Wednesday, June 8, 2016

Different, but the Same

I have been unsure of what I feel like writing these last couple of days.  It is not for a lack of the running commentary through my head, but more of I cannot figure out what thought I want to expand on the most.  As I have been dillydallying on a current post I have been rereading and even reposting some of the ones from last year that those of you new to our journey might not have read.  So much has changed since June 8, 2015, yet so much is the same.  One whole year has gone by and when I look at Sonze for a brief moment, it dawns on me that my 15lb “baby” is just about two months shy of being a year and a half old. 

The reality of how things have changed around me usually occurs after scrolling through my Facebook feed and seeing the pictures of my friends adorable children walking, pushing toys, interacting, and just being so toddlerish cute.  Then that gentle reminder sets in that Sonze either is a couple of days or weeks older, or was born within a month of that child.  I often forget because when I look at her, she still looks like she did when she was about seven months old.  Trust me when I say that seeing these other children does not make me envious, but more it bring out “the curious”.  To be honest it has been awhile since I took that trip down fantasy lane wondering what LIFE would be like if Sonze did not have a CDKL5 mutation, what SHE would be like.  I am pretty sure my brain has blocked this from occurring frequently to spare me of the pain that accompanies these thoughts, because if I am honest, it hurts.

I absolutely adore our little bear’s personality.  It brightens my day when she has one of her “on” days.  The way she smirks, the way she interacts with others, the way she entertains herself, the way she is just a happy and content baby when she is not in pain or bothered by anything, they all create the best Sonzee Bear.  However, if I close my eyes ever so slightly I can see a petit little dirty blonde, blue-eyed girl running and playing with her siblings trying to be part of the commotion.  I can hear her say “aba”, because that is the correct name to learn first in this house, as Sam has trained all of the kids and I do not argue because as a result “aaabbbbaaa” is who they call for at 3am.  (I know, I really am smart)  I can imagine her oldest sister including her in everything because after all, she is her twin girl.  Life would be crazy for so many other reasons, it would be a different kind of joyous, and I would be drinking skinny girl margaritas for other reasons.


Along with these thoughts that I need to acknowledge in order to have some space from them for a while, it dawned on me that soon she will be two.  Time is flying by in a way that I cannot even process.  I used to want time to stand still so I could savor the little moments, so I could bottle up the cuteness that occurred with each child at certain stages.  With Sonze, I want time to stand still, but it is more due to panic.  Panic that if I do not stop the clock, the time will keep ticking by, but she will just fall further and further into the rabbit hole.  As time goes by, she will continue to get further from the expectations of her age.  While I accept what a CDKL5 mutation does to a child’s progress, and while I will love Sonzee no matter what and I will support her development whichever ways it occurs, my heartaches for the things that will be different, but exactly the same.

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