There is a constant lump stuck in my throat and tears that are literally a blink away. 4.5 years ago I couldn't have imagined a more delicate, emotional, and challenging journey to unfold for us. 4.5 years ago she was doing so well comparatively, and we were going to have the child who "broke the mold", who was the outlier, who didn't check off every damn box in the potential for CDKL5 directory. 4.5 years ago I told myself that she probably wouldn't sit, and if she did it would be around 3 as a method of self-preservation, but deep down I rooted for her, and could envision the excitement and party that was definitely going to unfold when she DID meet that milestone. 4.5 years ago we were blissfully unaware of the struggles that were occurring within her body metabolically and gastrointestinally speaking. 4.5 years ago we took it all day by day but woke up each day celebrating whatever Sonzee-stone she met.
Today on the couch in our living room we had another weighted conversation. This wouldn't be the first of its kind this month, and it certainly won't be the last. They are conversations that I never anticipated could occur in a casual manner, as we were drinking some cold brew, and while two of our kiddos were running through the house. Conversations that prompted us to keep sending the one child who was old enough to understand on various expeditions to keep him out of earshot because it probably wasn't the most appropriate conversation for a child to be overhearing. But as everything else CDKL5 related, we find ourselves dealing with a new normal, of completely abnormal and just going along with it, because that is all there really is for us to do.
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