Our lives forever changed when our Sonzee bear entered into this world. It wasn't just mine and Sam's, it was also her two sisters and one brother who became immersed in a world of medical jargon, hospitalizations, and talk that is not exactly suitable for children. They (as most children do) adapted quickly to our normal and made us as parents even more proud than we knew was possible as we watched them interact and include Sonzee in their sibling activities. No matter what though, it never was the older sibling experience that they would have asked for. Sonzee's oldest sister wanted (and still wants) nothing more than to hold her and walk around, or hold her hand and help her walk, or get on all fours and chase her around. All of these experiences have just not been possible, and while sad, our oldest as resilient as anything, has made the best out of the situation.
When our oldest found out we were expecting this time she was so excited, I was so excited at the hope of providing her a new healthy sibling that she could tote around and interact with in a more typical manner. Apprehensive but optimistic we answered her with "g-d willingly yes", and "hopefully that will be the case", as she asked if she would be able to do all the things she isn't able to with Sonzee. Fast forward to 3am on the morning her baby brother was born. She was too tired to sleep once she woke up and found our baby sitter in our house and so when Sam went home to grab some items the first question he was met with was, "Does baby have CDKL5?"
We did a screening during our pregnancy which indicated at 97% her baby brother does not have CDKL5, so Sam told her g-d willingly no. I don't think I mentioned to anyone that our oldest asked that question because I was honestly so heartbroken about it. I wasn't heartbroken that she was concerned or that she asked in general, I was heart broken because with her asking that question it showed me just how impacted she has been by her sisters diagnosis. In her almost 8 year old way, she let us know she too is scared of her baby brother not being typical and or healthy. I honestly can't and don't blame her, as a parent I am petrified of anything being "off" with this little dude. It is just part of the everlasting scarring that is brought into a family once they become a rare statistic.
As my oldest holds the baby and he makes random, jerking movements more than once she has either stated "that looks like a seizure ema", or "is that a seizure". I have to admit my heart skips a beat each time she mentions it, yet attribute it to any potential denial or overt confidence in my gut, but I assure her that "babies do weird things". I am continually talking myself off the proverbial ledge of panic attacks, and have managed to have only 1.5 in his 12 days of life, I will take that as a success. Thankfully our pediatrician understands and is quick to reply to my messages of panic. I think it is going to take us all some time to accept that our little guy is (appearing) healthy and (g-d willingly) typical. While there is some comfort that it is not just me, I so wish it wasn't my 7 year old who is laced with this same burden.
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