June 28, 2015

Things Change. Things Stay the Same.

It's been hard for me to write lately. I'm tired, working full time. And since I work as a writer, even though my daily writing is very different (should the button say "cancel" or "continue?"), that piece of my brain, the piece that makes me need to move my fingers around a keyboard, is tired at the end of the day. And then there are kids to put to bed and dinner to make and chores to finish. And also Orange is the New Black.

But those are all excuses. You know it and I know it. The truth is I haven't wanted to write. It's been too hard. Too hard to find the energy to hash it all out. It's so much easier to block it out for a few minutes with a glass of wine or the latest episode. Or both.

Moe turned 8 in May. And while I've long given up on the comparisons and the what would he be doings, each birthday is one step closer to the rest of his life and all there is to worry about. The Future. About no good options for housing and care and what are we going to do when we aren't here anymore. I woke up in tears one day wondering who will make Moe his favorite foods when I'm gone. It's a silly thing. Except it's not.

And then, because it was June and the end of the school year, we once again began the IEP dance with our school district. They do the assessments. We observe sessions. We craft goals. We talk to some very well meaning people and some not so well meaning and they offer us the same thing they offer us every year. A bundle of services in a classroom that is totally inappropriate with a staff that is woefully unable to handle a kid like Moe.

So we continue to do what we've been doing. And hoping it's the right thing. And not sure how to proceed if it's not.

And along with all of that, the aggression and self-injury has returned. Moe hit his head so hard on the dining room table that his entire forehead swelled up. And then, as the swelling drained, his eyes turned black and blue. With newly missing top teeth (even the most special kids can't escape some of the normalcies of childhood), he looked like a prizefighter. A cute, eight year old boxer in striped pajamas.

We went through the gamut of reasons. Pain? Teeth bothering him? Sick? We took him to the dentist just in case. He was messing with his ears a little. Ear infection? Just unhappy? Needing sensory input? Too much input? And how we want to help him, and how we want to stop being scratched, grabbed, attacked by our boy. And the whining and needing but never knowing what. Food? TV? iPad? Sorry kid, you broke it. Bit and cracked the screen - right through the case.

His doctor increased his medication. We waited a few days to get some baseline data. And then we started. Just a small increase. And things got better. Just like that. It's only been a few days and I'm trying to enjoy how sweet he's been. Affectionate and wanting to sit with me. And he's better at communicating. I'm trying to remember not to flinch when he turns quickly toward me. Trying to enjoy the silence and have a little more patience with Jelly. Trying to push out the fears of what if this dose isn't enough? We can't just increase it forever. Right now it's enough. Breathe.

There were good things this summer too. Jelly turned 6 in April and then finished kindergarten. I took her back east for a week to meet all the cousins. She got to run and play and not have every day determined by Moe's mood or needs. It was important for me too. I have good cousins and aunts and uncles I don't get to see very often.

This week starts the next chapter for us. After a few months off to take care of Moe, Jeff goes back to work tomorrow. That was a big deal I haven't talked about here. Maybe another time. Our new nanny has her first solo week with Moe. She survived a rough first week, but I hope next week will be better. Jelly has one more week of camp before she's off for the summer. And I'll keep on working, and writing when I can.

January 20, 2015

If I Fall, If I Die

Belief

I used to believe that everything would be okay.
That there was nothing that couldn't be fixed by an apology
Or a Band-aid
Or a hug.

I used to believe that things would always be as they were.
That achievement and love and health were more than just luck.
That I would be happy and surrounded
Forever.

I used to believe that tragedy only happened to other people.
Until one day there was a seizure. And cancer.
But still he was okay.
But not forever.

I used to believe that a baby would make things whole again.
A beautiful child with bright blue eyes and a happy smile.
He was perfect.
But now he cannot speak.

I used to believe in science and medicine.
That whatever could be diagnosed could be cured.
I used to believe that "what if" was only pointless worrying.
But now

I know better.



This poem was inspired by the novel If I Fall, If I Die by Michael Christie. The book is a coming of age tale of a boy who, because of his mother's agoraphobia, spends his childhood inside his house. Join From Left to Write on January 22 as we discuss If I Fall, If I Die. As a member, I received a copy of the book for review purposes. 

LinkWithin

Related Posts with Thumbnails