Sunday, November 7, 2010

Nicky and hope

Dear God,
We need to talk.
- Jess

Nicky update:
He's about to start his 4th week at the hospital, 2 hrs away. Lots of driving, and a few overnights. His behaviors went from over 650 to under 10- one day he had only 4. His sarcasm is back, which the staff loves. He's not too verbal, but occasionally he'll say, 'Oh God,' 'Come ON...,' etc. (he doesn't get the religious cursing from me; I can only claim the 'f' word and all its deriviatives.)
However, when we took him out yesterday, his behaviors were up around 25 or so and he hit, kicked, and attacked me. He knocked things over and I couldn't make him stand up. The hospital maintains that they can help him further. He seems happy most of the time- or, at least mellow, and not so anxious. He generally has severe autism and severe anxiety, but if we can get the anxiety under control, you'd see this brilliant, happy child, who skips and sings songs he makes up.

Sometimes I'm okay, happy, perky, and doing the usual. Other times, I'm hysterical, and I honestly don't feel like I can make it anymore. Fortunately, I have lots of support, and I continue with my mantra: this too shall pass. It hurts, and it sucks. I've long since let my dreams go of a 'typical life;' and, in fact, I embrace sort of an alternative, yet amazing life. But this is my 6 year old kid- my kids are glued to me, and I've had a hard time letting even our closets friends to take him. The possibility of him being there for Turkey Day is ...well, we'll make it our day, no matter where we are.

Mama's 'Nitty,' as he calls himself.

...but we did manage to get the kids to the lighthouse in Portland... what a day. WAY too cold, but they wanted to go, and they didn't want to leave.
THIS moment refilled my hope tank, and diminished all the stress...

"I love you, brother... mama doesn't know it yet, but in 5 minutes, you and I are going to slap the shit out of each other in the car... heh."
- Jess


Deborah said...

I know how hard it is for you as I have been and am continuing to go through similar but not the same challenges. Your boys are adorable and you are doing a great job as a mom!

jess said...

Deborah, I'll keep you in my thoughts, and my prayers. xx Thanks for coming by! :D

ArtSparker said...

Hang in there!