The Day Life Changed

Happy Birthday, Stross.
You have planned quite a celebration for the first day of your 21st year.
As promised, your life has been "a wild ride."
I look forward to the twists and turns yet to come.
These are the only words I have today. 
I love you so much it hurts.
Mom

Missing Me - May 4, 2011
Stross-Your Birthday is Nearly Here - April 30, 2010

Walk No More

About a month ago, I found this photo of Stross as it laid on a table covered by layers of photos at his high school. One of his former teachers, who had a penchant for capturing candid moments, took it in 2006. The moment it captured happened about one year before the teacher would learn he would die from a progressive degenerative neurological disease and about one year from us learning that the sight of Stross walking would exist only as a memory – or as an image on photo paper such as this one.

In late 2007, when a doctor advised Mark and me that it was no longer wise for Stross to walk, I cried. The doctor had delivered the news gently, and while he rightly understood we would not be surprised, he was also rightly aware that its significance was profound for us. Stross would no longer walk.

There was no need to clarify what the doctor had just shared. In fact, we had held nearly this same conversation a few times before, but on those occasions it seemed that Stross, or his body rather, had been able to keep going. Well, maybe Mark and I had wanted his body to keep going, and because we liked seeing Stross walk, Stross willed his body to do it for us.

But on this day we understood – as the doctor hoped we would – that this sight we loved to see could not happen anymore. We could no longer ask Stross to do what his body could not withstand. He was at a point of diminishing returns. If we insisted he keep trying to walk, he would be using all his physical, mental and emotional resources to break his body down rather than build it up.

The methodical four-point gait Stross learned in physical therapy made his muscles and joints do things they had arrived ill prepared to do. But it had been wonderous. Muscles and tendons capable of firing signals took over for ones that could not; malformed joints imitated well-formed ones; and underdeveloped bones bore his weight with the aid of braces capable of bearing the load. We had pushed past practical. Now, walking for Stross, while still possible, was no longer safe.

Stross would not walk again.

On the day Stross was born, we had been told he would never walk. Despite that, he had found a way to pull himself through space in an upright position. He had accomplished it with the aid of bracing devices and ambulation supports: first with a parapodium to learn what it felt like to bear weight and then with hip-knee-ankle orthotics and a reverse walker. The walker followed behind a three-year-old Stross as he pulled it or leaned against it when he tired of moving.

Once Stross began school, the forearm crutches were a challenge posed by a daring physical therapist. He believed they would boost Stross’ self-image. Mark and I had never worried about Stross’ sense of self, as his continuously smiley demeanor never left. Yet, the crutches elevated our sense of what Stross could achieve. Plus, they buoyed our spirits. The sight of him placing his bright blue crutches in a four-point gait always brought smiles – not just to Mark and me, but to anyone who happened to cross his path. Stross was our determined Mini-Us. He stood as tall as possible with those crutches, rhythmically bobbing his head in resolute willpower with each step.

Until the day of the news.

We understood from that day forward that Stross’ only means of ambulation would be a wheelchair. The pain of passing that milestone had taken my breath away and, along with it, any words to explain why I was crying. Eventually, I got this out: “I’m sorry I missed it.”

I had missed seeing the last time Stross would walk a hallway, my last opportunity to watch his awkward but grace-filled gait. Witnessing it helped me believe that impossible things were possible, but that testimony would not occur again. I had missed it.

I cried. I grieved.

Stross smiled. He was thrilled. He wanted to celebrate. There would be no more coaxing muscles into movements that resembled walking. No more physical therapy sessions designed to keep him bearing his weight as much as possible. We had always known those things would end. We had simply not known when.

We had missed it.

Stross: “I can go fast and do wheelies.”

Doctor: “Will you miss using your crutches, Stross?”

Stross: “No, you can throw them away.” (a smile)

Thrown away. I had thrown away opportunities to cherish things I now grieved. Today I can only close my eyes and try to remember. This photo helps some.

I saw a link on my Facebook wall tonight for a story titled: “Parents’ Bucket List for Dying Baby Girl Goes Viral.” It let me know that somewhere in Houston, a mom and dad are creating and celebrating milestones like crazy because their infant daughter has an incurable genetic disorder that will limit her life to 18 months.

They aren’t throwing away opportunities. They would give anything to have the life that I still – sometimes – grieve.

The mom and dad are keeping a blog written in their daughter Avery’s voice. In it, she describes her first kiss, courtesy of a 19-month-old boy named Cooper. The fact Avery will never walk – not even with braces and a walker or crutches – is not lost on me. Her parents have and will miss so many things that have been mine.

Painful. Poignant. Now I remember. This is the stuff of life.

His Hope Springs Eternal

Faithful readers know that one of my personal holy days is fast approaching: Stross’s birthday. As usual he began his countdown immediately after Easter. Actually, he began counting down the days to May 5 right after St. Patrick’s Day, but I told him I wasn’t ready to hear of it until after Easter. So, he counted quietly – but not privately – until this past week.

Part of Stross’s countdown ritual involves making a list of presents he would like to receive. Mr. Digital Savvy is a fierce online shopper who regularly sends me gift ideas. If the date on the calendar is between May 6 and December 24, the email subject line is about Christmas. If the date is between December 26 and May 4, the subject line is “My Birthday.”

Most interesting are the conversations about his plans for the big day. There is always a theme and always a need for pomp to go with his happy circumstance. When he turned 18, his special day was all about registering to vote and registering for the draft. This year he turns 21. You can imagine the plans he has in store. We have talked him down from a trip to Las Vegas. But I have a feeling if there isn’t at least one game of “21” happening for him sometime that day, he will feel cheated. Mark and I also know we will have to deal with that other rite of passage that so many 21-year-olds grab onto with fervor. My parents treated me to a classy dinner with cocktails. I hope something similar will suffice for him as well.

No one can grasp the magnitude of this annual celebration unless you spend time with Stross regularly. Birthday plans punctuate his daily life each Springtime with conversations sprouting like fragrant buds. This one happened this morning. I was driving him to an appointment, and he was seated in his spot in our van – middle seat, passenger side.

S: Hey, Mom, did you get the email I sent you today with the birthday gift I want?

J: Yes. I saw the link, but I did not open it. What is it?

S: A video set. "The Adventures of Sinbad."

J: You have already sent me a lot of links for gifts to buy, and you know that I have bought some already. How many gifts do you think you should get for your birthday?

S: 21.

J: Oh, really?

S: I will be 21, so ...

J: One for each year, huh?

S: Umhum. (His smile can be heard in his hum.)

J: (pause, then) So, will you get me 48 presents this year?

S: (pause) Oh, crap...

J: (smiles that her point was seemingly made)

S: (a bit longer pause than before, then a breathe of resolve) So, Momma, do you think we can try that sometime?

Ah, Stross. The wonder of him; the eternal hopefulness that eeks from every cell of his being.

He will not be getting 21 presents from us this year. But no matter how long his life, I am certain that he will continue to lobby for new ways to celebrate and new gifts that he “really needs. I do, Momma. Come on … ”

Oh, Stross. What will we do with you? What would we do without you? In all times, in all places, in all days, in all ways: Celebrate life!

Disillusioned

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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Missing Me

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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Annual Personal Performance Review

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.

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.

Birthday KISSes

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

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.

Stross Goes to Scout Camp: Day 3 (in a series)

Boy Scout Camp – Day #3
8 a.m., Tuesday, July 20, 2010
Staying awake until 2 a.m. sort of worked. The goal was to force myself to be so weary that I wouldn't worry anymore. Previous to Mark’s call last night, my mind was winding down from a day filled with homework for my masters level classes. My brain was weary. My body was tired. But after Mark’s call, everything in me began planning, organizing, looking for ways to help him out the best I could even from long distance.

Last night, I worked through my initial frustrations via a phone call to a good friend who knows how to listen. She doesn’t attempt to offer answers – or if she does, she apologizes with the disclaimer: “I know I don’t understand.” That is helpful. She also doesn’t get offended when I disagree with something she says about Stross or Mark. For example, when she tried to be encouraging – “You know that Stross is having the time of his life” – I felt comfortable suggesting an adjustment to her perception. It came by way of my response: “Without a doubt, but that doesn’t make it any easier on Mark. In fact, in many ways it makes it harder. That’s why Mark will stay there until the last medical supply is gone, the wheelchair is non-repairable, one of them becomes ill, or he simply cannot lift Stross any more.”

Damn it. That’s what makes Mark, Mark. That’s why Stross has room to dream. But why does it have to be so hard?

I know how it works. I know that Stross’ incessant, optimistic chatter about all things Boy Scouts will both grate on Mark and be the energy he needs to keep on going. It is a paradoxical existence that only those who dare to love Stross can understand. I’m not talking the casual “I love ice cream; I love Stross” kind of love. I’m talking full out agape, I’ll-go-wherever-Stross’-journey-is-heading kind of love. It isn’t for the weak of heart. And this week the journey goes straight through Boy Scout Camp.

Last night I also called my sister, Jill, to talk through plans for her to get me to family night on Friday. I can’t tell if it feels like it’s coming too soon or if it will never get here. For Mark’s sake, I’d love for family night to be tomorrow – tonight even. For my sake – selfishly – I’d love for it to linger in the distance. I need time to reconcile what is happening.

My intentionally timed conversation with Jill (i.e., calling while I was upset) was extra productive because her husband, Greg, is Stross’ Scoutmaster. It is why we decided it was worth it to drive him to another town for the meetings. We have a family member in the system who is able to help advocate too. Trouble is, sometimes we have a way of making things look so easy, that even family isn’t aware when accommodations are needed. So, I poured out my frustrations to Jill, who corresponded with Greg, who vowed to talk to Mark sometime this morning, and then help the camp’s directors better understand what might still need to be done.

Within an hour I got three texts back from her last night– each one providing a bit more breathing room. The first said Greg will address the shower issue today, the second offered the name of a friend who lived near the camp who could play courier should more medical supplies need to be delivered, and the third was an encouragement to:

Take a deep breath. Camp has a learning curve but Greg will help the process. Mark had told him of base [ostomy] issue, but not shower. Boy with CP may appreciate modified shower too.

You know, we get really tired of facilitating others’ learning curves. It has been two decades since I was one of the people who didn’t “get it.” I – Mark too – am getting weary of speaking up to help others understand what we need. It’s a delicate dance where you have to avoid resembling an overprotective parent or an angry, assertive advocate. That is not always easy through the pain.

But I shouldn’t complain too much. When we figured out the need for a Gator and how that would help Mark get Stross quickly around the huge camp while sparing his wheelchair from needless wear and tear, Scout Leader Dan volunteered to drive it over and back for us. He took time off from work to meet Mark at the rental place and fully took care of the Gator’s transportation for us. What a gift. The luxury of the Gator has been worth every dime of the more than $300 we spent. I can already tell that if camp becomes a regular occurrence, we just might need to make a Gator our second car.

There are more texts from Jill already this morning: one saying she reminded Greg to ask Mark if he needed him to run to town for Lactaid, one encouraging me to “hang in there and have faith,” and another stating: “Greg said Stross is having a great time & that other campers very accepting.”

Hmmm ... that last one is likely a matter of perspective that looks far different with a parent’s eyes.

I’m so conflicted about this week. Unlike Mark, I’m getting glimpses of what it’s like to not have Stross in the house. It is quiet. It is … open. My schedule isn’t dictated by the need to be near a bathroom that must be accessed at least every four hours.

But Mark is not getting that experience in negative portions. For all the freedom I’m feeling, he is experiencing two-fold oppression. He is Stross’ go-to guy 24-7 and in conditions that make grown men and women cringe and squirm simply from inconvenience. What Mark is doing to facilitate Stross’ participation means he must overcome inconvenience. It requires intentional ingenuity to overcome sometimes seemingly insurmountable situations. Like the time we – Mark and I – insisted on getting Stross down to a ruin at Mesa Verde National Park on his 13th birthday. Sure there were “accessible” ones on the surface of the mesa. But those aren’t the ones you see in photos. And we were on the vacation of a lifetime, courtesy of Mark’s mom and dad, so we needed the experience to be one that would last Stross’ lifetime.

We picked Spruce Tree House knowing there would be steps to navigate and paths that we technically weren’t advised to go on with a wheelchair because of the rate of incline and narrow passage. But we did it. And Stross got to see and be in a “real” Anasazi cliff dwelling. One that is actually in a cliff. And he had his photo taken with a Native American national park ranger (who was very surprised to see him there). And the ranger gave him a national park souvenir badge for his birthday, May 5th (a holy day for me). So, we did it. We made it happen for him – together: Mark, me, Skye, and even a grandpa and a grandma who likely thought we were crazy but quietly supported us anyway. And we all have wonderful memories because of it.

But Mark is alone with Stross at camp this week. There are others there. But no one who really knows or understands. And I feel so helpless. Very few understand like a parent does. Very few have the capacity to comprehend the selfless existence required. It’s an intense, angry, frustrated version of selflessness that informs you of how selfish you really are. But, damn it, you do it anyway because – in the end – you know that is what matters most. Your ability to facilitate your child’s happiness.


But it truly might be what kills you. Selflessness is stressful business.

That is why – even after keeping my mind busy until 2 a.m. last night – I cried after I crawled into bed. I thought I was done with tears, but I couldn’t stop thinking about Mark. In fact, as I type this in the first hours of a new day, I am crying again. God, I love him. I love them both. But I am loving Mark so much now that it hurts. It hurts to not be there to help be part of what might make things better.

He’s watching his son not be like the other boys.
He’s watching his son not understand like the other boys.
He’s watching the other boys stare at his Stross, perhaps even wondering why he came.
He’s realizing – again – how others cannot fully understand.
He’s feeling what it’s like when others are incapable of comprehending the magnitude of what must happen every single moment in order to make something close to “normal” happen for somebody else.

I know. I get it. But I am not there.

And I also know Mark doesn’t want to call and worry me. I know he wants me to enjoy my week of as-near-normalcy-as-possible. He would hate it that I stayed up until 2 a.m. last night and that I got up at 7:30 a.m. this morning just because I couldn’t make myself stay in bed any longer. I tried. But I kept thinking. So I decided to start typing instead.

I am looking forward to hearing how their day went today. Surely much, much better than yesterday. Greg will be talking to Mark. They will be problem-solving. The weather is fairly decent. Stross is getting to experience Scout camp. Surely the next time I hear from them I’ll learn about new knots tied or fires built or how the canoe trip they are to be on today went. All will be well. Yes?

Stay tuned . . . A Boy Scout special: "Helplessness"

I have decided the way I am going to deal with my feelings of helplessness - as they relate to Boy Scout Camp - is to write my way through it. That means next week you can choose to live my daily angst - if you want to.

In fact, I even have a preview for you - an excerpt of what is to come, if you will.

'... Mark will stay there until the last medical supply is gone, the wheelchair is non-repairable, one of them becomes ill, or he simply cannot lift Stross any more.'

Damn it. That’s what makes Mark, Mark. That’s why Stross has room to dream. But why does it have to be so hard?

I know how it works. I know that Stross’ incessant, optimistic chatter about all things Boy Scouts will both grate on Mark and be the energy he needs to keep on going. It’s a paradoxical existence that only those who dare to love Stross can understand. I’m not talking the casual “I love ice cream; I love Stross” kind of love. I’m talking full out agape, I’ll-go-wherever-Stross’-journey-is-heading kind of love. It isn’t for the weak of heart. And this week the journey goes straight through Boy Scout Camp.

Agh! It's one of those times again. Can you tell? A working in, through, out and over all things seemingly insurmountable. A spiritual shaping that requires blocking out those who don't get it while laser focusing on One who does. And the happiest kid (excuse me) - 19-year-old man - wearing a Boy Scout uniform is the most capable of leading the way.

So that is what I will be what I blogging about this week but posting next week if all goes as planned - or probably even if it doesn't.

Dear God ... maybe if Mark can get Stross through a week of camp, our family can get Stross to Europe one day.

Woah ... Where did that come from? That was wayyy to big to think about right now.

I've gotta go sing some Broadway tunes or something.

Wonderful Willow + Terrific Tree House = Fun for All

A sweeping, majestic willow tree has always been the focal point of our wonderfully welcoming backyard, even when our backyard wasn't as wonderful or welcoming.

When we moved into our current home, our oldest son, Stross, was two-years-old. I remember that our relator was pleased the previous owners had left behind a backyard swing set for him. However, I also remember wishing it away. The metal monstrosity painted a painful picture of what lay ahead for our family.

Stross, born without the capacity to walk, required parents who had the capacity to make life accessible for him. That included our backyard. Any childhood memories we hoped he would experience there were ours to create; any playful moments in our backyard had to accommodate him and his specific abilities. A standard issue swing set wasn't going to cut it. We needed a custom tree house - one with ramps that would allow him to go wherever his cousins, neighborhood friends and future sibling wanted to go.

But that would require planning and researching and saving money for materials. So, for the first few years, we simply took Stross outside with us to enjoy being in the shade of the beautiful willow tree. But two years later - after the arrival of twin cousins and a baby brother we named Skye - Mark and I felt pressure to start building the tree house of our dreams for him. Stross needed a backyard that he could enjoy in equal portions to other children - especially his baby brother.

When Mark began the actual construction, one goal rose above all others: The tree house had to be fully accessible, able to be used by both our sons equitably. That meant long switchback ramps that rose off to one side of the willow tree's impressive trunk. It also meant a deck area brimmed by built-in benches (with an opening for the tree's trunk) so Stross and friends could play on a wheel-friendly surface. And to reach the second story? An enclosed climbing tower built of recycled decking material that does not splinter, so that, after parking his wheelchair at the tower's base, Stross could crawl, level by level, to very the top.

To bring the dream to life, our sons' grandparents built alongside us - their mom and dad (mostly dad); and board by board, the tree house grew until our sons had a place to grow together.

Soon, more equally wonderful things occurred because of the tree house's welcoming presence. Our backyard became a place for our entire family to create memories - birthdays, barbecues and backyard chats. When Stross turned 7, the tree house became a pirate ship; when he was 8, it was a castle. Skye's tree house birthdays were magical as well, including one where his invited guests blasted off to space aboard a tree-tower rocket ship.

Scores of college-aged boys and girls have tree house memories too, because each fall, our backyard is the place where freshmen congregate for part of their college orientation. Those who have declared communication arts as a major gather under the willow to meet one another and to learn what is involved in studying communications at our local college. Then, each spring, those who are just about to graduate linger in her shade to share memories just before sharing good-byes.

Because she is such a welcoming place, the tree house hosts seniors from the nearby nursing center several times a year. They talk with each other and with students from the college's Wellness class, while enjoying refreshments. Then, one by one, each man or woman is assisted on a trip up the ramps in order to pretend to be the "captain of a ship" or "the pilot of a steamboat" once again - or to simply get a better view of some beautiful flower beds. Not every tree house can claim to have - in the words of one visitor's relatives - "given mom the last 'best day' at the end of her life."

Both our sons are young men now, but not too old to play night games with friends using the tree house as home base; and, not too old to help their parents host a picnic for new faculty or a farewell for friends. Our family still has decades of birthdays to celebrate; bunches of barbecues to enjoy; handfuls of first dates to experience; and hundreds of afternoons to sit in the tree house, under the willow's canopy, and simply "be."

A sweeping, majestic willow tree has always been the focal point of our wonderfully welcoming backyard. I'm counting on the fact that it will be for many years to come.

Our Day at the Mayo Clinic - Rochester

The medical profession has played a significant role in our son Stross' life since the moment his lungs first filled with air. Please understand that medical professionals may have assisted him in taking his first breath, but no more than they would have another newborn. No, their most diligent medical efforts for our otherwise healthy newborn-infant-child-now-a-young-man, have been related to his physical and intellectual condition.

His malformed body has been the reason our family has grown comfortably accustomed to the rhythm and reason of medical facilities. During the span of his 19 years, we've split our time between four major hospitals and become well acquainted with more than two dozen doctors. We've also shared hours upon hours of life with occupational and physical therapists. In addition to seemingly endless therapies, these years have also been marked by 14 surgeries and a hospitalization for an illness–rotavirus–that got out of hand.

But those facts aren't offered as complaints - only context. It's my way of attempting to explain how a place like the Mayo Clinic in Rochester, Minnesota, now feels like a former hometown we love to visit. Well, only if it's for a day of checkup appointments (a.k.a., the Spina Bifida Clinic Day).

Our family probably appreciates clinic days the way distant relatives appreciate family reunions. You get pre-visit anxiety, but mostly related to not fully knowing what to expect. And, you might enjoy a full day of really good news, or a day that goes down the dumper for a hidden reason that finally becomes known. There is only one way to find out, however: Show up and endure it all.

There is soooooo much more I could write about the way our family tackles a typical clinic day.

* How we strategically pack for a day that's mostly hurry-up-then-wait.
* How we understand to rush from one diagnostic test to the next so we won't get behind schedule the remainder of our day.
* How we individually entertain ourselves in our examination room "home base" while waiting for one doctor after another to stop by for a consult.
* How to create a new experience on our way to lunch or another building if we ever do get ahead of schedule.
* How we've learned to ask questions for which we might not like the answer.
* How coffee breaks and chocolate treats perk up the most tiring day.
* How budgeting a shopping stop on the way home is an important component to our personal wellness.
* How preparing for the possibility of tears makes them a bit more tolerable should they decide to well up and spill out.
* How time spent in an exam room or waiting room moves at half the speed of time spent eating lunch.
* How we feel connected to every person with whom we share an elevator ride - whether they are on their way to work or medical tests and consults of their own.

Our good news on this visit: Stross has graduated to annual visits across the board.

Our not-so-good news: Stross' body is no longer capable of safely bearing his weight when he pulls himself to stand. Where he once was capable of walking long hallways for large portions of time (using leg braces and arm crutches or a walker), he now should no longer attempt to stand.

Basically, we saw our son stand on his feet for the last time on this visit - if you could even call what he was doing on Monday "standing." I recognized the grief when it came. The same brand of tears I cried when we realized he should no longer use his crutches or walker to walk. My solace at that time was: At least he can still stand. Now that becomes a memory too. And you can see what it looks like as well, should you decide to join us on our clinic day via the vlog. I chose not to record my tears. Those are for my memories alone.

I hope you do watch these few clips from our day; I hope you enjoy seeing such a day through our eyes. If your family has someone that gives you a reason to be familiar with such experiences, I'd love hearing how your family tackles these days. We're all in it together, aren't we? And thankfully so.

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.

Brothers Bickering

It is typical for brothers to bicker. Tonight I reminded myself that the way the brothers in our home bicker isn't very typical. This is what I heard happening in our living area tonight while I was in the kitchen.

"Give me my wheelchair back."

"You don't need it right now."

"Yes, I do."

"Let me finish doing some donuts."

"Skye!!!! I have to change my bag." (ostomy pouch)

"So go do it then."

"I need my wheelchair."

"OK, but let me finish first."

"Skye ... you don't want me to change my bag?"

"Stross, you are just trying to get me out of your chair."

I finally interjected: "Skye, give your brother back his chair." And he did, no objections. In fact, he was already in the process of doing just that.

Here is what you can't discern from simply reading the dialogue.

• Stross thinks it is cool that he (Stross) can do wheelies in his wheelchair.
• Skye thinks so too.
• Skye likes to see what it feels like to be in a wheelchair every once in a while.
• Stross likes it that he (Skye) wants to feel what it is like too.
• Skye likes to do donuts in Stross' wheelchair.
• Stross wants to be the only one who does cool things in his wheelchair.
• Stross will invent medical needs to conveniently provide motivation for someone to react the way he wants - not often, but certainly when someone is infringing on his territory - really, his sense of self.
• Stross' wheelchair is to Stross as Skye's legs are to Skye.
• Stross understands that.
• Skye doesn't really understand it. Perhaps he can never fully understand. Perhaps I can't either.
• Stross likes it that he (Skye) tries to understand just a little, even if it is by having fun.
• I like it too.

I continue to love my sons so much that it hurts, and I am beyond grateful for the wonder of them - individually and as brothers.

Bicker away boys. As much as you want. I'll be so sad when those days are gone. The lump already forming in my throat lets me know that I'll have to become acquainted with a new kind of hurt.

I love you, Stross.

I love you, Skye.

I hope you always know that I love being your mom.

Serenaded with KISS

Tonight Mark and I were treated to Stross' rendition of "Beth," my favorite KISS song. His impromptu performance came after he emerged from our accessible bathroom with this announcement: "Hey, Mom and Dad. I am really good at this song. I'm going to sing it to you."

Wow! That has never happened before.

Don't be fooled by the photo - that was one of his high school speech performances. You see, he has spoken a solo before, but never sung one. Many times in 19 years, Stross has talked big about singing a solo, but we had yet to witness him taking the stage independently to perform a song. Tonight the stage was our living room, and the accompaniment came courtesy of his iPod.

Stross nerves (even alone with us) didn't allow for anything more than scant eye contact. And his wheelchair, and therefore his body, was positioned to face the wall more than us. However, for a reason known only to Stross, we had the privilege of hearing him sing in unison with Peter Criss to a rock 'n' roll classic. And, yes. He was really good at that song.

Please don't misunderstand. We have heard Stross sing aloud many, many times before. In fact, some of my earliest Stross memories are of him humming and singing along to songs shortly before his first birthday. Indeed, Stross still sings his way through each day.

He has simply never asked to command a solo performance - until tonight.

I have always loved how Stross' life has a soundtrack that aligns with the highlights of his life at the time. For instance, when we directed youth musicals at church, he constantly sang through the songs from the show. When his middle school or high school choir was getting ready for a concert, we knew the songs that would be performed, because Stross sang or hummed his favorites while going about the tasks of his day. And the years that he was in the high school musicals? Let's just say that our entire family had every melody of every song memorized in advance of opening night. To this day, when we see a movie, Stross spends the next weeks - even months - singing the biggest hits from what we saw on the big screen.

Evidently his optimal singing time occurs in our accessible bathroom when it is time for his cares (i.e., intermittent catherization and ostomy care at least every four hours, every day). It doesn't matter if Stross is alone or being assisted by one of us or a respite nurse, the first act of settling into his routine involves popping in a carefully chosen CD or nesting his carefully loaded iPod. Then he lets his Stross-version of the lyrics fly.

Through the years we've been the meaning in his life and his inspiration; carried on with wayward sons; bopped to the best of the Beach Boys; Mama Mia'd with Meryl and ABBA; hey-heyed with the Monkees; let it be with the Beatles; walked down streets with Dreamstreet; dreamed a dream with Les Miz; awakened to Spring Awakening; changed for good with Wicked; glissandoed with GLEE; whispered in the dark with Skillet; and so much more.

Truly, to be Stross is to be music.

So I wonder why tonight it also meant to perform it.

Perhaps we'll be serenaded more in the coming weeks and months. I hope so. His confidence is as charming as his life is heart-warming.

I guess, in many ways, his life is our soundtrack - Mark's and mine.

And tonight he got us ready for bed with his KISS.

Thank you, Stross. You are right. You are really good at that song.

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.

A Wonderful Time was Had by All

As you likely already know, May 5th is a family holiday in our household; this year was no exception. Our resident honoree–Stross Newcom–planned the day (which even began a day early), and then we all focused on what it meant to spend the day honoring him simply by joining in life as he lives it.

This year Mark's parents, David and Carolyn, included a stop for Stross' birthday on their spring travel itinerary, making his 19th birthday even more special for him.

It's always fascinating to view life from Stross' perspective. Well, as much as it is possible to do so. This year I witnessed how he wrestled with variables out of his control. He had planned his birthday down to the last detail, but he couldn't have foreseen this:

• Dropped messages. The emcee at Chanhassen Dinner Theatres evidently didn't get the message it was Stross' birthday, so Stross didn't get to hear his name announced at the beginning of the show - just as he has witnessed it happening so many times for others. And, yes, I made the arrangements when we bought the tickets and called to double check from the hotel, hours before the show. Something happened, and he was bummed.

• Unseasonable weather. He chose the Minnesota Zoo over other things on his list - indoor things like MagicQuest or Underwater Adventures at the Mall of America. He enjoys zoo animals; and therefore, the zoo is a magical (and thankfully a very accessible) place. So off we went into uncommonly cold spring temperatures: 40-degree weather! Stross was undaunted. The rest of us were grateful that large portions of the zoo are indoors or on display – in a comfortable way – outdoors.

• Uncooperative animals. Unlike in his memories of an earlier birthday spent at the Minnesota Zoo (2007), Stross' 2010 birthday had to occur without a dolphin show (as the volunteer explained it "two geriatric and one pregnant dolphin"). After I explained what "geriatric" meant, Stross faced the reality of fashioning a new memory (one that also had to have no bird show, either). He rose to the occasion showing the same amount of annoyance his mother might have. For all the genetic deviations that occurred as he formed in the womb, my ability to complain while pivoting into the future seems to have infused his DNA - at least I recognized and identified with his personal angst.

• Dizzying heights. Finally, Stross traded staying at the zoo until it closed for the prospect of seeing not just one but two IMAX movies. Unfortnately, the ample accessible seating area (with companion seats conveniently beside) were too close and messed with his non-binocular vision during the first movie: Under the Sea. (Stross can only see out of one eye at a time, so 3D up close makes him "dizzy.") Stross, undaunted, took Mark up on his suggestion to be carried up the stairs to sit by his brother and grandparents (and we would move with him) to view the second show about the Hubble telescope: Hubble. So during the second movie, we all sat as a family, Stross didn't feel dizzy, and he independently muscled his way across the row of seats and down the stairs when the show ended. Then, after a full day of navigating the Minnesota Zoo, Stross proved that he has what it takes to keep on keeping on. (Yes, you'll see some of what I'm talking about in the vlog.) What an incredible annual reminder of life's fragile tenacity. What a gift of life.

And, now for his birthday hangover: Stross spent part of today watching the four little movies of his celebration I made for him - still living in birthday magic – and waiting for the mail to arrive in case it brought some straggler birthday cards. (It didn't.) He remains undaunted, however. He is still wearing the bear claw necklace he bought yesterday, and he still has birthday money to spend.

I hope you enjoy the nearly 10 minutes of his nearly two-day celebration that is shared here. Mostly, I hope a little of his birthday magic transfers to you, because it is a powerful elixir.

Here's to the 2010 version of Stross' Birthday.
Here's to another wonderful year.

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.

Hunting for Eggs

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Stross made sure we hunted for eggs in my parents' yard this weekend. Kudos to Grandma Fran for her ability to kick into high gear and prepare for the hunt on short notice. Her grandbabies may be teenagers now, but they are not too old to enjoy the harried pace of the hunt.

Chocolate candies, jelly beans, coins.

Mostly pure fun.

And watching Stross navigate the yard while listening to his incessant, delightful chatter? Pure joy.

Involuntary joy.

May you be renewed in this season of renewal.

May you find joy in simple moments.
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