Tuesday, April 23, 2019

Undesirable Mess

My thoughts today have been all over the place, in fact, every other thought I have is contradicting itself, which isn't exactly helping me sort anything out.  I cannot pinpoint if there is one specific thing that is causing the chaos, but I am feeling a bit like a cranky overtired toddler who is trying to prove that it is not bedtime while falling asleep in a highchair crying.

I am trying to find positives in all the negative situations that Sonzee is dealing with and besides the fact that the task itself is exhausting, there is a part of me that does not want to find any positives.  I just want to wallow.  But I can't.  Or I should say, I shouldn't.  That isn't what I am supposed to do.  Those of us in this life are supposed to look at the good, and to feel/recognize/acknowledge that our children are gifts.  We are supposed to see the silver lining, or the bright side, and not get caught up in the dark hole tornado pulling us down.  We aren't supposed to focus on the negatives because it isn't healthy, because G-d is good.

But nothing about this life is actually healthy, and personally speaking, I don't know if it matters whether G-d is good.

There is nothing healthy about watching your child seize multiple times a day for a minimum of 15 minutes each time.  There is nothing healthy about having your child be fed into her intestines or via a central line going into her bloodstream because her stomach shut down years ago.  There is nothing healthy about giving your child non-FDA approved for her age grown man medication dosages that are equivalent to water in terms of how her body reacts to them.  There is nothing healthy about making life-altering choices and then wondering if those choices were, in fact, the "best" choice and or what would have happened if the other choice was made.

Like I said.  Nothing about this life is actually healthy.

So while I want to give myself a pep talk and throw some inspirational words on the screen and press "post", that isn't what is going to occur.  Today I am just going to honor the undesirable mess that was thrown at us 4 years ago after the spontaneous de novo CDKL5 mutation happened to occur at some point while Sonzee was in utero by letting myself grieve all that has been lost and will inevitably be lost as we continue on this journey.

The Mighty Contributor

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