One Day After My Child's Cerebral Palsy Diagnosis
My daughter was diagnosed with cerebral palsy (CP) yesterday.
That means today I (currently) have eight browser tabs open on my PC and another three on my iPad with definitions, national organizations, scientific research, personal stories, etc. all about cerebral palsy. I don’t even know if I should be capitalizing the words or not. That’s how far behind I am on the learning curve of CP (I learned that many people call it CP, so at least that.) Alice was diagnosed with it yesterday though, so today I want to fall into my computer and wrap myself with pages and pages of information so that tomorrow I can be an expert on the topic.
I recommend not being around me tomorrow, because I won’t be an expert yet, and I will be mad about it. Research is how I cope. It is what I did with her intraventricular hemorrhage (IVH4) diagnosis — which is a fancy doctor term for brain bleed. And her necrotizing enterocolitis (NEC) — which is a dead or dying piece of intestine. Now that she has been officially diagnosed with cerebral palsy, I will do the same.
I haven’t told many people yet. I am still trying to navigate how I’m feeling, but mostly I am just craving knowledge on the subject.
Here’s the thing about Alice’s diagnosis, and I know it’s not the same for everyone but, I was not completely shocked by it. We knew from before she was born that there may be challenges to face with her. She escaped my womb at 22 weeks, so even that she lived is more than we initially expected. Since then, every step of the road has been another “we don’t know what will happen” or “we don’t know if she will be OK.”
For 23 months we have been up, down and sideways on how she is doing, and the whole time we have been learning that nothing will be definitive with her. Until it is.
The difference now is that there is an answer. It’s only one thing and there could be others, we still don’t know, but there is something. And that something, “mild cerebral palsy,” answers most questions we have about her development, milestones and care plan. That something also gives us access to a whole range of services for her. To help her with things that she would’ve been up against whether she was diagnosed or not.
I, surprisingly, don’t feel any negativity about her diagnosis. I came to terms a while ago with the anger and guilt I felt towards myself for her prematurity. So, I don’t feel there is anything to be upset about. Alice is the same person she was two days ago. She is sassy, happy, opinionated, sweet, empathetic, bossy and hilarious. She is learning how to run, and looks adorable while doing it. Always with one arm waving to help her balance and the other up at her side with her fist clenched. She loves chasing and being chased by her brother. Her toe often drags and trips her up while she’s doing it, then she gets up and keeps going without missing a beat.
I’m not sad or happy, but I’m not indifferent either. It’s still a lot to absorb and navigate. At the moment I am trying to allow myself to not classify how I feel. Sometimes it’s best to just feel without labeling your feeling, and that is what I am currently working on.
While also sifting through tab after tab and page after page of information.
A version of this story originally appeared on Owl Be Me.
Getty image by Archv