Three years ago, we were concerned that Caleb was 9 months old and still not sitting up independently like Wyatt was. He seemed stiff when I held him sometimes, which we attributed to reflux when he was a newborn. At his 9-month well visit with the pediatrician, I (along with my mother-in-law who was visiting) voiced my concerns about Caleb’s development. I was brushed off as being a worried first-time mom and was reminded that the twins were born 7 weeks early, so it was ok that he still wasn’t sitting and surely he would be sitting soon. I even told her that when I “Googled” some of Caleb’s symptoms, I saw some mentions of cerebral palsy.
“Your son does not have cerebral palsy” she scolded. My blood boils just thinking about her tone and how I was made to feel like some hysterical know-nothing.
We had already scheduled an evaluation with our county’s Infants and Toddlers Program to see if he qualified for services to help him catch up to Wyatt. The therapists from that program said that he definitely qualified for services and encouraged us to see a neurologist. We were skeptical as to why he needed to see a neurologist, but didn’t question it. After all, we were explicitly told by our pediatrician that Caleb would catch up soon.
We had an appointment with the neurologist later that week and within an hour, we had a diagnosis.
Spastic Diplegia Cerebral Palsy.
Caleb needs an MRI. His CP may or may not affect his cognitive abilities, it’s too early to tell. He will always have cerebral palsy.
There is no cure.
My husband and I were devastated and numb. We dropped Caleb off at daycare and went to eat crappy sushi at a place that still elicits a lump in my throat whenever I drive by. We took turns crying and consoling each other, actual tears in our half-drunken beers. We were never sad because we thought Caleb’s life would be different from the one we envisioned, but rather sad knowing that he would have to work so hard to accomplish what comes so easy to most.
Heart-breaking phone calls to our parents made me realize that recounting information from the doctor was difficult (and thus the idea of writing a blog was born).
Luckily for us, diagnosis day was the worst part of our CP journey and every day has gotten better since. We have learned so much about the disability community, how to be better parents, heck, better human beings. Caleb has taught us that milestones can be whatever you want them to be and should be celebrated regardless of how long they took to achieve. Caleb’s positive attitude, ability to follow instruction and general silliness has set him up for continued successes in physical therapy and in life. Three years later, we are in a good place. Caleb is continuously improving and showing real gains in his journey towards independent mobility. He and Wyatt have a typical brother relationship where they’re best buds one minute and fighting over toys the next. Caleb is the sweetest big brother and loves cuddling (borderline smothering) Baby Parker every chance he gets. He loves school, playing outside, watching Frozen and being a member of our family. He has a great life and it is a pleasure to be his mom.
Actually, it’s an honor to be his mom.