I’ve been pretty silent these past few months. Enjoying life as a family of five. My creative career has been blossoming in this new area as I watch Lloyd forge real friendships at school, Walter toddles around the house and Mabel points at anything and everything she wants to have hand-delivered to her, demanding THAT in the kind of tone only a redhead can use. I’ve been busy with work and I’ve found an amazing amount of joy in helping bring awareness to both #craniosynostosis and #nicu. They share September as their respective awareness month. Motherly even reached out and asked to share my NICU experience and another twin mama’s NICU stay that I documented. At almost 3 million views, it serves as a major reminder that we are not in this alone and reinforces how important it is to share the hardest moments ... to shed a little light on the darkest parts of our journey. Which brings me to today. With Walter on the go, I’ve noticed these past few months that Mabel is having some issues with balance and standing. She’s not even close to walking and when she pulls herself up to attempt to stand, she does it on pointe. On top of her toes. She will rarely put weight on the ball of her left foot. Lloyd’s taken to calling her “twinkle toes.” She’s been in physical therapy to avoid getting a tight tendon, but making little progress. This may come as a surprise, but Mabel is stubborn.
Last week, our physical therapist suggested we see an orthopedic specialist, suggesting it may be time for a brace. So you can imagine my surprise when I went in to the appointment expecting some new stretches and a possible brace, and instead left with a possible diagnosis of cerebral palsy. The doctor was kind, and took his time explaining the signs he’s seeing. I can’t pronounce them because it was hard to hear much over Mabel’s screaming. He went on to explain that Mabel’s condition checks a lot of the boxes. Partial placental abruption. Preterm birth, and of course, you remember the hot mess that was my pregnancy ... the list goes on. I didn’t cry. Mabel was screaming enough for the both of us. I did ask questions. I don’t know much about CP. Apparently there isn’t a definitive test that can give you a clear “yes” or “no” answer. Instead, it’s a spectrum and three of her four limbs seem to be responding appropriately. It’s only her left leg that is displaying these CP symptoms. He said it could be coincidental that she happens to fit the profile, and she’s displaying the symptoms, but it didn’t sound likely. I haven’t Googled anything. I haven’t really processed anything. I have cried quite a bit. Mostly at stupid things, like the thought that my baby girl may never take a dance class. She may struggle to walk. There are a lot of ways this could play out. For now, we wait. I hate waiting. I like knowing everything. All the time. But it turns out, that’s not how life works. It would seem we have added another hashtag to our growing list of experiences. #cerebralpalsy A new adventure awaits our family as we learn to navigate this new possibility. Honestly, I’m exhausted. I’m heartbroken. I’m feeling just a bit fractured. But it’s a path we will walk together, even if it means some of us need to be carried along the way.