crabby abby

I often tell myself I need to post more often, but sometimes there just aren't words. I lack the words to fit the feelings or circumstances. I feel the tears welling up and then spill out down my cheeks. I know I'm powerless to stop them. If you were to ask what was wrong, I'd truly have nothing to say. It's not that I'm crying for nothing, but those tears are emotions before there are words to describe them. I find the emotions are attached to an event or series of events, but the words often lag behind... sometimes days, but often it's more like weeks or months.

The events of the past month or two (like I said earlier, I don't often live in real time frames). So much crazy happens on a daily basis that a bit of crazy must reoccur for weeks or months before I take notice and flag it as a problem. I flagged the crazy unstable Abby a year ago when we started to consult with a behaviorist, but a year later and a parade of countless professionals with endless meetings and we're still at square one. I can deal with that reality better if there is a plan of some sort. If we're at least trying something I can live with it, but when there's nothing left to do I find myself desperate. I'm angry at other special needs kids who are progressing. I don't even want to connect with other parents because most kids with disabilities are at least moving forward. They can learn something. Abby may learn something, but just as soon as it comes it goes. Her brain seems to be locked up. Whatever skills she learns one day, seems to spit right back out the next day.
She had psychological testing done this year and we saw words like mental retardation...
severe... profound.

I think the significance of this past month was the reality of being with Abby 24-7. We had to stare at the ugly reality for days on end. After only a few days we were spent. I'd exhausted all the tricks in my bag of ticks to no avail. We saw our reality crumbling beneath our feet and we stumbled to remain upright. I wanted to crumble with it all, but held it together as we were among family and friends who hadn't lived the past nine years with us. They hadn't seen what was taking place. Somehow the family was able to overlook our troubles because they hadn't been witness to them. They saw them this time. Our reality was a bucket of cold water on a winter day... confusing and sort of painful to watch.  

It's funny (not really, but for lack of a better word) how they really never saw it until now. I remember drowning in my own tears and wondering why they seemed to not take notice. I couldn't see the snapshot they got. They only saw us when we were in a good enough place to come around. We haven't seen stable, happy Abby more than a day at a time lately. We don't know what we'll get from moment to moment let alone day to day, but we ached to see family so we hesitantly packed up and headed south. We knew somehow they would never see us if we didn't go, so we went. Since we couldn't wait any longer, putting on a shroud of optimism or living in total denial, we took off with our beloved Danielle in hopes that the few things she did like would carry us through. Normally she likes a car ride, new people, getting out of the house, and swimming. The car ride threw her into fits of rage, new people got attacked, getting out and staying in both were painful and swimming was periods of contentment mixed with poo and tears. Naps and bedtime were our only periods of assured peace.  Not fun :(

I've documented food intake, drugged to the edge of "is this okay?", tried recommended discipline, played music, toys, videos, massage (hard and soft), brushing, more and less sensory of every kind I've ever heard; but there is no pattern and nothing to soothe.  Nothing in particular and everything in general can bring out joy or inflicting pain.
I've got nothing left.
I've sat asking for strength for today and then again the next day.
Andy wanders around the house trying to find something he can fix.
The other two try to keep busy without getting in Abby's path. MaryAlice is still foolish enough to come close to Abby and I have to fight anger when she gets her too. The pit in my stomach increases when I hear her up in the morning. I'm beyond thinking there's anything I can do but wait and hope this season passes. It may or may not. She's on another new drug after I swore them off a month ago after nearly a year of trying and dealing with the side effects. I'm jealous of Andy who "gets" to go away to work. I want him to come home to a sanctuary rather than... this... whatever this is. There isn't a definition for this mayhem of instability we keep.

A calm spirit and a left hook
I'm still once again tonight. For this is when I hear Him calming me from within. She's in bed. Happy sounds after wrestling her up the stairs while my exhausted helper sneaks out the door and not wishing to wrestle off a stinky diaper. I Just changed her diaper as she greeted me with the biggest smile in the world, a big sloppy kiss... and a left hook- ouch! I kiss her goodnight and walk away... hmmmm... He never promised an easy road, He just promised he'd be there. He is. I'm calm and ready for another day.

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