Saturday, April 28, 2012

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.

Friday, April 13, 2012

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!

Wednesday, April 11, 2012

Amid the Easter Lilies

I greeted familiar faces when entering my hometown congregation with my parents, husband and children on Easter Sunday. Then I read familiar names on the listing of lily memorials. This year the display of lilies looked nearly identical to displays of Easters past; its accompanying list read like a roll call of those I remembered filling the sanctuary when I was a child, then youth, and finally, a young woman.

The list testified to my kindred status. Of the 32 memorials on the lily list, I knew 26 of the individuals who were being memorialized or the people who had given a lily in remembrance. I was in a place where I was known. The members of this congregation helped host my confirmation and marriage celebrations. In an authentic way, I am known by them as surely as those on the Easter lily memorial list are now fully known.

Flowers for the faithful. A great cloud of witnesses.

Beyond the floral tribute, the hymns that outlined my Easter Sunday service walked me through a faith life that has, at times, been buried and then raised again in a newer version of life.

“Christ the Lord is Risen Today,” surely this hymn is sung on Easter Sunday in every congregation that expresses belief in a crucified and risen savior called Jesus, the Christ. I cannot remember an Easter Sunday that did not have this hymn as part of its soundtrack. I cannot imagine an Easter Sunday without it.

“Lord of All Hopefulness,” a hymn that shares the same tune as “Be Thou My Vision.” The earliest “vision” version became my favorite hymn when I was just a girl of 12 or 13, brimming with self-assurance and aspirations yet old enough to recognize a need for divine focus. I understood I needed to temper my tendency for selfish ambition. Divine vision is what I longed for and is still what I need. As for the later “hopefulness” version, I discovered it while attending the Lutheran college that shaped my recognition of what it meant to live out a vocational calling. This version reassured me that divine vision was as close as the break of my day, the noon of my day, the eve of my day and even the end of my day. Best of all, hopefulness and joy go hand-in-hand in this version. Blessed assurance, indeed.

“Beautiful Savior” is the hymn lovingly recalled by alumni of the choir associated with the college that I have been affiliated with the majority of my adult life. Because it strikes such deep emotional chords with those who have shaped the institution, it now bears significance for me as well. It is a legacy hymn, sung by generations who continue to sing it with longing and love.

“He Lives.” I heard my father-in-law’s voice singing this hymn within seconds of its opening notes. Its bouncy melody calls for an echo, reminding me of visits to the congregation of my husband’s earlier years where men enjoyed providing the refrain in low, reverberating tones. The tune elicits memories for my husband that do not match my memories. We, as unique creations, entertain unique responses with a Creator to whom we are individually known.

The meaning of Easter is colored in hues that span the breadth and depth of life’s spectrum. This year I was reminded who I am and to whom I belong. I am different from the girl who first looked upon displays of Easter lilies, wondering. I now look upon them with wonder. I live an Easter life filled with hope and joy. That is my vision at the end of this day.