I was scrolling through my Facebook this week and there was a little girl who is similar in her presentation of CDKL5 as Sonzee, and she is now sitting unassisted. I was honestly so excited for her and even more so her family. She has no idea how much that little milestone will mean to them. It is one of those milestones I have shelved for Sonzee; it is just easier that way. After I scrolled past I did not keep thinking about her sitting, but then another image of her sitting appeared, and it bothered me that Sonzee never has gotten to experience that sort of independence.
I really do not know how or even if her life would be drastically different if she was able to sit unassisted. Would she even like it? It is not as if she would be able to crawl out of sitting, or interact with any toys, so maybe her being unable to sit is saving her from the frustration of being left in the middle of the room to essentially do nothing. I wonder why I cannot truly accept these limitations her body has on her. I wonder if it is just because there is an inescapable guilt that comes from not being able to help her achieve these developmental milestones.
I do understand there is not anything I can do more of to help her, it is either something her body is able to do or something it is not. It has little to do with any choices Sam and I have ever made regarding her medications. It is not because we do not have her enrolled in 12 hour daily physical therapy sessions. There was not something we did or did not do to cause her to be unable to sit. It just simply is not in her DNA.
But oh, how I wish it were.
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