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My daughter was diagnosed with Cerebral Palsy yesterday.
That means today I (currently) have 8 browser tabs open on my PC and another 3 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. (Just to give you a little peek into how I work) Research is how I cope. It is what I did with her IVH4 diagnosis (IVH stands for intraventricular hemorrhage. Which is a fancy doctor term for brain bleed.) and her NEC (necrotizing enterocolitis. 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 tried to escape the 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 were learning that nothing will be definitive with her. As I said in a previous post about her journey: “If you get to school aged (about 6 years old) without any issues, then you are probably all clear. There won’t be definite answers until then though.” So, we have been prepared for news like this.
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 negative about her diagnosis. I came to terms awhile ago (I think, unless I’m repressing something…) 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.
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No matter how well she is doing, I always get nervous before her Neuro and NICU follow-ups. ⚡What if I have missed a sign that something else is wrong? ⚡What if she's not doing as well as I think? ⚡Is her speech delay a sign that the hole in her brain is in the speech center? ⚡Is her right side motor delay worse than I think? ⚡Have I just gotten used to problems and think of them as "quirks" that she will grow out of? Adam is with her today, at her Neuro appt.. this is the picture I got after she got her book. 😍 We always create a list of things to tell the dr for him to bring. I used to bring her to all of her appointments. It used to be all consuming in my head: weights, stats, surgery dates, transfer dates, types of surgeries and reasons for them…. making sure every doctor has the right info, and all of the info… its exhausting. I stored it all in my brain and it left no room for my stuff. Now Adam takes her mostly. With a list. His head doesnt fill up and swirl with the info like mine does. I get pictures from the exam room with books. I can spiral on questions for a few minutes, then let go and get back to work. Today, that includes sharing my thoughts with you. #igbraindumpmoment #preemielife . . . . . #preemiemom #23monthsold #19monthsadjusted #nicuwarrior #mombrain #prematurityawareness #mytinytribe #hotmessmom #momtribe #theelitesuite #suitebootiful #suitebloggerscafe #bloggerstribe #bloggersofig #writersig #drawyourownlifemap
I posted this Instagram photo while Alice was at the Neurologist appointment in which she was officially diagnosed with Cerebral Palsy.
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