Day of First Awakening (aka, Loss of Naivete)

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.

• • •

Writer’s Malaise

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.

Holiday Hangovers

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).

She's Making It Through the Rain

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

One Foot, Two Foot - Heal

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.

Rhythm of Life

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.

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What do you hope for on this October day?


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Stross Goes to Scout Camp: The Complete Series

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)

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.


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Next: Stross Goes to Scout Camp: The Complete Series

Are you: "Focusing on What Matters"?

Our family's copy of the Spina Bifida Association of Iowa Summer Newsletter arrived today. I've been invited to be a guest columnist, and my first submission was printed in this issue (see below).

You may have come to my Injoy Blog because of the SBAA newsletter or found your way here through the website for my book, Involuntary Joy.

If you are coming to my blog for the first time, I realize you might be coming to see how similar our family's story is to yours. So you don't get too bogged down in my blog, let me point you to some specific entries - blogs with video logs (or vlogs)- that might resonate with you the most.

• A recount of our most recent Mayo Clinic day. Our Day at the Mayo Clinic - Rochester.

• An excerpt of a presentation that I make at educational training workshops and for future educators that attempts to explain how having a child with a disability creates a perfect storm for a family. When Your Baby Has Birth Defects. and Miss Blaser's Contemporary Issues Class.

• A recount of how I relive the day of Stross' birth every year. Stross Your Birthday is Nearly Here.

• A recount of how our family ran around Des Moines to fit in seeing two of Stross' doctors on a day with very sub-zero temperatures. A Day for Doctors.

Please let me know what you resonate with and what you might like to see discussed more. I believe our family and yours silently lives through much of life simply because it seems easier at the time (and maybe it really is easier). But sharing stories has benefits that cannot be denied: 1) We are reminded we are not alone, and 2) Others might obtain a glimmer of understanding for the first time.

If you are coming here because of the SBAA newsletter: Thank you and welcome. I hope you feel at home.

Joy

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Focusing on What Matters
published in Summer Newsletter, SBAA of Iowa

My oldest son, Stross, was born on May 5, 1991, arriving with spina bifida, hydrocephalus and a host of other congenital anomalies. He ushered my husband and I into an existence that has us unable to fully remember what life was like before his birth. And, truly, I wouldn’t have it any other way. Neither would Mark. (I asked him.)

Now, I am not about to wax poetic regarding the blessing it is to raise a child whose life is shaped, if not defined, by major birth defects. That doesn’t mean I don’t regard his life – and therefore mine – as blessed. It simply means I believe any notion of a blessing is lessened if I don’t regard my life’s dark moments with equal respect. After all, dark moments frame life’s lighter ones, coaxing me to focus on what matters most.

I’m resisting the temptation to tell you what I think that is, for I recognize that each family is charged with the task of determining what matters most at any given time. As parents, guardians or family members of someone born with spina bifida, I believe you know what I mean.

- Is owning a vehicle that can’t accommodate your child worth the luxury of keeping it?
- Is fighting for the right to sleep by your child’s hospital bed worth the confrontation you know you might encounter?
- Is time spent examining an EOB (explanation of benefits) worth the savings you might discover because of a misassigned charge?
- Is the opportunity for a night out worth the hassle of arranging respite?
- Is your child’s right to be taught in a class with his or her peers worth the meetings and tense conversations it might take to make that happen?
- Is the chance for continence worth the price – not literally but figuratively – of bladder augmentation?
- Is not making a career change worth the health insurance your family enjoys?
- Is explaining your child’s disability to a curious stranger worth the potentially pitiful reaction you might get in return?
- Is ignoring your marriage worth the effort it will take to either try to make it better or allow it to fall apart?

Sadly, this list only represents a small portion of the ongoing challenges regularly faced by families of children with disabilities. I can only guess that, as with my husband and me, your life has swirled at various velocities since your child’s birth, picking up speed or calming in response to the issues that regularly come your way. And, as with a perfect storm, there is a calm center. I regard the center of our family’s storms as the place where Stross resides, oblivious to all that is clamoring around him – at least most of the time. For his sake, I hope that always remains true.

What about you? Do you identify with the tumultuous and yet peace-filled moments that shape the lives of those who love someone born with spina bifida? That has been my existence for 19 years, and now I am one of the “old moms” on the block. That fact fascinates me, for I feel I still have so much to learn.

Stross still lives in our home with his younger brother, Skye, and likely will for a while – but not forever. He has had 14 surgeries in life and likely will have a few more – but not for a while. He is living a full life with opportunities to continue learning skills that will further enhance his quality of life – but not without a lot of extra work on our end.

I look forward to sharing life with you through this column or through my blog. Perhaps your journey is just starting out, or maybe you have lived experiences I’ve yet to face. I would love to hear what you have learned because of your son or daughter. Medical procedures, insurance battles, self-care advice, vacation tips, family encounters – you name it. Dark moments or light: There is joy in the midst of it all. Let’s plan on finding it together.

My Independence Day Parade

Sometimes I feel myself holding back, wondering if what I want to share in my blog will offend someone. That's not a bad thing by any means. But it messes with my impulse for authenticity and my drive for healthy honesty.

As a person who lives very much "out there" (Hello? Have you read Involuntary Joy or some of my blogs?), imagine my surprise at feeling hesitant about sharing how I celebrated the anniversary of our nation's independence. Why would I, the daughter of history teachers who included me in assisting with political campaigns as a child (in fact, my father is even a former Republican candidate for state office), hesitate to share that?

What has become of me? Has our current political climate affected my sensibilities?

I sure hope not. That's why I've determined to hesitate no more. I'm telling what I did to celebrate Independence Day, by golly. You ready?

I marched in an Independence Day parade in Clear Lake, Iowa, on behalf of a candidate that I hope gets to stay in office (that's me with Iowa Governor Chet Culver) and on behalf of another candidate I hope gets to oust an incumbent from office (that's me with Senate candidate Roxanne Conlin, former assistant attorney general for the state of Iowa). And, Sharon Steckman, I'd sure vote to keep you in office if I lived in your district!

I participated politely and respectfully, proud to be part of a country that - for 234 years - has adeptly navigated political changes in leadership by engaging regular citizens in the process.

If you think I hesitated because I didn't want to offend my parents, think again. They might have marched alongside me if we still lived in the same part of the state. The birth of Mark's and my oldest son had many in our family - beginning with us - rethinking our concept of political systems and the way government influences social structures. But that's a topic for a fully different blog. This one is about me exercising my freedom on Independence Day (well, technically, the day after). It's about me, being me.

I walked a parade route and saw people lining the streets in celebration of their country's freedoms. I watched political candidates waving, greeting, and connecting as best they could, and I saw people choosing to respond or not to.

Most people were polite and respectful. Some (very few) were not. But, if citizens choose not to get involved or if they choose to participate in a manner that is not polite and respectful, we might not like it, but that is a celebration of our freedoms as well, isn't it?

That doesn't describe what I did or how I did it, though. So why did I hesitate to post this?

I hope you watch the vlog and see what I saw. I hope you spend a few minutes walking along with me. We live in a beautiful country. Incredibly beautiful. Comprised of citizens of every make and manner. I'm glad anyone chooses to sacrifice his or her own time and personal dreams to navigate the political system into office. It's not an easy path. And I hope the only ones who choose to navigate such a path do so for all the best reasons: to serve the citizens of the city, county, state or country they love.

It's my Iowa. It's my America. How beautiful.

How Does Your Garden Grow?

Those of you who have read Involuntary Joy might understand how my husband's place of employment (which has also been, at times, mine as well) has shaped our lives in the same way a person would. Our arrival on campus – almost exactly 17 years ago – felt a bit like coming home. The "call" to kinship with her DNA was undeniable. And so, we uprooted our lives, trading old dreams for new ones in order to share a future that we believed was full of promise.

Before I write much more, I feel the need to share this: Waldorf College is one of the easiest and, paradoxically, most difficult topics for me to write about. When I've had the opportunity to write copy for marketing or public relations pieces, the words flow easily, for I know Waldorf intimately and honor the wonder of her, cherishing the personal transformations that have occurred on her campus since her beginnings in 1903.

This is not that kind of piece; therefore, my task is exponentially more difficult–as difficult as writing about a family member and wanting it to be "just right." Doubting that is possible, I'll forge ahead anyway.

As the fruit of Lutheran education (Go, Wartburg Knights!), I have lived my adult life in kinship with all sister institutions as if they were members of the family. Because I grew up United Methodist, I never really thought much about my spiritual heritage (I was baptized Lutheran) until I was courted by the admissions staff at Wartburg College. And then, thanks to encouragement from then President Robert Vogel, I soon forsake scholarship packages from other institutions for the chance to become a Wartburg Knight – a decision that had my Lutheran godmother, Aunt Lois, rejoicing. Once transplanted on the Wartburg campus, it was as if a seed had found the soil it needed to grow deep roots and flourish.

You see, I know what it means to "Be Orange." But I also know what it means to "Live Purple."

Waldorf College ... what am I to do with you? You helped bring some of my husband's vocational dreams to life and coaxed me into the classroom. You didn't seem aware that I'd vowed to not follow in my educator parents' footsteps. And, yet, I became an educator in spite of myself – all because you needed someone to teach the knowledge and skills I enjoyed using while employed in a career I loved.

So, year after year, as young men and women found their way to campus to discover their individual callings, my roots stayed watered and even deepened. I felt myself growing with Mark and, in turn, both of us felt strengthened by colleagues who shared a vision for educating "the whole person" in an atmosphere where faith and reason divinely mingled.  

In recent years, the people who are Waldorf College have experienced personal pruning and even transplanting – each event as difficult as the circumstances that are represented by the change. For instance, this summer our family will say good-bye to friends who have lived in this community for 26 years – nine years longer than we have. They came as a couple and have raised four children here. We have been in a Bible study with them for more than a decade and have celebrated our children's confirmations, graduations, and various school accomplishments. We have grieved together. We have been frustrated at life together. We have been awed by life together. Now they are moving on - transplanting their lives to a place where they can continue to be nourished and grow.

It's not as if we have never seen people come and go from this fascinating place. We have. In fact, when we arrived 17 summers ago, we were taken under wing by several elderly couples who had recently retired from Waldorf. The kind of emerita and emeritus (now no longer living) whose names and spirits are infused in the hearts of thousands of alumni. They saw Waldorf through some of her darkest days and believed we had come to help her transition into an expression that would help her withstand unforeseen days to come (i.e., changing from a junior college into a baccalaureate institution).

Their tutelage testified to us in recent years when we needed it most - when our roots felt exposed, and we wondered what remained for us in this place they had built with love. As the ground shifted under us, we wondered: How deep do our roots go? How much nourishment do we require? Are we healthy enough to withstand inclement times? I even found myself wondering if I was more like a hosta or a rose – or if it even mattered.

I still don't really know.

Whenever Mark and I hear of another friend who has decided to uproot – to transplant their life in a place with soil that promises rich nourishment – we look for the sun and stretch to search for water. Are we still able to flourish where we are planted, or are we in denial about the condition of our garden?

This past week we got some unsolicited nourishment from two former students - Melanie Lane, class of '07, (the first vlog) and Justin Hawley, class of '99 (the second vlog). We had a chance encounter with Melanie, who works at Mayo Clinic, in the Rochester subway, just outside our favorite lunch spot. She joined us for lunch, bringing stories and memories full of life and light and love. And when she spontaneously thanked us and shared what we have meant in her life, I cried. I didn't know how much I needed to hear what she said.

Obviously, I didn't ask her repeat what she said for my vlog and I won't type her kind words verbatim here (even I am not that tacky), but I did ask her to repeat a story she shared about her volleyball coaching experience. Waldorf communication alums, you'll see why.



When we got back to Stross' clinic exam room, I posted on Facebook that we had run into Melanie during lunch. That generated a posting with an offer to share dinner from Justin Hawley, another communications alum who has transplanted to Rochester, Minn., where he is flourishing. And, fortunately, we were able to – almost as spontaneously – make that reunion happen as well. Then, during dinner he, too, volunteered extremely kind words about Mark and I in an expression of affirming gratitude.

I've spent a lot of time tending to my garden this week - figuratively, of course. Perhaps Mark has too. We both seem to need reassurance that our lives are still in a place where we can - not just grow - but flourish.

Hey, Waldorf College Communications alumni. If we haven't told you lately, please know that we love you. Your lives continue to nourish ours. We are grateful. Many blessings to you - each and every one.

Stross was Born to Ride

Written Sunday, June 6, 2010, 11 p.m.
Monday will be a full day of appointments at the Mayo Clinic – beginning at 7:30 a.m. and ending when our 4 p.m. consult ends. Because it makes Stross’ no-food-or-drink-after-midnight easier, we typically head to the Med City on Sunday night (like tonight) to spend the evening at our favorite home-away-from-home hotel.

We do this whenever Stross' Mayo schedule calls for an early start to an incredibly full day. It gives us time for a preparatory evening of pizza, swimming (sometimes) and a good night's sleep.

This time we had a surprise for Stross upon our arrival. We had arranged for a visit from Heather with Bikes for Everybody. In fact when we pulled into the parking lot, she had already arrived from Red Wing with a hand-pedal bike for Stross to try. The vlog is really the best way for you to find out what happened next.

Some context might be helpful for you, however. For instance, you might appreciate knowing that we attempted to get a bike for Stross more than a decade ago. It matched his abilities at the time and was among the latest technologies at the time, but it required too much energy and coordination to be fun. For Stross, that bike felt more like physical therapy than recreation. We didn't know that on the day he got it, though. I clearly remember and cherish the memories of the day it arrived. His blue bike had him beaming. He felt just like one of the neighborhood kids and, equipped with a set of wheels to call his own, he tried his darndest to keep up with them.

I don't remember when the fun became work. I only remember that the blue bike's days faded with Stross' interest in keeping up with the neighborhood kids. Sometimes fun isn't worth it. Fun has to be fun.

Today was fully different. Stross is a young man now. And while he’s lost more of his already lacking physical abilities in his lower extremities, he’s more than made up for the reduced lower body mobility with his upper body. A hand-pedaled bike is just what his body likes, and exactly what he needs. This bike promises grownup-type pleasure rides, exercise and even independence. And the time he spent in the hotel's parking lot with the demo not only looked fun, it felt fun. As with the blue bike years ago, seeing Stross ride the hand-pedal bike brought his dad and I one of those elusive moments of involuntary joy.

Our oldest son rode a bike today. He rode one independently of us and looked extremely grown up as he rode it. So we'll figure out a way to buy him a bike just like this one - only in emerald green with a black seat (Stross' choice). And we'll probably smile every time he rides it, because he'll be smiling. After all he was born ready to embrace moments such as these, and many, many more.

Our Man in Uniform

Our family's oldest young man is now a man in uniform. Stross, at 19 years of age, was inducted into the Boy Scouts of America (BSA) tonight. His life, the BSA's vision, our mission as Stross' parents - it all basically came together tonight when our oldest son ceremoniously claimed a status he's sought more than half his life. He is a Boy Scout. He is a man in uniform.

Amazingly, these two seemingly polar existences merge to reflect Stross' life circumstances. Due to the circumstances of his birth, our man of 19 lives with an intellectual outlook of one entering the scouting system in his boyhood years, yet his dream - since his actual boyhood - has been to serve his country as a man in uniform. That dream became possible tonight thanks to the Boy Scouts of America, and Stross' inherent persistence.

Stross - despite our assertions that he was too old to join the scouting program - independently searched the Internet to learn this: A Scout or Venturer with a disability may work toward rank advancement after he is 18 years of age. See also: Boy Scout Policy on Advancement for Members with Special Needs

This was incredible news for Stross (and us); for when he was in elementary school and first heard about the Boy Scouts, Mark and I couldn't bring ourselves to figure out how to make his desire a reality. There was just too much other stuff: two times per week therapy sessions, daily at-home therapies, daily homework, six times per day medical cares, church activities, family gatherings where we needed to think through accommodations, and his younger brother, Skye, who needed his own undivided attention as well.

Stross wanted to become a Scout way back then, but we deferred. We knew it wouldn't be as simple as signing him up and regularly getting him to the meetings. We knew that a lot of the accommodating and facilitating would need to come from us, for it is simply too hard for others to get their brains around what must happen for inclusion to help someone truly feel included - sometimes they never can. And if it doesn't happen, the pain from renewed grief is daunting.

You just never know what to expect. While a negative experience would have been unlikely in our friendly hometown, had we attempted an earlier entry into scouting, the outcome could just have easily been something like this: News Story: Scout with Disabilities Told to Get Lost and then also Blog: Cub Scouts tell Mother her Son is No Longer Welcome In fact, that could have been the reaction when Stross brought this dream up again shortly before his 19th birthday.

Fortunately, scouting runs in my genetic pool. I have Eagle Scouts as an uncle, cousins, cousin's children, a brother-in-law and - soon - a nephew. And, certainly, that much Eagle Scout initiative can come in handy at times like this.

A sincere thank you to Scoutmaster Greg Blank (Stross' uncle) for helping our son's dream finally become a reality (and for fielding dozens, maybe more than a hundred, text messages from an eager Scout-to-be).

Stross was radiant tonight. He wants to wear his uniform every day. He wants to become an Eagle Scout, too. It may take some time, but I believe he will. Mr. Persistent has his eye on that new dream, and I can hardly wait for it to come true.

I hope you can sense Stross' feelings of fulfillment in this vlog. I hope you feel - once again - his involuntary joy at the magnificence of life. You are destined to soar, Stross. I promise we will be here to keep your wings from touching the ground.

Congratulations, Kiddo! We love you.

Mark's Birthday Through Stross' Eyes

Only nine days after his own birthday, Stross gets to celebrate a birthday again: Mark's. One of the inherent joys of belonging to Stross' family is getting to see life through Stross' eyes.

Yes, I used the term "Stross' family," for our separate lives have been pulled into orbits that each encircle his. Our family belongs to Stross. He claimed our lives – Mark's and mine – on the day of his birth. Skye didn't have a chance. He's belonged to his older brother since the day he arrived.

The four of us live symbiotically – some days, co-dependently. (We try to avoid those.) But by chance and by choice, our daily moments are interdependent; therefore, on days of celebration, Stross' palpable joy is ours.

I hope that - when you watch the vlog of Mark's birthday celebration - you are able to live a bit of the wonder we enjoy every day. It's the paradox of a younger brother teaching his older brother; a child leading his parents. An incredible young man living every moment to capacity and providing us moments of involuntary joy.

Stross - Your Birthday is Nearly Here!

Stross is my oldest son, and each year his birthday calls me to a time of remembrance, reconciliation, and renewal.

In 2008 I wrote an article for The Lutheran magazine about Stross' birthday and how I regard May 5 as a personal holy day. Also, in the preface to Involuntary Joy, I describe something divinely dynamic that happened to me on Stross' 5th birthday (yes, his golden birthday). I wrote how, on that day, I caught an unvarnished look at the reality of Stross' life - through his eyes - and realized that I wanted to be like him when I grew up.

Both the article and the book's preface were attempts to explain how Stross' life has changed mine forever.

I continue to make such attempts – like this vlog, for instance.

I want to share how, as the fifth day of May approaches each year, Stross' excitement over birthday preparations becomes palpable. I want you to know that birthday planning is practically a full-bodied experience for him, with every pore of his body oozing energy whenever he announces how many days remain until the calendar shows May 5.

I am not sure you can understand how our family relies on his constancy as much as we do the changing of the seasons – walking with him through exciting days of anticipation much like an advent calendar with substantially more days. For instance, we know that Stross will begin to talk about his birthday soon after the new year. We might be able to collectively hold him off from full planning mode until after Valentines' Day - maybe St. Patrick's Day - but once there are no commercial holidays on his radar, Stross locks on a May 5 target.

The full month of April is dedicated to plotting (what gifts to ask for), planning (where to spend the day), and even preening (what to wear).

Stross insists on appropriate birthday attire, so "preen" is definitely the word of choice. When choosing what to wear for his birthday, he sometimes tries things on to be sure they are birthday appropriate. In the past two years, the primary criteria has been his ability to wear a shirt with a number that corresponds to his age. In 2009, I was grateful to Peyton Manning for wearing jersey #18. This year I am thankful to the Garner Boy Scouts for being Troop #19. Also, because Stross will soon be joining that troop, this year's choice of attire is especially fortunate.

On every May 5 since 1991, I have privately spent part of "Stross' special day" evaluating my life and how I have been changed by motherhood. Stross' fifth birthday made that process even more intentional.

Motherhood: I may spend the full measure of my life attempting to explain what that means for me; and, how I define motherhood will forever be connected to how I define my relationship with Stross. I do not negate the reality of my separate relationship with Skye, my other, equally remarkable son. But long ago I understood that my maternal sensitivities had been shaped by Stross in ways that lie outside my human comprehension. For Skye, that means he has a much different kind of mom than what he might have had should his older brother arrived without complications.

I recognize the futility of attempts to explain things I cannot know because they never came to pass. Still, I feel compelled to try; every May 5 I feel pulled to the possibility of it. If only you could feel what courses through me. If only you could comprehend the fullness of it. I watched the vlog of me reading from Stross' baby book and desperately want to try to describe what makes me cry as I read.

I am not sad.
I am not disappointed.
I am not overwhelmed.
I am not defeated.
I am grateful.
I am in awe.
I am remembering.
I am renewed.
I am ... ah, yes ... I Am.

Despite all the words I typed above, I remain at a loss for words. That's probably why I chose to read you the story as I recorded it in Stross' baby book – a bizarre mixture of words too big for him to understand and a childlike recounting of things I want him to understand. As you listen, feel what you might then let me know what you felt.

Maybe what you feel will come close to communicating what I want you to know.

Amen. May it indeed be so.

Miss Blaser's Contemporary Issues Class

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Not long after Involuntary Joy was published, a former student of mine named Tali Salberg Paulson read the book while pregnant with her first child. (Here is a vlog with Tali when pregnant with Baby #2.) She shared her reactions along with a hope: "I wish your book were required reading for young women before they get married and begin having children."

I had not anticipated her statement, for young women were not necessarily an audience I had in mind when writing Involuntary Joy. (Then again, I'm not exactly sure who I had in mind. I just knew was compelled to write it.)

As Tali continued to share her reaction and reasoning, her wish made a lot of sense. So much of the time we live re-actively, postponing any thoughts of how we would deal with less-than-ideal circumstances until our life circumstances prove less than ideal. I sensed that Tali, who as I stated was pregnant with her first child, was quickly processing some things she had not thought of before. In fact, she confessed goading her husband, Chad, into some what-if conversations. The poor guy probably thought: "Where the heck is all this coming from?"

Anyway, I immediately thought of Tali and her wish when I got a call from someone (thank you, Mr. Kofron) informing me that Miss Blaser was having a difficult time locating books to purchase for her class. Within an hour, I had passed books along to Miss Blaser via Mr. Kofron's bus route, and later that week, her Contemporary Issues students (hello, Gretchen Thomas and Jamie Hoff) were reading Involuntary Joy.

After the all-school assembly last week, I enjoyed hearing about their collective reading experience – primarily about the kind of topics they discussed because of what they read. And, Tali, I think your wish came true for the women in this class. I think they have vicariously lived some things that are getting them ready for whatever is to come in their own lives regarding marriage and motherhood.

Fortunately, odds are in their favor. Most likely they will not experience anything close to what life has presented us. But if they do, I think that they, somehow, feel better prepared – at least more aware, and that can be a wonderful proxy for preparation.

So, thank you again, Miss Blaser, Gretchen and Jamie. I am honored to have been even a small part of your learning experience. I promise to write more someday about the questions you asked during the vlog about coping abilities and the decision to describe situations with family members in the book. Wonderful questions. I think they deserve even more reflection ... someday.

"Hey, Can We Talk?" Thanks, WCLT, for Doing Just That

On Thursday, April 22, I was the featured speaker at an all-school assembly for WCLT High School (Woden-Crystal Lake-Titonka). The invitation came after several factors fell into alignment:

1) Students from W-CL-T heard me speak about writing Involuntary Joy during a presentation in an English class at Waldorf College.

2) The students were also taking Miss Sara Blaser's Contemporary Issues class at WCLT High School. When Miss Blaser allowed the class to choose a book to read for discussion, they asked for permission to read Involuntary Joy.

3) The class read the book and used its content for discussions about parenting, motherhood, birth defects, raising children with disabilities, working mothers, and more.

4) Meanwhile, Lisa Pleggenkuhle Grummer, who attended the same high school I did, was regularly substituting at WCLT. She read Involuntary Joy at about the same time as the class, and she invited me to lunch in her home for our own time of sharing. In fact, you may have met her in a previous blog.

5) Lisa suggested that Miss Blaser invite me to come speak to WCLT's Contemporary Issues class or even to students in the Biology and Anatomy classes. Lisa even wondered about the possibility of having an all-school assembly.

6) Principal Ken Kasper and Miss Blaser agreed that there were a lot of topics addressed in the book that could be enlightening for all the students, and so, I accepted their kind invitation to present an all-school assembly.

Today's vlog features outtakes from our time together. This high school (approximately 80 students) is a wonderful piece of living Iowa history, for school consolidations will soon end the days of graduating classes numbering less than 100. In fact, the school boards of Woden-Crystal Lake and Titonka recently voted to explore whole grade sharing with neighboring districts, and in coming years, students will no longer fill the halls of this current facility.

I felt honored to be standing in the WCLT gymnasium on Thursday (brightly decorated for prom) and talking to a group of young men and women who know full well that much of life is about adapting to change. Like our family, they have learned that you simply take what life hands you and keep moving forward.

To a student, each young man or young woman was courteous and attentive as I shared our family's story - my story. Clearly, each one–on either an academic or intensely personal level–understood that preparing for adulthood means anticipating unforeseen circumstances, whether fortunate or unfortunate, but not allowing them to make you afraid. Heck, many who stayed after to talk to me personally let me know that their lives have already been filled with challenges met or in the process of being met. And they are doing a great job of growing up to be exactly who they are meant to be.

I recognize it has become cliche' to say that children are our future. But, truly, I trust the young men and young women that I spoke to on Thursday to create a new way of living in our world. It is why I was comfortable sharing intensely personal stories. Perhaps hearing a bit of our family's experiences can better prepare them for whatever else life brings their way. Part of my hope is that they become more comfortable with a world where "normal" is defined broadly enough to include all the abnormal situations encountered by families living with and caring for persons whose lives fall outside of "the norm" - whatever that is.

And, yes, Gretchen, Jamie and Miss Blaser. I will still post the vlog we made about Contemporary Issues class. What a wonderful conversation! Thanks for making this all happen.