Thursday, October 8, 2015


"I like the pictures with her smile. Don't put the other stuff.  And I can't read what you write, it's too much."
Someone I know on an acquaintance level said these words to me recently.  At the time all I could muster along with a smirk was, "It's not so common that she smiles".  As usual I have replayed this conversation on repeat in my mind multiple times and of course I have now changed my reply 100 times.  I wouldn't say I am offended, but this paired with another recent conversation with someone else has made me want to grab people by the shoulders and say "SERIOUSLY?!?!” 

Let me go ahead and state the obvious here.  I LOVE the pictures of Sonya's smiles.  Even though she is 7.5 months old, she is still at the point developmentally where is figuring out her smile.  That point where the smile comes out wide mouthed, awkward, and a bit scary.  She turns her head to the side in such an excited manner because of her vision that I have difficulty capturing the true cuteness of the smile.  If her head stays still she has the cutest closed mouth grin.  They all take an act of congress to achieve, with a cheerleader or two on the sidelines (myself, Sam, and/or a sibling), and her determination/strength to make the smile happen.  Oh, how I WISH they happened more often so I could post more of them.  To be honest the smiles that get posted are usually "staged" in the sense that I want so badly to see one; I spent 5-10 minutes working for it.

I am sorry but not sorry about "other stuff".  I do understand how depressing and sad it can be to solely see pictures of Sonya sleeping or not "being present".  Trust me; I know it isn't uplifting or happy.  I know this because I live it.  Every minute of every hour of every day.  Believe me I do my best to spare you the video footage of seizure activity we take to send to her neurologist.  If only I didn't have to watch or be present for those 5 or so minutes either.  If you feel that my blog posts are too melancholy and dreary to read, it is unfortunate because it is the sad reality CDKL5 presents with.  It is also a shame because if you read them, you would know they aren't all somber and I try to give a little peak of hope in each one.

I am trying to just deal and make the best out the hand of cards I was dealt.  This is obviously not the deck I would have asked for.  I wish I could just write about 24/7 happiness and joy and all things grand, but I can't.  That isn't life in general, and it is definitely not Sonya's Story. 

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