Tuesday, September 18, 2018

Thought but never said...

I should be folding the massive amounts of clean laundry sitting in the hampers; besides seeing the other kiddos, that was my 2nd reason for allowing Sam to switch "night duty with Sonzee" for tonight.  I have somehow managed to order two Shutterfly books, one 16 x 20 canvas of our most recent family photo shoot, made and stored the baby his food, ate some amazing dinner brought to us by our longest Phoenix friends (and amazing cook), answered a lot of texts, watched our 2nd oldest yank out another tooth (gross, it is always so gross) but still have not folded the dang laundry.  Instead an earlier text conversation is repeating itself in my mind.

"It must be so incredibly hard to watch your child go through this..."
The replies I wrote and erased:

Watching her seize I am honestly used to, except on occasions.
I am used to it all.
Eh, she has been in pain for so long, it doesn't even phase us anymore.

I settled with:
"It sucks :-("
I debated sugar coating my reply.  That is usually my " go to".  I try to pretend.  I do not know why, who am I actually fooling?  I settled on the middle ground, with a quick and succinct reply of "It sucks...(semi cushioned) with the sad face".  It is the truth, it does suck, and the sad face is how I have felt the majority of the time when it comes to all things Sonzee.  The reality is this is so incredibly hard.  In fact it is so beyond incredibly hard there really are no words to do any of the feelings justice, and unless you are a parent of a child with CDKL5 or some other disability or genetic mutation that results in a nonverbal child along with every potential pitfall that could possibly occur in life, then there really is nothing comparable to offer the situation to.  

I cannot even find a way to express the extreme guilt, sadness, anger, and broken heartedness I have felt since Sunday.  Before now I could not really imagine feeling worse than I already have over the past 3.5 years of her life.  These last 30ish hours have brought on an entirely new level of all of my feelings.  More than 5 people today reached out to me concerned they were the ones who potentially hurt Sonzee, they are not even related to her, so I can assure you telling me any similar phrase to "Do not be hard on yourself", is never going to make a difference.  I am her mom, I should be able to know what, how, or if ever, (and g-d forbid) who is hurting her.  The depressing reality is, I DON'T AND I REALLY DO NOT THINK I EVER WILL.

This feels like the heaviest blanket of extreme parenting failure there ever could be.  In addition is the paralyzing fear of wondering what if we cannot find an actual fix? Not a band aid, but an actual useful, ongoing, actual real permanent fix?  What if she keeps getting hurt?  What if we wait too long to bring her in?  What if we keep causing her to suffer more and more?  Doesn't she suffer enough as it is?  

So if you ever find yourself thinking "It must be so incredibly hard to watch your child go through this..." the brutal honest answer is that it is something I wish and pray for with every ounce of my being that you never have to ever learn about, think about, imagine, or experience, because no parent should ever have to experience this form of parenting and from the bottom of my heart to every parent who does..."It sucks :-(". 


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