Tuesday, April 12, 2016

A slump resulting in A CALL TO ACTION

Growing up I was always the athletic type.  I participated in pretty much every sport that was offered in whatever location we were living.  Softball ultimately became my game of choice.  I find it comical that my least favorite sport to watch is professional baseball, but I digress.  Softball was my thing.  I mainly pitched or was the short stop.  When it came time to my position at bat, it was typically 4th.  My nickname as well as the word written on the back of my shirt was "slugger".  The sport of softball and I clicked.  It was something I had a natural ability for, but at the same time I still had to practice religiously.  There were times that I struggled with my game and found myself in a hitting slump.  

I wish I remembered exactly how I worked my way out of those times.  That would definitely prove to be valuable information to me these days as I find myself in a constant fog.  The adjective I would use to describe my disposition...  "A slump".

I feel my overall performance level is well below expectations.  This is trickling over into every aspect of my life.  I feel inadequate as a mom as I am short tempered and I do not feel like I am giving all of the kids my undivided attention.  That part alone feels nearly impossible.  My mind is constantly racing; there is no way that my attention could be anything but divided.

As far as climbing out of the rock bottom pit we have been in in regards to Sonzee's health and development...it seems that challenge will be never-ending.  When I think she is on the mend, something random comes unexpectedly and knocks her back.  I wish things would get easier for her and stay that way.

In regards to my blog posts I feel like my slump is related more to the simple fact that I just do not feel like I have many uplifting words to share.  I want so badly to have words of wisdom and a nice little fortune cookie type of message that people walk away from the screen feeling all warm and fuzzy on the inside from reading.  I just do not feel like I have that type of stamina in me these days.  I try to abide by the "fake it, til you make it" type of approach...but the amount of energy it requires to simply "fake it" is even beyond my current capabilities.

In terms of Sonya's Story and raising awareness and finding a cure for CDKL5, it feels as if we have hit a roadblock of sorts.  While this blog provides a source of much needed therapeutic comfort, my main goal is for us to help bring awareness to CDKL5 at a significantly higher level.  We need the character string of CDKL5 to be known by MORE than just the children and families whom are personally impacted.  We need to reach farther out of our inner circles and get the disorder out there.  CDKL5 is important, our children are important!

ALL the children of CDKL5 need US to help them find a cure.  This is not just about Sonzee.  This is about bringing awareness for ALL of her CDKL5 siblings.  This is about helping CDKL5 gain momentum so more money can be raised, so more research can be completed, so children do NOT have to suffer, and so children do NOT have to die.  So families of these children do NOT have to suffer.  So NO ONE has to suffer due to CDKL5.   

For those of you on twitter our handle is @SonyasStory and please fill your twitter feed with #CURECDKL5, #CDKL5, or any other hashtag with CDKL5 on it.  For those of you on Facebook share this blog post and our journey.  For those of you with any type of media connection, sports connection, music connection, any connection...PLEASE CONNECT US!!!  Please help us tell Sonya's Story and that of her CDKL5 brothers and sisters!!!!  

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