I can think of so many things I wish I had known before the doctor diagnosed my beautiful daughter with cerebral palsy on that perfectly sunny summer day some months before her first birthday.
I wish someone had told us that although having a diagnosis will allow her to access medical treatment and therapy to help her succeed, it does not change the beautiful soul we already know and love so dearly.
I wish I had taken a moment to snuggle her in my arms and realize she is the same amazing, smart, and snuggly baby she was before our appointment.
I wish we had known about the hard days — and that we were allowed to have them. I wish I had known that I was not alone, and that there was an amazing network of moms who would embrace me with open arms. They would be there to pick me up on those hard days, and give me space to grieve and heal.
Most importantly, I wish I had realized that having cerebral palsy was just ONE thing about her; it was not the defining characteristic of her entire life. Frankly, someday, it won’t even be the biggest or the most interesting thing about her.
Time passed, and I agonized over telling her that she has cerebral palsy. The where, when, and how haunted me for more than a year. At the time, I thought it was a really, really big deal. I consulted several social workers and therapists and tried to understand the “best way” to introduce her to cerebral palsy.
Looking back, it feels almost silly. All that anxiety, planning, reading.
Sometimes it’s hard to even remember how I felt back then because it all seems a little blurry. It was almost like the planning period before a big event — after the event happens, you hardly remember the “before.”
I do remember, though, the first time I used the words “cerebral palsy” in her presence. She exclaimed that her favorite Daniel Tiger’s Neighborhood character, Chrissie, has [leg] braces just like her.
“This is it,” I thought to myself. “This is the best moment I’m ever going to have to bring it up, ready or not.”
“Wow, buddy! She does have braces just like you! Chrissie has CP, just like you do too.” And that was that. She went back to happily watch her show, and I breathed a huge sigh of relief that was so big it made me feel a little dizzy. We had previously decided to use the abbreviation “CP” because it was easier for a 2-year-old to pronounce and understand. She was unfazed, assigning little meaning and importance to what I had just said.
The beautiful truth is, the day I first told her about her CP probably won’t be a defining moment in her life, because she was really too young to remember it. It was, though, a defining moment in mine. It was a shift in the way we related to each other, and for the first time since her diagnosis I felt like I wasn’t lying to her anymore. It was in that moment I found the power of being honest, open, and matter of fact.
And now, some years later, we’re happy and generally well-adjusted. We have a wonderful team of doctors who take pride in helping her live her best life. We’ve found wonderfully inclusive places that allow her to pursue her interests and passions outside of school and therapy. And maybe most importantly, we know where to turn when we have bumps in the road, and we’re thankful for our well-established “tribe” that’s always there for us when we find one. Mostly, these days, we’re just thankful, because we all understand that her cerebral palsy is just ONE thing about her.
When we started this journey, cerebral palsy seemed like a really intimidating disability, mostly because there are so many misconceptions that have been perpetuated for decades.
Like anything else, it’s important to know the actual facts. Like how CP is the most common motor disability in children, affecting about 1 in every 345 children. And how CP can affect different parts of the body — all four limbs, one side of the body, or both legs. And how roughly 60% of children with CP can walk independently, and motor disability can range from minimal to profound. And how CP can be a result of being born too small, too early, stroke, or birth complication, but the specific cause of CP in most children is unknown.