Wednesday, June 27, 2018


It is the night before the first day of camp.  My kids excitedly packed their bags as soon as they each got out of the shower before dinner.  I am used to doing this act myself, and while the Type A part of me cringed letting them throw everything haphazardly into their bags, I took a deep breath and just observed.  I couldn't keep up with their excitement as I was ensuring they each packed their own sunscreens, goggles, towels, and every other item they will need in their backpacks.  I was glancing over the "camphouse" items for Sonzee's bigger sister and trying not to think about the fact that tomorrow should be Sonzee's first day of camp as well.  I know that Sonzee was able to experience Friendship Circle camp in May, but that is not the camp experience I am mourning tonight.

I found my mind drifting off into the distance, to a life that is not mine; what I would refer to as my alter-reality.  It was there I was packing a 4th backpack with two bathing suits and two towels.  Sadly even in my fictitious reality I have no idea what backpack Sonzee would be sporting or what bathing suit style she would prefer.  I think the saddest part of this daydream is that I cannot imagine anything about who Sonzee would have been had she been the typical child we anticipated.  It almost makes me more angry that I cannot even mourn properly, because this deficiency has taken away everything that I should know about my 3 year old.  I am left simply guessing and insinuating about her personality and preferences, but the truth is, she is unable to tell me specifics so even my dreams leave me anxious about the potential disservice I am causing.

There are nights like tonight where I wish Sonzee's CDKL5 deficiency did not exist.  Where we were just a boring, typical family with no obvious outward struggles and I didn't know anything about CDKL5, childhood epilepsy, or have any significant first hand knowledge about a profound developmental disability.  While this is and always will be the path our family must travel, there is still a significant part of my mind that is traveling an imaginary parallel journey filled with the "could haves", "would haves", and "should haves".

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