Wednesday, June 27, 2012

new kind of [tired]

The kids have been going to Bible School.  They are enjoying it and I am enjoying the 2 hours of freedom in the evenings. 
Scratch that.
I still have Mabel.  Who is still crying alot.  And I don't think the new meds are helping, in fact the seizures seem worse.
So I'm enjoying the idea of freedom for 2 hours each night.
If you were to spend any time around us at all you would quickly see that Mabel needs constant movement for stiumation purposes.  So someone is always walking her, rocking her, pushing her, swinging her, etc.  This is getting a little extreme for me. 
It had gotten to be over the top a few months back but now it is completely out of hand.  I'm sure just to watch us manipulate her is exhausting for those around us. 

For instance, if we are eating in a resteraunt (a huge joke to begin with), I have to make sure i"m sitting at the edge of a table so that I can push her in her makeshift wheelchair (which is really just an old infant carseat sat on top of a Target base.  She's far too big for it and it looks ridiculous.  It's the closest thing we've got folks so stop staring already) the entire time we're eating. 
It takes talent I can tell ya.

However, eating at a resteraunt is probably coming to an end when Mabel is involed.  Last night we tried to eat at Chilis but after waiting an hour for soup and salad (and then not having to pay for our meals-score)...Mabel had a complete and total meltdown. 
Seizing, and screaming with no vision and lots of people looking.
Oh and one very hot mama, sweating and on the verge of tears.
It was NOT pretty.
I had my very own meltdown today too.
You guessed it-in the grocery store. 
Ever since Mabel and I entered into this special needs/grieving combo, I have not been able to manage the store alone. 
I get anxiety even thinking about it.
People stare and I feel like they pity me.  I feel like I'm a zombie visiting the land of the living, I hate spending money, I used to cook and now I don't cook which leads me into feelings of guilt and shame and then trying to justify it all and round and round and round.
And then I spot someone who I just know is going to ask how things are going and I inevitably lose it...crying all the way home.
So I had a good breakdown today which felt nice because I am so exhausted. 
I mean, if you could see me you would say, "Wow.  You're tired."
And I would nod pitifully and think to myself, "they should invent a new word to describe the kind of tired that I am..."

Tonight when the kids were done with VBS, we walked in to see them but right away I knew it was a mistake.  The singing, the lights, the noises and everything unfamiliar was too much for my girl.
And once she started shaking and crying, she couldn't stop.
Finally after a very long time, I brought her home, did meds, and changed her.  When I laid her in her crib and turned the lights off I didn't hear another sound-almost instantly.
She just can't function and it's so incredibly heartbreaking [and oh so overwhelming for me.]
Oh and by the way-she was awake for a total of 8 hours today. 
That's it.
On another note, we are preparing for our second annual 4th of July party and I am thrilled. 
I so enjoy the details of life and that is why, I believe, I feel everything so extraordinarily. 
I feel pain deeply, I feel love quickly, I feel sorrow heavily.
Not everyone is invested in the details of life in such a way that I am and I think I've always known that.  It has always felt like a gift. 
And then I felt the sting of this new life and for the first time it seems that the salty flavor that I used to enjoy is now more bitter than usual.  Just as sensual and yet far more tainted.

Thank you, as always, for all of your words of encouragment during some of these tough times and even tougher posts.  I pour my heart out here because it is the only place that I can truly find an escape from all that is happening around me.  In doing so, I never want to hurt those of you that I love and who love me in return.  I hope that you know that my intention is to grow, evolve and free myself in the process of writing.  It is all that has purpose within me and the one thing that I have been able to cling to during a time in my life when everything else fell to the weight of devestation.  Writing here has been my steady and I will forever be thankful to God for this gift He chose to give me...
this gift of writing.

God revealed something to me last night in the Chilis parking lot as I was pacing with a 2 year old slung over my shoulder.  More on that tomorrow...
For now, goodnight.

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