My son has terrible scoliosis and kyphosis due to his cerebral palsy, in other words, a twisted-twisting spine. Kyphosis and scoliosis do not describe the horror I felt as I watched my child go from a straight-backed, happy, active middle-schooler to a hunched teenager in constant “moderate” (!!!) pain.
We couldn’t stop this process no matter what we tried. He wore a brace like a lobster, 12-18 hours a day. It kept him from participating in school interactions because everything took so much longer to do; it made him worry his pants were falling down and he would embarrass himself in the hallway; it made him text people from elevators for help after he fell and couldn’t get up. He had therapy and exercise every day, in the time others went to piano classes or tennis lessons or just hung out. He practiced mindfulness and slept 9 hours every night, had ergonomic supports, ate a balanced diet with essential nutrients to support bone and muscle growth. And with all of this adolescent-boy-torture, his spine still kept on twisting.
The best doctors across the country and the best surgeons said the same things: Nothing we know works to stop this or reverse it in children with CP. We have no evidence for safety or efficacy of any interventions. Only anecdotes or experiences or worse, pseudo-medical people who prey on vulnerable parents by offering “comprehensive” – read expensive, non-reimbursed – programs that don’t really work. We need to watch and wait, and if it ever gets even worse, there will need to be a major spine surgery. And the most likely result will be lifelong back pain. But after all, 40-80% of adults experience back pain, so it isn’t all that bad, is it?
So, after all our attempts and the specialists’ opinions, I felt that my son and I were struggling and drowning in quicksand and no one could help us. And everyone knows struggling in quicksand makes things worse; but I was not willing to lay flat so that the sinking and drowning would slow down. Because this was my child’s life, so much more precious than mine. So I couldn’t quit struggling, and sometimes crying. And then, one day I was very lucky. My incredible sister said to me: “Since when do you ever stop hoping and since when do you ever believe those who tell you to stop trying? Your son is a strong and wonderful boy who is lucky to have you. If you don’t know the solution to the problem now, you will find it. You always do.”
She is right, I will find a way to help him, and it will be safe and effective.
And the first way I will help him, is by showing him that we will keep fighting this.
And I will keep researching new treatments for children with CP that work, so that my son is not the only one who gets better.
And I will remember to always give my patients and their parents hope. Because hope is the hand that helps us out of the quicksand.
And hope is stronger than the forces that twist my child’s spine.
Just watch us fight this together.