Sometimes You Gotta Run Before You Can Walk
No more fitting time to start writing again… there was nothing much to say for the last few years and now, suddenly there is so much to say. Plus, I have to admit that I have been haunted by the friend who once said ( at a cocktail party no less) that I was making everyone too depressed by talking about Max’s struggles with his CP. I should have called out that friend for “fake news” but a few years ago that wasn’t even a thing!
I had nothing to say because I had committed to telling the truth about having a son with CP and what that felt like and how it impacted our family and to tell you the truth, the last few years have been surprisingly normal. Sophie is almost 17 years old and the most interesting, wonderful, smart, funny, pretty, loyal, strong, capable, likes physics, about to apply to college person I know. Max learned to walk following muscle lengthening surgery and once he got started, he never stopped. We slowly moved away from his walker and our hand holding and he travelled through middle school on his own. He even walked home on many occasions proving the sight to be a real tear jerker for some of our neighborhood friends – one even circled the block to make sure she was really seeing the person she thought was Max. Max taught himself how to run and overcame many fears and anxieties that were holding him back. He slogged through the untold horrors of Edgar Middle School, had a spectacular Bar Mitzvah, went to overnight camp, played ice hockey, and selected his courses for high school.
The untrained eyes (everyone except us) saw miracles, bright futures and easy living. Behind the ever present ear buds, snapchat filters and ubiquitous wool beanie, was a boy who was fighting creeping pain, muscle tightness, complete and total fatigue, and a return to anxieties of how he was going to get through the day. This, my friends, IS life with CP. He begged off plans, spent more time alone and began to get quieter. Of course, that describes most 13 year old boys and while there is no cure for adolscent boy, Max was actually sending us a message that his abilities, while strong, are just not sustainable and he was inching toward his expiration date. This is real… you get better, you run, you jump, you play, and then you get bigger, taller and heavier and it all gets to be too much.
Years ago, in our fits of research and investigation, we learned of a surgery that we swore we would never, ever, never do, and in true Rubin fashion, we are about to do that very thing we swore we would never do. We held the SDR ( Selective Dorsal Rhizotomy) card in our back pockets, under lock and key, and hoped we would never need it. While I read constantly about people doing it, saving for it, traveling around the world just to get it, I secretly thought they were crazy – seriously, mentally ill for agreeing to open up your child’s spine, remove a vertebra, separate out the spastic nerves and systematically cut a huge percentage of them so that they are never active again. You essentially cause paralysis of a type with the hope that the good stuff will take over the bad. Research has shown that by removing spasticity, there is less pain, tightness, weakness and fatigue. Many people learn to walk with a much more typical gait and the overall health and function into adulthood is much improved. So, why the hesitation you wonder? Aside from the overall terror-inducing realities of neuro-surgery, there are some very high costs. There are financial, academic, social, emotional, and most visibly physical costs. Max will wake up from the surgery – while the rest of the 8th grade is taking the PARCC Exam- unable to move his body in a way that he is currently able. He will not be able to sit up, walk or stand without enormous amounts of assistance and therapy. He will be in pain and at point ZERO… AGAIN. He will need to do learn to do everything he now takes for granted with a completely different body, and that can take months, if not years. The expectation is that he will be able to regain his abilities in ways that surpass his current level of functioning, but there is always present a risk that he won’t. We, as his parents, have had to make a choice that I don’t wish on anyone. On Friday, a few short days from now, we are taking away the running and walking has worked his entire life to achieve. He will spend the next 4-8 weeks in the hospital and he will work to find a new and healthier way of doing everything.
I have enormous capacity for denial and I am choosing to activate that super-power and believe that he will recover completely and quickly. I have looked for signs from the universe to tell me that we are right to do this and I have found them in unlikely places. Together we have sought the counsel of top doctors and the world’s most important resource – other CP parents. We have scheduled and planned and cried and I have cleaned,organized, cooked and shopped and now there is nothing left to do but wait until Friday.