By Lyla Novakowski
I am going to begin by saying that you are worth more than any diagnosis. The story of my son and me is much like the story of any loving parent and their child. There are giant successes, infinite more failures, copious amounts of coffee, and a lot more questions than there are answers. This is as much of a story about cerebral palsy (CP), autism, agenesis of corpus callosum (ACC), and 15q duplication syndrome (Dup15q) as it is a story about time management, filling out forms, and figuring out how to fight. Our story is also about the importance of mental health and parenting and why having an incredible spouse is as important as living in an incredible state that has Katie Beckett program. Most importantly it’s about having an incredible kid, who against all odds still proves today why he belongs here and how every day he never ceases to amaze me.
The reality is that my son’s journey to cerebral palsy didn’t happen because of stroke or trauma. Some would even argue that this alone would disqualify him from even receiving that title. That it would mock the whole diagnosis as much as his diagnosis of autism. However, as we go through this journey, I hope you can see why our neurologist and all the fancy people we work with say he battles these things. I hope you are open to trying new things—if it works, great; if it doesn’t, that’s okay too. Maybe you read this, and you don’t feel alone. That’s honestly why I am writing this—for other caregivers regardless of their children’s diagnoses. We can call this experience spastic CP or autism or maybe later we find another name to give this. Regardless what we call it, my child’s experience will be different than yours no matter if we sit under the same umbrella or not. As parents we share the common storm of late-night panic attacks, fighting with insurance companies, filling out so many forms that your hands cramp, and of course, my favorite, the IEP meetings and politely explaining to a room of experts why your son needs X, Y and Z even though X, Y, and Z seem obvious.
Systemic ableism is the worst.
I first found out about the baby’s enlarged left ventricle and agenesis of the corpus Callosum when I was 26 weeks pregnant. My first real taste of ableism was when our award-winning high-risk gynecologist decided to offer me a late-term abortion before even asking me how I felt about this information. It felt like a generic card she had in her pocket. ‘“Oh your baby is different; clearly it’s broken’.” How someone can react this way over a probability still amazes me. This systemic ableism continued after the prenatal MRI, as I sat in another room of experts all telling me how important all this testing was, even though I lived in a state where there was no support because we made too much money to qualify. And of course, they asked with that strange amazement, “So you’re continuing with pregnancy?” At the time Virginia had no Medicaid waiver so I guess it was common for people to give up before knowing he future of their child’s life. I don’t judge others, but I was and still am offended that my baby was counted out before he even took his first breath in the world. The neurologist did tell us we had a high probability of cerebral palsy or autism or maybe both, though the risk for seizures was low at the time, and he didn’t require a stent. A stent is neurological tube that allows for stronger blood flow to the brain. There are also many people in the world that have agenesis of corpus callosum, and you would never know it. The neurologist didn’t tell me that; I knew that from college and my brilliant husband. For that reason, we decided it wasn’t right for us to have a follow follow-up MRI at two days old, and we decided not to do the genetic testing at that time. I simply wanted to enjoy my baby and embrace him for the incredible human that he is.
One month into the world, and I wasn’t ready for it.
Our Early Battles:
GERD
Weight gain
Hypotonia/ Hypertonia
Pooping
Postpartum Depression
Sleep