"Are there ever even split seconds where you forget you have a child with CDKL5?" read a text across my screen a week ago. I replied with, "I haven't had that I don't think". My friend explained what had occurred that prompted the text and I replied with a sigh emoji. The conversation ended. A little over a week has gone by and I honestly had forgotten about the text, until yesterday morning.
Sam left on his drive to NY with a trailer full of all our things and I am still in Phoenix with all of the kids. The older kids and baby brother were running around the house, some in their pajamas, some actually dressed. None of the girls with their hair brushed, and it is debatable if any really had brushed their teeth when I asked. I was going between the kitchen and Sonzee's room getting her refrigerated meds and making her batch of food, sorting it into containers, and then bringing in what she needed to begin the day. I changed her diaper, picked out her outfit for the day, started her feed, and then began giving her meds. Part way through her TPN/Lipids finished and I got out my supplies to heparin lock her central line. After I was finished I hooked her feeding bag on her Rifton chair, scooped her up, and simultaneously words flashed across my mind as if I was replying to a freshly asked question.
"How can there ever be a split second where I forget I have a child with CDKL5?" Whether she is awake or asleep there are always tubes coming out of her body. When I watch her sleep she is always hooked up to a machine. The only way for her to get in and out of a chair or car is with full assistance. She cannot get from point A to point B without someone else being involved. My dreams are beyond having substantial hope for her to have a functioning CDKL5, and my nightmares consist of what is going to happen because of her CDKL5 deficiency. There are no split seconds of forgetting she is not typical; thank g-d for that too, because coming back to reality a split second later would most likely cause me to fall to my knees and suffer another form of diagnosis day, and I am over that repetition, it happens enough as it is.
As I brushed her hair and picked out her hair tie, I was still thinking about all of my split-second thoughts over the past 4+ years. How does she have CDKL5? Why does she have CDKL5? What if she never had CDKL5? What if she were typical? How would our lives be different? How would our family look? What would it be like to have 5 typical kids? Would we even have 5 kids? What is a typical life? Why can't I remember what life was like before CDKL5? What kind of parent was I before CDKL5? The list continues, there are so many split seconds in a day, but none of them are ever filled with that minuscule bliss of forgetting she has CDKL5, but maybe like everything else, it is for the best.
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