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.

When Your Baby Has Birth Defects

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For 16 years I have been a guest speaker in the Human Growth & Development class at Waldorf College. Each year, the faculty member assigned to the course invites me to share what it is like to be the mother of a child born with physical and intellectual disabilities.

I always consider the invitation an honor, a privilege and a responsibility.

The class, which occurs every semester as part of the college's education curriculum, is largely comprised of men and women who want to be educators one day. Chances are great that they will encounter a student - an entire family even - whose life has been shaped, in part, by chronic disabilities. If I can, through the recounting of our family's story, introduce them to the emotional, spiritual, financial and physical ramifications of forever living through such a perfect personal storm, then they might be better able to connect with others in a meaningful, productive way.

My goal is to instill a measure of empathy and understanding that can help them meet the demands of their future jobs to the best of their abilities.

Stross accompanied me to the class the first time I spoke at the invitation of Prof. Marcia Trystad. He sat on the lecture table, happily playing with toys and delightfully distracting students with his infectious smile. He was oblivious to the words I shared and what they meant about our life together. Stross continued to accompany me to the class each semester for the next few years, playing off to the side of the room or sitting in the back with Mark.

Now he is taking college classes - one per semester - himself. And he continues to keep track of the days I go to speak to the class. With excitement and eagerness in his voice, he asks, "Are you going to talk about me again?" (For Stross, that is affirmation that he is famous.) "Are you gonna tell them everything?" His questions, and the joyful tone in which he asks them, serve as permission for me to vulnerably share details about his life - actually his and mine together - trusting the audience will respect what is shared.

To Stross, the details of his life make for wonderful storytelling. It is about him, after all. And life - his life - is all good stuff.

I love that about him; I treasure him.

I treasure the life - the story - our family has been given to share.

Involuntary Joy (book website)

This vlog is but a compilation of brief clips, letting you see what such a class period is like. A lot has stayed the same in the past 16 years, but each time is different. I continue to trust it is worth the hour or more of renewed pain that accompanies remembrance.

Please enjoy. Please appreciate. Please respect the story you hear.
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Note: I have spoken to many other audiences, tailoring the message for the audience's needs. The groups have been comprised of educators (of all variations), wellness students, education students, high school students, parents of children with disabilities, friends and family of parents of children with disabilities, church members, and caretakers of persons who have disabilities. I still want a chance to talk to medical professionals - doctors and nurses. They figure as such a dominant part of the stories that belong to persons with disabilities. I would be deeply honored to share what that has meant to us - the good, the not-so-good, the hopeful, the confusing. I'll let you know when that finally happens. I'm counting on the fact that - eventually - it will.
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"And I Learned Some New Things Too"

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On March 25, 2010, I was privileged to speak in Ms. Marian Greiman's Human Development class at Garner-Hayfield High School. My niece Jordan Blank helped host my time there, as it is a class she is taking. Jordan and I observe in our vlog (which she made before heading to track practice!) how it is possible to be related to someone and still not know things that are important to understanding the dynamics of that person's life.

The students were very attentive and asked thoughtful questions. I hope they now feel more comfortable learning about disabilities that shape the human condition. More than that, I hope they become more willing to meet and interact with people whose bodies happened to have formed differently than theirs.

Highlights of the day in quotes:

"And I learned some new things too."

"It seemed like everyone in class listened the whole time. You held their attention, even some that I know, for them, it isn't always easy to do."

"Thank you for saying what you did about not believing God did this to you. That has made all the difference to me. My brother has cancer, and I've been having a hard time. And you just helped me with that so much. I just want to thank you."

I hope to keep the dialogue going - to keep sharing about things that aren't always easy to talk about. Life gets exponentially easier when you realize you don't have to figure things out on your own.

Thank you, class. Thank you, Mrs. Greiman. Thank you, Jordan! (And, thank you, Krista, for your help too.)
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God Does Not Pinch

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Sometimes - more often than you would think - I encounter someone who shares a remark such as: "God sure knew what he was doing when he gave Stross to you and Mark." Or "I think God gave you Stross as a gift because he (Stross) can help you learn something about God."

I don't ascribe to the theology that shapes those statements - a belief that God causes babies to be born with birth defects, albeit, if only for a good reason.

I don't ascribe to the theology that shapes unspoken (but known to exist) thoughts either - a belief that God gave us Stross because of something we had done and that we needed to be taught a lesson. Stross, they assert, was to be our tutor.

Now here's what is most fascinating to me: Stross has been a wonderful life tutor - a definite gift from God. But I have never believed - nor can I imagine ever believing - that God knitted Stross together in my womb defectively. Not on purpose and certainly not accidentally. It simply happened, because that's the way things go sometimes in this imperfect world we live in.

Usually those who make the comments noted above are uncomfortable with my refusal to believe in a God who makes malformed babies. Even if for a reason. But I simply cannot believe in a God who "pinches." (That sentence won't make sense until you watch the video.)

In today's vlog I share a guilty story about something I did when I was probably 9 or 10 years old. What happened on the day I describe is likely the reason I never - not even for one second, honestly - have been mad at God about Stross. Oh, I get mad at the world and other people sometimes concerning circumstances related to Stross - but never mad at God about Stross' life condition or how it has shaped our future.

I wonder what you will think after you listen to the story.

I also wonder if the people who make the comments I shared above ever stop to think this: If they are right about God giving me Stross to teach me a lesson, he or she should really pay attention to what I have learned because of Stross, despite my protestations.

God has given me a lot to say.

Thanks for listening.




P.S. - I was sick last week: a monster cold. Feeling better now, thankfully!
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