Monthly Archives: September 2016

Champion On, Will….Champion on, Mom

After 37 surgeries and procedures in 13 short years, and three very complex and life threatening hip and femur surgeries in the last three years, my son champions on.

My husband and I are short, dark, stocky, generally cynical folks who choose to see the glass as half empty, yet we gave birth to this tall, blond, skinny, sunshiny optimist.

His disability triumphs over the psychology argument of nature versus nature. His cerebral palsy keeps him skinny, and his intellectual and social inequities keep him from absorbing and adopting the environment of pessimism that Jim and I often exude.

When Will was born, they predicted his death and then he outlived those 2 weeks and then those weeks turned into months and now have turned into years.   There was even a limit given to those years after he had lived for years, but he surpassed that mark as well with what I like to think of as a “fuck you” to his doctors.

He continues to both befuddle and amaze his doctors. At any one of Will’s 10 pediatric specialists, we hear the same line put to the tune of a different specialty remix, “We have never seen someone with that bad of a Pectus chest deformity and shallow breath have as good of respiratory health as he has” or “We have never seen anyone with so much brain damage never have a seizure.”

Every week, Will faces multiple clinical physical therapies and physical, occupational, and communication therapy sessions at school as well as at least one doctor’s appointment, often two. There is always picking, poking, and prodding, and often painful sticks involved. Yet, he doesn’t cry. He doesn’t fight. He complies. Not always willingly. But he eventually knows it’s just part of the routine and the quicker we do it, the sooner it will be over.

Incredibly mature for a 13-year-old boy and in particular for a boy who is also on the autism spectrum. Periodically, a nurse or someone at the school will note with concern that Will isn’t patient enough. Not patient? Every hour, he spends 10-20 minutes of that hour being fed through a g-tube and 5 having his diaper changed because he is incontinent. And then spends hours a week with those in the therapy or medical community. You go through that and then we can talk about patience.

These last two years of complex bone surgeries have made recovery and rehab very hard on him and on me. Will used to be able to walk with a gait trainer, and he could crawl, and roll over, and sit up. He went from not being able to even hold his head up as an infant to be able to do all of these things by age 6 and then he went backwards.

His body grew, his muscles tightened, his neurological wind swept legs pulled his hip out of socket. First he lost his ability to gait, and then sit, and then crawl, and then finally roll. He can only lay or sit in a wheelchair or specialized chair that supports him. He can’t get to what he wants, he can’t leave, or even come to me voluntarily unless he is moved or he is in his wheelchair where he can move his wheels. His body now requires another body or piece of equipment to move him. I can’t fathom how incredibly frustrating and heartbreaking and confusing that is for him. He sometimes still tries to roll over, and he just can’t get his body to move and the look on his face when he fails is clearly one of confusion.

He was recently and has FINALLY been cleared to begin work on weight bearing. Will loves to be UP high, to sit up high, to stand up tall, to see out and over. When you sit or lie, being up is a vestibular input you crave. And it finally puts you face to face with the world.

So last week, he got to do just that. Finally, there is hope that maybe some day, he will be able to bear some weight, perhaps even gait. The doctors say not to expect that, but hell, this kid’s been surpassing everyone’s expectations for a long time.

So the picture above is a perfect visual metaphor for my kid. Instead of complaining that he has to go to physical therapy, that he has to work harder than he ever has had to, to simply rise up from a seat,  that he has to endure clonus (spasms from extreme muscle fatigue), and being sore for days after, he champions on.

He was sweating so much that we had to put a towel around his neck. But look at that face. It is not one of pain or one that says, “I can’t.”

It’s one of joy. It’s one that says,“I can. I will. I want this.”

I couldn’t help but hear the Rocky theme song, “Gonna Fly Now,” playing in my head:

Gonna fly now, flying high now

Tryin’ hard now, it’s so hard now

Tryin’ hard now

Feelin’ strong now, won’t be long now

Gettin’ strong now

I’m on fire; flying higher

So, because Will champions on, Mom will too.

Even when I feel like throwing in that damn towel which is often daily and even hourly, I will get up too.  It’s what my kid wants.  It’s what my kid needs.  His nature is teaching me much more than my nature is teaching him… thank God.

As Maya Angelou says, “Still I Rise” because it’s what Will would do.

If he can, I can.

If he Will, I Will.