My oldest son has cerebral palsy. It took me a long time for me to say those words outloud. Not because I was I was embarrassed or ashamed. It was because most of me couldn’t believe he had cerebral palsy. As a special education teacher married to a special education teacher we felt so lucky when our son was born a healthy, average in every way, baby. Fast-forward 18 months and the week after I delivered my second son, and we received the news that our perfect first born had left side hemipeligia, also known as Cerebal Palsy (CP). I look back to those first couple of weeks post diagnosis and don’t know how I emotionally survived. I had a newborn baby who was born with his own (thankfully fixable) physical anomaly, and an 18 month old facing a life changing diagnosis for us all, I struggle to think about it now without tears.
Over the past two years it has been very easy at times to forget he has cerebral palsy. He walks, runs, writes, colors, talks, and is one of the most observant people I have ever met. There are days, weeks even where the every day tasks of putting his braces on or going to his appointments or collaborating with his therapists feel like the norm. Most recently his right arm was put into a cast through his occupational therapist from Boston children’s, in what is called constraint therapy. Research shows that this actually changes the wiring in the brain. He did so well with it, I’m talking not one complaint over the three week, that it too fell into our new ‘normal.’
But it’s the little moments that tend to jerk me awake and hurt the most. It’s when I pull up to his school early, see him on the playground, and watch as it takes twice as long for him to situate himself on the slide. Or when he tries so hard to climb up on a play structure only to have his friends be done with it by the time he makes his way up. It’s when he’s running in the back yard and his left toe keeps catching making him trip. Every time I suck in my breath and turn my head away so he doesn’t see the tears that can’t help but form.
When I first decided to seriously pursue writing a blog I have a lot of thought to centering it around my experience with mild cerebral palsy. Until my son I did not know a mild form of CP existed and thought I could try and spread awareness. The more I thought about it I realized that so little of our life is actually affected by CP and that my son is so much more than his diagnosis and I want to share the holistic story of our days rather than focus on one aspect. His life is more than CP, he is more than CP. Where there has been a way, he has found the will.