Tuesday, July 5, 2011

So its been a little while since I've posted ,I start wondering why am I
 doing this? It doesn't even look like any body is reading it,then I decided maybe someone will read it someday and understand or even relate.
I guess today I'm feeling isolated,its July 5th and all day at work everyone couldn't stop talking about what a great holiday weekend they had,the party's, the fireworks, the food.
I miss those times .I don't want to sound like I'm complaining at all.
please don't get me wrong I gladly give all that up to care for my daughter.
that's why I guess I need someone to read this that relates to what I'm saying.
Grace has a mitochondrial disorder her body cannot handle the heat we live in Dallas Texas and its hot.
That puts us at home for what seems like forever.When the temp. is down the pollen is up,its a constant battle.Its not fair to any of us especially Grace ,shes always at home.

I look back at what I've wrote and wonder to myself  how can I complain about missing out on food I'm about 230 lbs and haven't missed out on many meals , Grace is tube feed and getting only liquids through a tube,sounds kinda selfish doesn't it.
Maybe ill start juicing fruits and vegetable and go on a liquid diet as well.

Grace is getting so big shes about 54 pounds, and those are heavy pounds.I'm gonna need a gym membership just to continue to lift her,look this is serious, she has to be lifted a lot: in bed,out of bed,in her chair ,out of her chair,in her bath seat and out as well.on the floor to play and right back up again.
We did have a track system installed from her bed to the bath tub or from her bed to her chair but the lift seat is more like a bag, looks like your lifting bag of produce at the grocery store scale to see how much they weigh, I really don't see it being that comfortable,but as she gets bigger well have to make it as comfortable for her a possible.

My wife and I have made a difficult decision and have decided that one of use either her or I will always be with grace at all times let me explain why,

We rarely got a babysitter ,the only people we would leave Grace with was Jill's mother or mine.
It was opening day of the horse races in Grand Prairie the track was probably 40 miles away , we had some friends with us ,another couple that we hung out with often at our house.
Grace had had a few seizures, not real severe ones ,just small twitches ,we really weren't convinced that they were even seizures .
We were about two races in when my mom called ,Grace is having a seizure and shes not breathing my mom has called 911 and the paramedics are there.
Now this is without a doubt the worst call a parent could get!!! We literally run as fast as we can to the car ,we drove 100 miles per hour at least, flashing our lights to get cars out of are way , we finally make it home, Grace is okay it was the worst seizure shes ever had at this point.
Afterwards we look back and realize a few things:1 We could have wrecked and killed both of us ,then were would Grace be? 2  When Grace has a critical moment, be it a seizure or whatever ,if shes ever scared mom or dad has to be there to hold her hand and talk her, tell her everything will be okay let her know we love her and we are there.
Look her Grand parents love her, but mom or dad will always be there.

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