous? If so, why? I cannot imagine openness and honesty being dangerous, unless there are bullies lurking who regard those as vulnerabilities. Bullies who take someone else’s vulnerabilities and then twist them for their selfish purposes.

Do you want to know the incident that sent my son into shut down mode that day – the day I learned about his bullies? Do you want to hear about the incident that caused Stross, my open, honest and vulnerable son, to begin to withdraw and cry tears of frustration and anger?

During art class, some boys at his table said: “I bet your dad is gay. I bet your dad sleeps with other boys.”

Stross, mistakenly thinking that the bullies really wanted to talk to him in a real conversation, and not understanding the stigma attached to a word like “gay,” offered this response: “My dad slept in his uncles' bed for Christmas.” Stross had been proud that he had something so fresh to share from the bedtime story his father had told him the night before. Less than 18-hours previously, Stross had hung on every word Mark had told him about those childhood Christmases in Kentucky and how Uncle Philip and Uncle Richard had said that, “Nephews make good foot warmers.”

Now, I don’t exactly know what the bullies did after Stross told them about his dad and the bed and the uncles from Kentucky. I just know that I picked up a despondent Stross from school that day, and that Stross lacked both the intellectual capacity and the verbal communication skills to tell me the details of what had occurred. I did my best job of gentle-mother-sleuthing, and after I’d pieced together as much of the story as I could, I took action.

An anxious phone call to the principal at his home.
An evening spent handwriting two letters that I hoped would be delivered.
A sleepless night worried about how Stross would do in a new class section. (He simply could not be near those bullies – those boys – again. Would it even be possible to keep them away?)

There were more bullying incidents for Stross. But nothing as big as the one that caused him to shut down. At least that I know of.

Bullies forever changed my son's life. They changed my life.

The threat of danger hung with us through the remainder of Stross’ middle school years and all the way through his high school experiences. I still recognize tinges of restless fear (I am the one with fear, not Stross) as I watch him being as independent as his life allows.

And now I am restless. It's a dangerous mood.

I don’t like it. I am tired of feeling it, and as soon as I can identify what is going on, I plan to act. No regrets.

Brilliant, bountiful autumn: I take comfort in you

2010-09-26T19:55:00.011-05:00

I take comfort in the changing of seasons. The earth's heartbeat causes vegetation to bud, bloom, fade, and then blow to the ground as sudden as a burst of wind. Comfort exists in knowing it will happen again in due season - as brilliant and bountiful as before.

Autumn is the culmination of all that has been pushing forth since spring. A fantastic feeding of fruits, grains, and vegetables that have come to fruition - fully formed and formidably flavorful.

My fall favorites for feasting? Baked goods made with Wisconsin apples and snacks comprised only of Wisconsin cheese.

Therefore, when autumn comes to Iowa that means it is time for our family to visit neighboring Wisconsin to stock up on ... what else? Apples and cheese. I think of it as our fall forage; my sons and husband think of it as "Mom will soon celebrate Pie Baking Day." This purely personal holiday occurs once (sometimes twice) a year with the date and time unknown other than this: It will most certainly happen on a Saturday or Sunday after we have gone to Gays Mills and Mt. Sterling for apples and cheese.

We took our annual trip today; so sometime soon - when the mood strikes me - I'll begin to peel, mix, fold, roll, and bake at least three to five apple pies with perhaps a pumpkin and a pecan provided for variety.

This annual autumn tradition began - for me - when I was a child. For Mark, it began the year we were engaged, and for the boys, the first fall of their respective births. This was the first year Skye didn't come along with us; and while he was missed, Mark and I knew his absence is part of that inevitable pulling away. He has experiences he wants to live that are separate from us. That's good. That's inevitable. Yet I also believe it is inevitable that part of him will always be called to cross the Mississippi River each fall to forage like his family has for decades.

Our family is back together tonight, and Skye couldn't wait to eat an apple cider donut and then munch on fresh cheese curds, listening to their freshness squeak in his mouth. Those experiences are part of him; I believe they will always call to him each fall when the days grow shorter, the air gets cooler and the land looks richer in a harvest-sort-of-way.

That's as it should be. We grow older. We teach our children what we choose to from all that our parents taught us, then our children choose what they will pass on to their children. But all in due season. I take comfort in that.

May what ripens for harvest in my son's lives be a culmination of only the best of all that has come before - only the best of my good fruits, brilliant and bountiful.

Amen. May it indeed be so.

P.S. Tina Schroyer Berg - It was so good to run into your family and to know that you, too, enjoy spending a glorious fall day (sunny, crisp 50º weather) together. Hunter looks like both you and Jim, but I think he especially favors you! Yay, North High class of ... (Well, you know. I don't need to say.) I hope you don't mind being featured in my vlog. I thought it was so fun that we just kept crossing paths!

The Man is a Genius - I Have Proof

2010-09-23T18:49:00.007-05:00

I realize that wives can sound biased in conversations regarding their husbands. Too many accolades can come off as too much ... uh ... too much ... well, let's just leave it at "too much."

But today I believe I found proof that my husband is a genius. At a minimum, I found proof that he is the kind of professional who stays abreast of the latest developments in his field - digital technology - and that he knows when to believe what is being touted in a trade journal and when to leave well enough alone.

Ok, I hear you, students who lived through the Jaz Drive era in the multimedia lab. He missed on that. But so did a lot of others. Therefore, I am very willing to cut him some slack.

Even with that Jaz Drive decision on his record, Mark still is a genius. I found the proof in a newspaper article titled "Cosmic Communications" from the Sunday, July 28, 1996, Mason City Globe Gazette. It was part of their 2001 North Iowa Economic Odyssey series. The article was written only a year or so after the Internet began to become part of daily life, and the reporter interviewed Mark along with other individuals regarded as local technology experts.

Please check out Mark's quote in the prediction box. While another individual shares the quote (not sure how that works), Mark's solitary genius is apparent in another portion of the article where he is credited with predicting that within five years, "company-wide 'intranets' will become more widely available for corporation insiders to use with a back door to their server on the Internet." Not bad. Actually pretty incredible.

I dare you to read Mark's "prediction" in the quote box and not wonder if he harbored some latent prototype designs that could have been cousins to today's Blackberry or iPhone. Most likely the iPhone or iPad, as he has always been a fan of Apple Computers. Always. Our first computing system was an Apple IIe. Now our youngest is using his confirmation money to purchase an iPad - with his father's blessing.

Really, check it out:

In the future, people will not only work at home with their personal computers, but probably will begin doing more computing with their television set.

There may be one unit capable of providing entertainment and completing work.

People will have the option of choosing with their remote control whether they want to just watch television or balance their checkbook or complete a homework assignment at the same time.

In time, the television, telephone and computer will all be melded together in one unit.

When I finished reading that today, I almost thought Mark might have possessed the ability - 14 years ago - to foresee how Stross would head into the bathroom to do his daily, every-four-hour cares, armed with his iPod and its storehouse of downloaded music, movies and television shows or his ongoing, interactive Facebook conversations and weather updates.

Our sons know their father's technological tendencies. In fact, they possess some of the same. So do many of Mark's former students. In the past 17 years, as Mark has learned, they have too; and those whose minds move like Mark's typically moved on to a career where technology motivates.

So, think what you will. Just know that when I read Mark's pull quote in this article today, I filled with pride. My husband is a genius.

Of course I knew that. But now I have proof.

Happy, Happy, Joy, Joy

2010-09-19T18:30:00.008-05:00

From time to time I, Joy, receive a compliment that sounds exactly like this: “Your parents sure knew what they were doing when they named you.”

Or this: “You sure live up to your name.”

While I am flattered by such a comment, I am not compelled by a sense of obligation. Because my name is Joy, I do not have to be happy. In fact, sometimes, I am not. Sometimes being Joy means being sad or angry. Like last week, for instance, when my name could have been Distraught. That day I was distraught for the best part of an afternoon – until I learned that our insurance company was wrong (as I had suspected). We did not owe them thousands of dollars for four months worth of wrongfully paid healthcare expenses related to Stross’ daily living needs. Thank, God. We did not.

Once they verified the clerical error, I was relieved. Then, almost as immediately, I became extremely tired. Nineteen years worth of tired, in fact. For no matter how well my life might move along for stretches at a time, I know that I can be thrown into instant emotional upheaval over something as seemingly benign as a clerical error – even when I am 98% certain the error is not ours. A 2% portion of doubt can cause a unique version of terror (“Is this the moment we become financially bankrupt?”), even renewed grief. That will always be true. As the mother of a child born with life-shaping disabilities, I am familiar with sorrow and acquainted with grief.

In the instance I shared above, renewed grief looked like this: After the insurance representative apologized for the error, I began to cry. I cried awkward phone tears – the kind that choke your normal speaking voice and have the potential to scare the person who cannot see you. So I forced myself to speak. I didn’t want her to think I was crazy.

“I just want to thank you,” I said. “We will have a new insurance company in a few days, and our family will miss your company.” Sob. Choke. “You have taken good care of us. Especially our son. Thank you for that.” Choke. More tears. More forced words. “And I just want you to know we will miss you.”

It was her turn. She began gently and quietly.

“Oh. Thank you so much. That is very kind of you to say. We will miss you, too. … You know, I don’t even think I got your name before they passed your call to me.”

Now I had to forcefully push out words while trying to hold back a sob ... and a laugh.

“It’s … Joy.”

The irony of my name made me laugh. I could laugh. So could she – at meeting such a miserable Joy. Momentarily miserable, at least.

Let me be perfectly clear: My son’s life is not misery; I am not miserable because of him. Sometimes life brings things that make specific moments miserable. I learned how that can be so, courtesy of Stross, and I thank him for that.

But tonight I am thankful for a new type of understanding. Tonight I am aware that I am not happy. Not really. That also does not mean I am sad. Or depressed. I am just not happy – not content. And it has nothing to do with my children or my husband. It has everything to do with me.

Clarity about my unhappiness began September 7 when I was in Waverly to lead a media relations workshop for rural emergency first responders. The evening before the meeting, I enjoyed supper with some good friends who live there – reconnecting, through them, with periods in my life when I lived with a sense of purpose. Then, before returning home after the workshop the next day, I visited the Wartburg College campus to pick up a dessert and a cup of coffee for the road.

I didn’t go straight to the coffee house, however. I began walking campus. I let my feet take me places that looked new and yet were familiar. I felt the wonder of knowing exactly where I was, even when places looked different. Once I even tried to get lost, but I couldn’t. I knew exactly where I was going even when wandering aimlessly. And I loved the assurance of it.

Please understand. My assurance wasn’t about the physical location of my body as it moved through a familiar place. It came from another dimension. Moving through that familiar place helped me connect to a version of myself who knew exactly who she was and what she believed possible.

I found Happy Joy again. I had not realized I had left her behind.

Happy Joy has actually been with me for at least four decades – long past my days as a coed on that college campus. Of course, I remember her during our engagement, our wedding, our honeymoon, newlywed life, a first job, a second job that began to look like a career, a move back to Iowa, a job that was the start of a career, Stross’ birth (yes, Stross’ birth), and even during Stross’ early years.

Happy Joy even hung in there through some radical career changes for both Mark and me that resulted in a move to a town we likely would have never chosen to live in had a career opportunity for Mark not found him in an uncommon way. Happy Joy loved seeing Mark uncommonly happy, and she loved the challenge of finding a way to stay happy herself. She definitely loved giving birth to her second child, another son who brought her the opportunity to experience what other women did when they gave birth.

Now this is where I need to stop trying to explain where Happy Joy went; because, as I said earlier, she has been with me all along. What I have come to understand most recently, however, is this: Her happiness has not been a priority and that has adversely affected her – me – and our family. It might even be harming her and her future.

Because I know people who have wrestled with depression, I know avoiding depression is impossible. Fortunately, I am not depressed. But, as I said, I am not happy. Not really.

There is good news in this. Coming to the realization that I am not happy has helped me identify what gets me there: a sense of purpose, an opportunity to be an agent of change – positive change – that affects someone else’s life in a way they had not thought possible. Happy Joy shows up when I am being the truest version of myself, and in doing so, I cause something to happen that only I could make possible.

I can list examples of what that has looked like in the past. But I don’t want to here. My personal inventory is simply that: personal. Will I share it with you one day? You bet, but it will have to wait until I finish connecting all my dots. I might need to wander a few more familiar pathways and allow myself to reconnect to a few more times and places where I can remember what it has meant to be me.

But the best news is this: I have invited Happy Joy to join me on this journey. And I have given her a new name: Hope.

Birthday KISSes

2010-09-11T20:53:00.017-05:00

I spent my 46th birthday doing something I would never have imagined in any previous year of life: I went to a KISS concert.

I had a fabulous time.

Perhaps I needed to wait until I was in my 40s for such an experience. Perhaps I simply wasn’t ready for the wonder that is glam rock when I was a teen.

As I recall my life in the 70s and 80s, songs were one thing – bands another. For instance, I remember singing along to every cut on Meatloaf’s Bat Out of Hell whenever someone played that cassette on a boom box, usually on a bus ride to something like a field trip, a speech competition, a music contest or a softball game. Every song on that album was (is) incredible. I found (and continue to find) the lyrical imagery of songs like Paradise by the Dashboard Lights and You Took the Words Right Out of My Mouth inspirational - poetically, metaphorically, and theatrically.

Seriously. For those who have ears to hear, rock has a heart. Heck, rock even has soul.

Still I could not bring myself to buy that revolutionary Meatloaf album so many years ago. A good girl like me simply could not own an album with such a hellish title. But what an awesome, awesome album. So awesome, in fact, that I finally broke down and bought it during my third decade of life. By then I didn’t even need to fool myself into believing that I only wanted it for workouts. I knew I just wanted to own it. Finally. For myself.

So imagine my adolescent conflict over a band that could make your heart ache with a ballad like Beth but was tagged with the demonic descriptor “Knights in Satan’s Service.” Instinct told me the erroneous moniker for KISS was overrated. Yet I remained cautious of being negatively affected by a band that was fronted by a gregarious “starchild” and a diabolical bass player who breathed fire and spit blood from a mouth that contained an extraordinarily long tongue.

I could never have owned one of their albums (as much as I would have loved to) let alone go to one of their concerts. Heavens! What would people have thought? What might have happened to me?

Evidently this year, at 46 years of age, I no longer cared, for I was ready to kiss caution a fond farewell and welcome the wonder of KISS. Credit for this lies squarely with my oldest son, Stross, a card-carrying member of the KISS Army who began lobbying for a KISS birthday celebration in my honor as soon as he learned the band would appear at the Minnesota State Fair –“on your birthday, Mom!” That pronouncement occurred shortly after Memorial Day; my birthday occurred on the Saturday of Labor Day weekend. I gave in to Stross’ suggestion just after Independence Day and then spent a few days musing over what I had done. Fortunately, it didn’t take long for me to understand that I was poised for one of my most magical birthdays ever. I was not wrong.

While I simply could not have gone to a KISS concert back when KISS first began reshaping the way music was made, somehow I could go to a concert of theirs as a grown, middle-aged woman in the company of her sons and her rocker-at-heart husband. I believe I became caught – once again – by Stross’ joy for the stuff of life. Such a gift. A wonderful birthday gift.

I cannot adequately convey how, as a teen, I was ill equipped to take in the multi-sensory sensationalism of a stadium filled with people who were ready to rock and roll all night and then party every day. Yet now I long for those kind of days, grateful that I can still introduce my children to the kinesthetic phenomenon that is KISS – a band no longer marked as Knights in Satan’s Service but, instead, revered as a group of 60-something super seniors (well, at least Paul and Gene) who are still able to capture the imaginations of everyone in a stadium while prancing across the stage in 40-pound glam costumes that feature 7” platform shoes and dramatic full-face make-up. And it must also be noted that they are still fully capable of flying into their light riggings to play soaring riffs that remind everyone that God really did give rock and roll for the pleasure of everyone.

That night, when the stadium lights went dark and the announcer requested that we all get ready for “the hottest band in the world,” I did not get goose bumps. However, when the stage lights came up and the music swelled, my eyes locked onto the lighted KISS backdrop – still a classic – and I involuntarily smiled the entire time a hydraulic lift slowly moved the band down to the stage amid thunderous applause and cheering. I was at a KISS concert. Me. Thank you, Stross.

That beautifully cool evening, one of summer’s last, was just right for an outdoor concert. A time to kiss things of the past goodbye while welcoming a new year of life – the 46th year of my birth. Of my life.

Had it been a hot summer night, I might even have been ready to offer my “throat to the wolf with the red roses.” But it wasn’t a night for Meatloaf. It was a night for KISSing. More specifically, for collecting birthday kisses – from my husband, my youngest son, my oldest son; and yes, ladies and gentleman, even – metaphorically – from “the hottest band in the world: KISS!”
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Who knows what the coming year will bring for me? Most likely, something I would never have been able to do when a young woman. And isn't that simply wonderful? Isn't that the way it should be?

Rock and roll, baby. I say, "Bring it on!"
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My Birthday Gift to You

2010-09-04T00:14:00.002-05:00

Stross has a beautiful singing voice. We are daily reminded of that, as he sings through most of his day. Sometimes, like when he is in the bathroom completing his daily medical cares, he sings with a full, robust voice.

However, Stross is an elusive singer. By that I mean that you have to catch him singing, and you have to be an audience he trusts. Command performances are not this thing.

Well, there was a night back in May when he serenaded Mark and I with his rendition of "Beth" by KISS. That was the first time he a sang solo for anyone; I am glad it was for us. The performance happened at his initiative, and it was wonderful. So sweet. So pure. But I wasn't able to record it for posterity.

So ... a few weeks later we were riding in the car as a family. It was Mark and my anniversary, and Stross told us he wanted to sing "Beth" for us again as our gift. Because Stross sits directly behind me in our van, he couldn't see that I had grabbed the Flip camera and was capturing his voice (and his chatter) as he sang. That's why the video looks strange. I added a special effect on the imagery to distort the seat upholstery and the side of my door. They were too distracting. I only wanted the audio. I only wanted to preserve the moments filled with Stross' singing.

That brings me to today.

Today - Sept. 4 - is my birthday. I can guarantee that Stross will offer to sing "Beth" for me again as a gift. Guaranteed. I promise I will tell you why I am so confident about this in a future blog - once I have proof that I am right. And, if I am wrong, I will tell you that too. (But I won't be wrong.)

And I am so looking forward to my gift.

Until then, I see no reason that Mark, Skye and I are the only ones able to enjoy the delight of Stross' gift of song.

Please consider this my birthday gift to you.

The last ones dancing

2010-09-02T17:44:00.013-05:00

Now that I have a Flip camera, it seems I have a difficult time not capturing certain moments of life as I see them unfolding. And so many things seem to unfold in the intense moments just before a bride walks down the aisle. Same for the intimate moments of the ceremony itself and the instantaneous moments that occur once the celebrating truly begins.

Our family attended the wedding of a former student near the end of August. I caught some of it on video; the bride gave me her blessing to share it with you. If you choose to watch it, you still won't be able to see what I saw. For, like other married persons, I experience weddings as a time of personal reflection. This day was no different. Well, other than the fact that on the way to the wedding, Mark and I argued in the car - loudly. Yes, we exposed our children to the nonsense of a marital fight. I would use the word "disagreement," but who would I be kidding? When a husband and a wife argue, it is a fight with words. Someone wants to win.

Am I ashamed our sons were captive to such? Yes. Does that mean Mark and I will never do such a thing again? I hope so. But odds are against it. We love intensely; we fight intensely. We make up reluctantly, but intentionally. We try to be sure our sons get to see the "it's all better" part too.

Of course I cannot remember what was so important to be right about. After all, winning is about being right. Right? It was something totally stupid, I am sure. I have a feeling if I ask either of our sons, they could tell me. But I won't ask. Who wants to dredge then reexamine stupidity? Not I.

What I do remember from that day is realizing that Mark and I are extremely different from the blushing bride and bursting-with-pride groom we were in 1986. On the Friday of Memorial Day weekend that year, we stood arm-in-arm, listening to the officiant of our wedding, Rev. Larry Trachte, declare that May 30 was "a day marked with joy." Then, as newlyweds during Mark's seminary years, we became Mark and Joy. I'd even say that the experiences of that time period turned us into Mark&Joy - a symbiotic couple whose relationship further deepened and solidified after a miscarriage and the birth of our first child only a few years later.

Nearly 25 years since we said our own "I dos" (I believe we actually said "I will"), it remains difficult to know where one of us ends and other other begins. That isn't necessarily good.

During the summer of 2000, we treated ourselves to some marriage counseling sessions and discovered how intensely entwined our relationship had become. We had not lost our individual identities, but we had to admit that Stross had caused Mark&Joy to become exponentially more important than either Mark or Joy.

That is still true today. In fact, I can't imagine it not being true, and I'm not sure if that is necessarily good, either. But it is, what it is, as they say.

Here is what I do know. When Mark takes a hit, I get bruised; and when I get cut, Mark bleeds. What's more, if someone dares to bare his or her teeth our direction, it is not clear which one of us will have the most difficult time not biting back.

On the day of this wedding, once we had time for tempers to cool - courtesy of a wedding aura - Mark and I welcomed the opportunity to come together at the invitation of the dj: "All married couples, come join the bride and groom for a special anniversary dance." And had we not willingly walked to the dance floor together, our sons would have insisted.

What occurred next, however, brought even more perspective. The dj kept announcing criteria for which couples could remain on the dance floor: "Everyone except the bride and groom who has been married X number of years or less, please have a seat." Finally, four announcements of time increments later, guess which couple was almost the last one dancing? Mark&Joy. According to the bride's estimate, we outlasted everyone but the groom's parents.

This silly dancing game reminded us that long marriages are, indeed, rare. And that, at nearly 25 years, our marriage might be as rare as we have always believed it to be.

When we vowed to spend our lives with one another one quarter of a century ago, we had no ability to comprehend how different we would be from the young man and young woman who stood facing each other, hand-in-hand that day. If that tall, handsome, smiley, Southern Baptist man came to find me today, I'm not sure I'd know what to do. I'm confident Mark would have the same difficulty if he found himself face to face with the dark-eyed, daintier, dimpled darling I used to be.

I wish I could have done a better job capturing all the moments that have shaped who we have become. But I would have needed a Flip camera capable of capturing faith. No piece of film, no byte of data can ever make that come to be. Memory even fails. But that doesn't matter, I will never forget what I have. It is exactly what I hoped for nearly 25 years ago: a life partner who continues to stand beside me no matter what life threatens to throw our way. And his faith in us and our future remains as fierce as it was so many years ago.

For a guy who grew up not going to dances, he's sure an incredible dancer. And I'm incredibly blessed to be the one who gets to dance with him. I sure hope we aren't taking it for granted that - as on the night of that wedding - we are becoming some of the last ones still dancing together.

"For I know the plans I have for you ... plans to prosper, and not to harm; plans for hope and a future."

Dear God, search us and know our hearts; test us and know our thoughts. See if there are any wicked ways in us, and lead us in the way everlasting. And, dear God, please keep us close. Allow us to keep feeling your heart while we dance for we wish to remain with you through it all - until the last ones dancing.
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A Simply Complex Personality

2010-08-27T19:20:00.012-05:00

When Dr. Kelli Gardner taught in the psychology department at Waldorf College, she invited me to participate in an exercise for her Personality course. It involved allowing students to ask me questions – any questions they wanted – and then having them analyze what my answers might indicate about my personality.

Kelli, having read Involuntary Joy, correctly assessed that I would be open to such an exercise. “Not many people would be willing to do that, but I thought you might,” she had said.

Willing? How about eager? I loved the intent of her proposed exercise, and I think Kelli knew that I would.

I won’t lie. I won’t hide. And the safest topic for me to neither lie nor attempt to hide anything about is … well, me.

Is that a good thing? I like to think it is. In fact, I’m fairly Socratic that way. According to Socrates (c. 469 BC-399 BC), an “unexamined life is not worth living.” Centuries of philosophers have argued the meaning of his statement. I ascribe to the thought that living in denial of the motivations or circumstances that shape our thoughts and actions is a waste of time. A waste of life.

Life is each person’s best teacher. And, again like Socrates, I am fascinated by epistemology, or the nature and study of knowledge. Where does our knowledge come from? What do people believe they know? What do people know?

Ultimately: How do we know what we know?

Ironically, I have always thought one of my greatest personal strengths is my awareness that there are things I cannot claim to know. And once I identify an area of deficiency, I want to spend time collecting knowledge. I want to begin to understand. To know.

If you haven’t figured it out, the process of asking questions and then identifying answers invigorates me. And, as with the Personality course, answering questions about myself with honesty and integrity is exponentially more invigorating. If the reason I feel that way hasn’t become obvious to you, it soon will. Keep reading.

My life – as cliché as this will sound – is an open book. But each book is open to an individual reader’s interpretation, isn’t it? One person can read what is regarded as a classic – say Mark Twain’s The Adventures of Huckleberry Finn or Lousia May Alcott’s Little Women – and share in the awe of what those authors have brought to life on paper, while another person may declare their work as “drivel,” “inflammatory,” or even “scandalous.” Or take a more recent book: Eat, Pray, Love. Is it an inspirational memoir or a selfish diatribe? I guess it depends who you ask.

What is that about?

I guess I only know how it works with me. I am driven to examine my motivation, others’ motivations, my strengths, my weaknesses - even my personal demons. Mostly I love to search for the boundaries of the bigger picture, if you will; then wonder if boundaries actually exist.

As I’ve matured, I have witnessed – make that have experienced – that this manner of living can have consequences. My little sister, who has arguably watched firsthand longer than anyone else, recently said it this way: “Joy, you are a complex person who is difficult for people to understand. You like to use sunshine as a disinfectant and not everyone is comfortable with that."

Yep, that pretty much explains it. Except I think my approach is simple – not complex.

Let me clarify: I don’t see myself as a complex person. But can anyone really see himself or herself as others might? Probably not. So I must be – to some people anyway – complex. And, in fact, I am certain other words have been used to describe me as well. Recently I heard some fairly hurtful descriptors for me: “dark,” “snide,” “evil,” “backstabber.”

Had the words “arrogant,” “assertive,” “impulsive,” “forceful,” “passionate,” or even “selfish” been used – I’d cop to each one. I can be each of those. But I don’t believe I have “dark” or “evil” in me. And backstabbing someone is not my modus operandi. As probably too many people have learned, I am the person who will call you at home, walk to your office, or push for a chance to meet in person to talk through something that appears to be an issue of miscommunication. I want to deal with it in as simple a way possible – well, simple according to my complex way of being.

Oh, and if someone reading this believes that - contrary to what I just said - I've actually avoided having a conversation with you about something, that is likely true as well. But only because someone in authority told me they wished I would "drop it." (And it was really, really, really, really hard for me to honor his or her request.)

Remember the sunshine disinfectant? I want to get everything out in the open – to talk through things until it seems no more words can be said on a topic. I don’t wield anything other than words. However, I know words can cut like a knife. That’s why I try to choose my words well. Obviously, if I’m labeled by some as “evil,” “dark,” or “snide,” I’m not good enough at it. That’s likely why, sometimes, I simply end up making things a whole lot worse.

Crap.

Life really is more complex than I have wanted to believe that it is.

So, dear Socrates, what’s a girl – a woman – a mom – a daughter – a wife – a friend – a teacher – a writer – a student-of-life like me to do? Consider me as Plato or Aristotle. Consider me even as Theophilus, a friend and student of God, for, my dearest God: I want to know.

Let’s get busy talking, thinking, examining. Let’s not waste the essence of life.

I would like to believe I am capable of getting better at interacting with others. Of having their perceptions of who I am more closely resemble the person I believe myself to be. However, will achieving that end mean I will no longer get to be who I am called to be?

For instance, when asked my opinion, I will tell. When asked my thoughts on a topic or how I arrived at my understanding of that topic, I will tell that too.

I am not sure I can stop being who I am.

I mean: I don’t know if I am capable of not saying what I think - especially when I see an issue of injustice, inequity or ineptness. I may not wait to be asked my thoughts. I will likely simply say them – and I will also, most likely, be insensitive when I offer my opinion. That’s part of what it is to be me. It doesn’t mean I am not working on developing sensitivity. It simply means that my inability to be sensitive is rather complex.

I know insensitivity is wrong. I know arrogance and selfishness are wrong. Yet I find a way to be those things anyway – even if in socially acceptable ways. Like talking only about myself for more than an hour to a class of students taking a course called Personality - and loving that the whole time the focus was on me. Or writing a blog where I tell about my life using my thoughts about issues that matter – if only to me.

Finding a way to be accepted for who you are. It’s as simple as that, isn’t it? Or it is simply that complex.

I used to think that life was simple. Now I live the complexity of life.

And I guess that – as with the Personality course and my personal blog – I need to find a safe place to be me, for an unexamined life is a waste of life; and it is nearly impossible to examine something sufficiently while living in shadows or places where light and sunshine disinfectant are not appreciated. As my little sister reminded, not everyone is comfortable with that. Well, let’s be totally honest: They are not comfortable with me.

As I approach my 46th year of life, I am keenly aware that I have a whole lot more life to live – days not meant to be wasted, but fully examined and used in a manner to which I feel called. It is really that simple – or it’s that complex.

How about this: When I figure it out, I’ll let you know. I’d love to tell you all about it. (Did you have any doubt?)

August: My Quiet Place

2010-08-10T18:28:00.013-05:00

I am in a quiet place again, wondering if this state of mind may be one of my life's seasonal certainties - unavoidable August, if you will. My least favorite month of the year.

My youngest son might take offense at such a label, for one of the Augusts of my life brought him into our family. And other than the long days of doctor-ordered rest that were prescribed to combat pre-term labor, that August was pretty fantastic. Almost like the Augusts of my childhood.

When I was a youth, my parents - both history teachers with an affinity for America - took my sister and me on epic tent-camping vacations throughout the country at the start of each August. One year my dad had us follow the path (sometimes the actual ruts) of the Oregon Trail. Another year we visited as many national parks and landmarks as possible in two weeks: Badlands, Mt. Rushmore, Yellowstone, Glacier, Grand Tetons. The August before my 16th birthday, the summer that Christopher Reeve and Jane Seymour starred in Somewhere in Time, my parents took us to Mackinaw Island, the film's romantic location, where they tolerated my teen angst while wondering how many more years I'd willingly join them.

No matter the arc of our journey, our travels would always bring us back by mid-August in time for the Fayette County Fair. I would spend that week of August helping my dad coordinate and run all the fair's special activities: horseshoe tournament, spelling bee, rolling pin throw, nail driving contest, sack race, pancake flipping contest, and an amazing amount of events more. Those were really good Augusts. Even the August prior to my 8th grade year when - sometime during my responsibilities at the fair - I discovered that I would need to begin shopping in the feminine hygiene aisle.

Where did those awesome Augusts go?

This many years later, even that august supply aisle is a distant memory. I wonder when August began to feel like an obstacle - a time to live through in order to get to some place else.

When the words "quiet place" announced themselves in my mind today, I remembered that I had written a blog with the same title already. I searched to learn when and discovered that I had written that
A Quiet Place blog during one of my life's Augusts: 2007.

Even that particular quiet place seems a lifetime ago; and in a way, it is. Involuntary Joy had just come out, and I had decided to move ahead with its second printing. By the next August, I had voluntarily put the book's momentum on hold to answer what I had perceived as a vocational call. Evidently I was in such a quiet place that August - 2008 - that I wrote no blog entries at all that month. But then, in mid-September, I emptied my heart into a blog that spoke of my frustrations as I hoped for a future.

And then there is last year's August - August of 2009. In the months previous to that August, I had fallen into such a quiet place, that I'd gone fully silent. I had written only one blog entry in May and one in June; both were republished pieces that I had originally written for others. But by September I was ready to live out loud again, letting go of things that no longer fit while looking for new undertakings to replace what felt lost.

From then until now, this InjoyBlog has been my lifeline. A safe place to be me: candid, introspective, honest, analytical ... vulnerable. I hope I can keep it that way. I hope I can resist the urge to fall deeply quiet again. Or maybe being quiet for a time - especially in August - is inevitable. Maybe it's my August thing.

Those of you who follow my InjoyBlog regularly - officially or unofficially - might recall that I regard birthdays as High Holy Days. Well, guess what. September is coming and all that month means to me: a time of review, renewal and rebirth.

I can hardly wait. Perhaps that is why I am in a quiet place. Perhaps this is my August of Anticipation. I hope so. And I guess there is only one way to find out: I plan to listen for lessons that linger in this August air, waiting for September to arrive.

September. My favorite month of the year.

Hey, September. I am looking forward to you and the possibility that you might bring a new way to live - maybe even a way that makes the month of August pretty awesome again.

Amen. May it indeed be so.

Sweet Corn: It's an Iowa Thing

2010-08-05T01:46:00.006-05:00

Iowans take many things for granted: four distinct seasons, quality education, beautiful sunsets, lush vegetation, family farms, county fairs, a median city population of less than 500 (true!), and sweet corn.

Sure, we may occasionally take a moment here and there to quietly breathe a humble breath of Iowa thanks. But in the same way that you can't recognize how tall your child has grown without looking at last year's photos, Iowans can't always recognize how blessed we are to live in a state where - as a friend who recently returned here for a visit said - "it is so green your eyes hurt."

A short drive on any Iowa highway is a reminder that farmers defined the boundaries of Iowa's interior expanses. They cultivated acres and acres of soil whose beautifully blooming prairie flowers hinted at the rich potential awaiting their labors. Farmers continue to define Iowa. If anyone doubts that, just watch what happens when August rolls around acting like a plentiful prelude to a promise-filled harvest season.

Few can understand the cultural connectedness of Iowa's agrarian heritage. How families gather to share in traditions shaped by food. And not just any food, but food from a land of bountiful blessings: hog roasts, strawberry festivals, beef barbecues, sweet corn feeds. Each gathering a celebration of food and the abundance of life lived well.

For our family, the first week of August typically means a trip to my aunt's and uncle's farm to freeze sweet corn. This year we - my family, my parents, my aunt and uncle, my cousins and their children - packaged more than 130 quarts. And while we picked, husked, silked, boiled, cooled, cut, and packaged, we also talked, remembering what it means to be related and remembering how to relax even when your body has grown tired from a good afternoon of shared labor.

Thanks, Aunt Lois and Uncle Chuck. Our freezer is full, but our hearts more so.

Sweet corn. Sweet life. It's an Iowa thing.

Graduation Tree House Celebration 2010

2010-08-02T15:05:00.006-05:00

Life has an ebb and flow. A yin and yang, if you will. In academia, that can be illustrated in many ways. However, one of the most profound ways for me each year is when one class of students graduates, then only weeks later another arrives.

Quite a few of this year's class left right after graduation in May. However, a handful of students - those who took their studies as part of Waldorf College's three-year communications degree - completed their 8th semester this past week. And, like every year before, we enjoyed a celebration barbecue with them in our tree house to honor their accomplishments. Also as in years past, we were pleased to have a reason to spend just a little more time with our graduates before each one drove off campus for the last time as a student.

I have yet to meet the incoming freshmen. But I know fairly well those who just graduated and left Waldorf College to encounter their future: Brandon Aschinger, Andrew Blum, Mary Dickman, Robert Farland, Andrew Johnson and Tyler Snell. Thank you for sharing your lives with us. We are richer for it. Please keep in touch. We will love to learn where life leads you.

May heaven's richest blessings, crown every passing year.

Stross Goes to Scout Camp: The Complete Series

2010-07-31T11:33:00.007-05:00

There are about 800 copies of Involuntary Joy in circulation. Those of you who have read it know that it tells the story of my first five years of motherhood. But it is not only a mommy memoir. It recounts how Mark and I met and how we forged the earliest years of our marriage. It also shares what happened to us individually as we navigated the perfect storm that Stross' birth set in motion, and how we learned to grieve things that we couldn't fully understand we had lost. Perhaps it also shows how we - somehow - have managed to stay together.

My motivation for writing Involuntary Joy was simply to tell a story that life had not yet allowed us to share. I sensed there were countless other families in the same situation - wanting people to know what had happened to our lives because of a child with extraordinary needs. I was simply willing to bare it all. To write things that people sometimes fear to say aloud.

It struck me that I did that again this week by sharing my day-by-day account of what it took for us to get Stross through Boy Scout Camp. These blogs have come the closest to me writing the sequel to Involuntary Joy that I sometimes get asked about. And unlike a book, you get the videos too, so you can see and hear Stross for yourself.

Maybe there will be a real sequel to Involuntary Joy one day. I don't know. I guess I would first have to know that people would really want to read it. But please know this. I am deeply thankful to those of you who traveled our Boy Scout experience with us. You dared to share in our vulnerabilities, and I trust that you - in some way - felt it worth your time.

I believe it is too easy to look, smile, and then either say or think something like: "I don't know how you do it." Or, "God never gives you more than you can handle, does he?" Or, "I admire you. I sure couldn't do what you do." Or even, "Such a blessing. God knew what he was doing when he gave Stross to you."

When I mentally prepare my response, I always - always - resist the urge to rebuff. I know that the person who is sharing the statement intends it as a compliment. I know that. I do. But it always feels like Mark's and my experiences have been lessened in someway - edited to a manageable Hallmark After School Special.

What I hope to accomplish whenever I write about Stross is to invite others to really share the stuff of our lives. It's my way of saying:

• Do you really want to know how I do it?

• Have you ever taken the time to really consider what you would do, the choices you would make, how you would live your life differently because many things you took for granted are no more?

• Do you want to know what I think about your notion of a providential God?

• What is your idea of a blessing? Let's compare notes and allow me to show you how far down the rabbit hole goes.

So, thank you, again, for taking the time to share in our lives this past week as we lived through the range of emotions and experiences of Boy Scout Camp. I am strengthened by your companionship on our family's journey.

When I get the chance to speak to students, educators or medical professionals, I try to explain what it means to live as if life is ready to swirl into a perfect storm. It may seem cliche, but it remains the best metaphor I have for sharing the turmoil of life with a child who has disabilities. Finances, marriage, employment, friends & family, faith - it all regularly gets thrown into turmoil around some issue that places your child in the eye of the storm.

If you know of a family who is also moving through life amid a perfect storm, please share this series with them. It might renew their hope in the future as it has for me. Or it might, simply, let them know they are not alone. And, if you are able to share with them any new insights it has provided you about how they might be moving through life, your words will come as a valued gift. Remember to use these words: "Is that how you might feel too? I guess I haven't known."

I don't know when I'll have such a series to share again, but I will continue to regularly post about our everyday lives. I look forward to "seeing" you whenever you come.

Stross Goes to Scout Camp: Day 1

Stross Goes to Scout Camp: Day 2

Stross Goes to Scout Camp: Day 3

Stross Goes to Scout Camp: Day 4

Stross Goes to Scout Camp: Day 5

Stross Goes to Scout Camp: Day 6
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Stross Goes to Scout Camp: Day 6 (in a series)

2010-07-30T12:37:00.007-05:00

Boy Scout Camp – Day #6
Nighttime, Friday, July 23, 2010

Today I got to see and experience a little bit of what camp was like for Stross and Mark this week. But only a little bit.

I am fully aware that everything that has happened for Stross this week absolutely could not have happened without Mark. My contributions pale in comparison, as do those of the Scout leaders and camp counselors. Sure, we could say it took us all working together. But, really, without Mark, nothing else could have happened as easily or with the focus on what really mattered: making Stross’ dream of attending a real Boy Scout Camp come true.

Mark and Stross were up at 6:20 a.m. and on the road back to camp by 7 a.m. Mark slept soundly last night even after taking two fairly lengthy afternoon naps. He was beyond tired yesterday, but his time of respite had him rejuvenated enough to head out the door in plenty of time for Stross to get to his first session. In fact, those at camp worked with Stross today to help him catch up on what he missed yesterday, so by the time Skye and I arrived at camp, courtesy of a ride from my sister, Jill, Stross had everything punched on his card: a rewarding accomplishment. But, again, it didn’t happen easily and not without a great deal of support for Stross’ brand of independence.

A day is coming – sooner than Mark and I care to admit – when we will need to broaden our circle of support even wider, entrusting others to help us keep making Stross’ dreams come true. Soon we will need to do what all parents do – facilitate launching both of our sons into situations that will allow them to be as independent as possible, according to their respective abilities. Where Stross is concerned, that means expanding our team of respite nurses and supported community living supervisors to also include an organization with resources – personnel and medical – beyond what we can provide for him. And we will have to do it, because we cannot always be here to keep doing these things for him.

I am not sure if those of you who are reading this fully connect with what you have been experiencing. Lurking under all of the anxiety-ridden and problem-solving experiences, and even infused in the joyful and peace-filled moments of accomplishment, there is an undercurrent of mortality. Mark and I faced our deaths this week.

Who will do this for Stross when we are not here? Who will help make his dreams come true?

We don’t have answers to those questions yet. We have ideas. We have some contingency plans. But we don’t have sufficient answers to our life’s most important questions. I wonder if parents with children who have disabilities ever feel that they do. I also wonder if they too hope to outlive their child for their child’s sake.

We are not worried about Skye’s future.

We are deathly afraid about Stross’.

During the span of his two decades of life, we have lived conflicting dynamics. We know how much things cost, and we know the types of things insurers label over-and-above. We know what we want Stross to have according to our definition of quality of life. We know there are people who believe that if you cannot afford healthcare, you should figure out how to live without it – or not live, I guess. We also know there are people who fight extremely hard to fashion laws regarding situations they have never personally faced.

There were many who fought hard against the Americans with Disabilities Act (ADA) 20 years ago for economic and principled reasons, yet we cannot imagine what our son’s life would be like today without the provisions of that law, even as poorly enforced or followed as it sometimes is. Same for the door-opening education legislation passed in the 1970s known as the Individuals with Disabilities Education Act (IDEA) and others like it. People fought against those laws before they were enacted too – again for economic and principled reasons. And, again, I cannot imagine what Stross’ life would have been like without them.

Separate might seem easier for some who live in our shared society, but separate is not equal. And those who cannot navigate life normally need a way in.

Could Stross have gone to a camp for special needs kids this summer? Sure. Would it have been painful for us? Yes, but in fully different ways – and one very significant way: It would not have fulfilled his dream.

For now, for as long as we possibly are able, we can help do that for our son. We will stand by and with Stross for as long as he needs us, even after we launch him into a version of supported independence that we cannot fully fathom today. We will know when the time is right. We will know when the organization or system we’ve put in place is right. If we cannot determine that, we will not have done right by him.

I hope you have time to sit back and enjoy the 9:58 minutes of this Family Night video. Will you be able to see what happened this week through Stross’ eyes? I can, and I love the privilege of seeing life through him. I love how he continues to usher in moment after moment of involuntary joy. It’s a lot of pain. It’s a lot of work. But I cannot imagine what my life would be like today without him.

Thanks for traveling this journey with us.

Stross Goes to Scout Camp: Day 5 (in a series)

2010-07-29T13:38:00.002-05:00

Boy Scout Camp – Day #5
Evening, Thursday, July 22, 2010

Before I could even think about checking in with Mark and Stross (what did parents do before cell phones?), I got a text from Stross: I am coming home

Coming home? This warranted a call to Mark. Yes, they were coming home after breakfast. It had stormed all night and the weather forecast said it was going to rain all day. That doesn’t work well for transporting the wheelchair from place to place, even when covered with a tarp in the back of the Gator. Also, getting back into their tent, the place Mark had determined as the best location to manage Stross’ medical cares, was messy in those rainy conditions. So, they were coming home for the day and night.

The weather was a bit of bad timing, in a way, for Mark and Stross finally seemed to have hit their stride yesterday. They had found a pattern of being, a way of existing at camp that was working. Stross had even conquered making a camp gadget, a project that would help him earn his way toward some badge or level that he wanted to attain.

But now weather was bringing them home. Them and the camp gadget. (Yes, that is the gadget in the photos.)

This video shows what happened after they pulled into the drive almost exactly at noon today. God, I was happy to see them. I knew Mark needed a good night’s sleep – heck, a good afternoon’s sleep too. And I knew it would be good to hear, in Stross’ words, all that he had been doing. His enthusiasm would be the affirmation I needed, reassuring me that all of this has been worth it.

And, as you’ll see and hear from Stross, the week is not over simply because they have to spend a dry Thursday night in their comfortable beds. No, the plan is to get back to camp early tomorrow. He is not going to miss Friday – especially Family Night and all that means.

Stross Goes to Scout Camp: Day 4 (in a series)

2010-07-28T12:21:00.010-05:00

Boy Scout Camp – Day #4
10 p.m., Wednesday, July 21, 2010

The weather brought most of the state rain last night, so I began today checking in with Mark via text: Did you get sleep? His response: Yes, rain was quite soothing. I feel rested … a couple heavy moments, but nothing drastic.

I sure hope they are taking photos and remembering things to share when they get home. I haven’t really had time to learn details about all that Stross (with Mark) has been doing. I know he swam the perimeter of the pool; I know he earned his Totin’ Chip card granting him the right to carry and use wood tools; I know he has been learning to tie some knots; and I know he did something with a canoe, because when I texted Mark yesterday afternoon with a How r u today? I got back a one-word response: canoe. All those things sound so very Boy Scout; therefore, I am certain Stross is deliriously happy.

You see, Stross is a bit like Walter Mitty, the main character of a James Thurber story who escapes his dull-drum life by living amazing fantasies through his imagination. The difference with Stross is that he takes on a fantasy life that might be within his reach, if only. Or he lives in a fantasy life long enough to find parallels to his own. Fortunately for him, he experienced high school in the era of High School Musical. It is how he looked forward to and navigated things like prom. Then, whenever there actually was a musical being performed in high school, Stross tracked down a recording of whatever had been selected that year – Wizard of Oz, Oliver, Les Miserables, and Oklahoma – and then watched or listened to it over and over and over. By opening night, he knew nearly every lyric of every song and likely enjoyed performing on stage as a member of the chorus more than any other student in the cast.

Boy Scout Camp is proving to be no different. In the weeks – actually months – prior to camp, Stross began re-watching all the Disney movies about camp plus a few others. In fact, in the week just prior to camp, having exhausted all others, he watched Troop Beverly Hills (1989) starring Shelly Long multiple times. Somehow sensing that might not be regarded as something “cool” for a 19-year-old male to do, he watched it secretly using only his iPod. But I knew. And Mark knew. And Skye knew. We all know Stross pretty well.

I am thrilled that Stross is living his own cinema spectacular this week, but I wonder how close to his fantasy the week is turning out to be.

I am also grateful that this week has afforded me some Skye time. He has forever grown up in the muted darkness of Stross’ long and sometimes oppressive shadow. I could write a great deal about that. But not today.

Today, I’ll write that Skye and I walked downtown for a pancake breakfast at a local diner, something he usually does with Mark. And we truly enjoyed our time together. Makes me wish I hadn’t pulled away from our walk home to accomplish an errand. That side-trip resulted in an impromptu meeting. (Well, impromptu on my part. I am pretty sure the person who asked to talk with me had an agenda in mind.) That piece of spontaneity has pretty much ruined the balance of my day. Just when I was coming to a sense of peace about Scout camp, and just before Stross' call to tell me about the 5-mile hike he took today.

Me: “Wonderful, did you use the Gator or your wheelchair?”
Stross: “I walked.”
Me: Oh ... (thinking … “What?” … I’ll investigate that when he gets home.)

I would have loved to have fully enjoyed the call – to have listened longer to his news about smelling chocolate in the air of Waverly (courtesy of the Nestle/Carnation plant) and his plans for lunch at McDonalds (the reward at the end of his hike which, ironically, might be better for his diet than the lactose-laden fare of camp); for he sounded positively buoyant, even after expending 5-miles worth of energy on an early morning hike.

Unfortunately, his call came in the middle of that caught-me-by-surprise meeting. So I ended up apologizing, taking the call, and then answering, listening and experiencing the emotions of the moment in front of the other person. I had not wanted to taint the purity of the moments I would have with Stross on the phone, but I had not wanted to miss his call, either.

I guess it wasn’t all bad, for Stross’ joy – ever so briefly – offset the angst I was experiencing because of the meeting. The kind of angst that – if plotted on a pleasure continuum – would exist at the polar opposite of the pleasure I heard in Stross’ voice.

And you know what? Stross read my voice as well as I read his. For within minutes I got a text from Mark: Are u ok? Stross said you sounded like you might have been crying.

What an incredible son. What an incredible husband.

My text back: Long story. I’ll call soon to fill you in. Please don’t worry.

Mark might be experiencing a sense of peace today too; I don't want to be what ruins that even at a distance. But physical distance simply cannot dissolve emotional presence, can it? At least not during this week of Boy Scout Camp. At least not in our family.

Two short hours later our doorbell rang. It was a floral delivery person with a beautiful bouquet of yellow roses, burgundy mums, white Stargazer lilies, and some exotic green foliage I had never seen before. It seems there “ain’t no wilderness hike long enough, to keep them from getting to me, Babe!”

I am blessed, indeed.

Now, if the thunderstorms forecast for tonight would only dissipate – along with my lingering, frustrated anger leftover from that meeting today. But that’s not the way life works, is it? Storms thunder, rain pours, lightning strikes, and the best you hope for is a safe place to ride it out.

Just one more text to Mark before I go to bed: Don’t mess with lightning. Get to the van when u c or hear it.

Mark’s response: K, I love u.

I know.