Hart is doing wonderfully. He is hardly considered “delayed” in any of his milestones and is functioning right alongside other kids his age. He runs around on the playground, he’s started identifying colors, he speaks in full sentences (sometimes), and finishes the ends of our nightly prayers. He even started preschool this year!
A little background: The moment Hart was born I knew something was atypical. He cried so much even the nurses didn’t know how to soothe him. And he suckled on my breast shallow and often. His limbs were stiff. He was easily startled. He learned to focus his eyes later than Hayes. And although he grew at a typical rate, laughed on time and played with toys, but I just knew something was different.
All the doctors and therapists told me I was just being an overly cautious mother. I thought I was losing my mind, but I insisted upon an MRI.
That MRI confirmed a diagnosis of Periventricular Leukomalacia or PVL which is brain death caused by lack of oxygen. This is often a precursor diagnosis to Cerebral Palsy.
Since that diagnosis I threw myself into researching treatments. I spoke with doctors in Chile, Panama, and Egypt. I spent 6 weeks in Los Angeles with Hart doing intensive therapy. I spent 4 weeks in New Orleans going into an oxygen chamber with him every day. I continued the oxygen therapy in St Louis for an additional 8 weeks for a total of 60 “dives”. I tried (and failed) to get him into a stem cell study at Duke using his sister’s cord blood. I got him signed up with the Missouri state program, First Steps, to do every type of therapy available. I researched and found private therapists when we traveled so we never skipped a beat. I did all of this between his first and second birthdays.
Now he is 2 years and 4 months old. He has somewhat plateaued in his physical progress which can be very disheartening for a therapy mama like myself. But he does all the typical things for a kid his age like goes up and down stairs, insistS on buckling his car seat himself, “jumps” from the coffee table to the couch (I quoted “jumps” because he doesn’t actually lift both feet off the ground at the same time), and hits baseballs off a tee. He struggles with balance – but this is hard to teach – so his therapy goals have shifted from physical therapy to making speech therapy the main focus. The intention is to help him learn to communicate and annunciate better (despite him speaking in many full sentences).
I wanted to tell you all of this before I tell you this: yesterday Hart was diagnosed with Hypotonic Cerebral Palsy.
I was expecting this diagnosis. Even though he’s the same kid I expected it to hit me hard. But it didn’t. It didn’t hit me hard at all. In fact I felt relieved. Think about it this way: it was as mundane as going through life every day without putting the lid on the toothpaste and then finally, I got to put the lid on. That’s how simple and right it felt. (I even had a dream the night before about being at the doctor and receiving the diagnosis and being unfazed.) This is the once dreadful diagnosis I knew was coming since that fateful day I googled the right thing and it hit me like a truck: CP. I knew it was CP since Hart was a few months old. I just knew.
My older cousin has CP. I never saw him walk. He’s also deaf and doesn’t really speak. This has been my only frame of reference to Cerebral Palsy my entire life until now.
I didn’t realize that there’s a very broad spectrum of CP and it’s neither shameful nor sad to land anywhere on that spectrum.
But isn’t he doing so well? Why did he get this diagnosis? What does that mean for him? Will his therapy change?
Hart is doing great which is why I told you about how far he’s come. In fact, I was surprised that he got the diagnosis of “hypotonic” (which means he has low muscle tone, or “floppy” limbs) because his limbs have always felt so stiff and hypERtonic to me. It’s important to understand that people with CP often have mixed muscle tone (hyper AND hypotonic muscles). His neurologist explained that probably due to all of his therapy his “stiff” muscles have become “less stiff” and now the main focus has shifted to his areas of low tone (like his core). Hallelujah! The therapy worked! Which is proof why early intervention is incredibly necessary for anyone who even suspects something might be atypical. If I hadn’t advocated for Hart he would’ve lost 16 months of therapy until he got his CP diagnosis. The younger the brain the more malleable it is and able to form new neuropathways that will be there for life.
Cerebral Palsy literally means “brain paralysis” which I find to be an exceedingly misleading and ridiculous designation. Hart’s brain isn’t paralyzed, but there are some areas of damage. CP quite simply manifests as a motor disorder. That’s it. Yep. It has nothing to do with cognitive function, hearing, etc (although these are deficits often found in people who have CP they are referred to as “comorbidities” and not CP by definition). You’ve seen Hart walk: he’s a wobbly Humpty Dumpty preschooler. What you’re seeing is his CP.
Hart’s new diagnosis really means nothing different and changes nothing. It just allows him to continue receiving the therapy he’s already getting. (And I will continue to adapt to his needs as they evolve and change. For instance our main concern at the moment is balance and marking areas of danger so he can train his brain to react to hazards in ways that don’t apply to you and me. Some other time I can go into this and other adaptive techniques I use to help his brain.)
Hart will live a full, independent life. He will face challenges his siblings won’t and alternatively they will face challenges he won’t but we just don’t know what those are yet.
A diagnosis isn’t limiting, people are. We are all born beautiful and perfect and then we learn we are too fat, too short, too ugly, too inept, too… everything. We place others in boxes dependent on their labels and we unconsciously allow ourselves to live within those boxes: woman, college graduate, high-school dropout, professional athlete, Cerebral Palsy. I am choosing to celebrate what makes Hart different and raise my children with the encouragement to live their lives out loud and never let their differences limit or define them.
My hope is that Hart can inspire others with a “diagnosis” not to hide it for fear of judgement but to wear it as a badge of honor, a source of pride for all the hard work he’s accomplished that most of us will never understand.
So today we celebrate World Cerebral Palsy today. Hart earned this very special 1 out of 500 diagnosis just in the nick of time to celebrate! And celebrate we will!
(Parents: if any of you are concerned your child may be on the CP spectrum please push for early intervention, it could change the entire course of your child’s life. The brain is a beautiful thing. For more information on Cerebral Palsy please visit https://www.cerebralpalsyguidance.com/cerebral-palsy/)