Tuesday, April 28, 2015

Relentlessly cheerful? Not even remotely

C on her twentieth birthday - yesterday
Today was C.'s birthday. I spent a chunk of it fighting for her next batch of cannabis. The manager of the cannabis distributor's office is an unsavory, offensive character who's always reprimanding me and the Hubby.

The upshot is that we'll have to drive yet again for two hours tomorrow to collect the rest of this month's supply. The next delivery to our parts won't be until May 6th and our last bottle is nearly empty.

But after reading this father's plea (via Elizabeth Aquino's blog), my thankfulness returned. There are few countries where medicinal cannabis is as freely and affordably accessible (we pay about $100 per month) as it is here.

But I stray from the bleaker aspects of C.'s life and, of course, I don't want to become "relentlessly cheerful". (Just heard that phrase last night from Susan Sarandon in The Calling and loved it.)

I wasted an hour last week at a parents' gathering organized by two social work students. They are compiling an advice brochure for parents at C.'s school, and gathered a handful of us to brainstorm about its contents.

The idea appealed to me. It's been years since I've shared with  parents of children with disabilities - excluding my virtual encounters, that is.

It soon became apparent, however, that I'm on a different page than the others. Here I was, champing at the bit to air my old gripes: the therapies are too short, too few and too far between, the aides excel only in laziness and incompetence, the teachers are frequently absent from the classrooms, etc.

The other five parents were heated up about things that aren't even in my stratosphere: getting the maximum overnight care for their child (they exchanged summer camp details); lamenting the closure of the "weekend- at-school" service that was once offered for a fee; tracking down all of the equipment subsidies available from the government.

I don't mean to belittle their concerns. But there was no mention whatsoever of the issues that keep me in a perpetual state of seething. I'm fearful of losing a grip on my ire and inviting criticism, repercussions and other such delights. So I didn't even open my mouth.

Here (above) is a quick birthday sketch I did of C. and her dancing braid. I have to keep reminding myself that she's twenty now. Somehow it doesn't sink in.


Elizabeth said...

Happy birthday to your C. May the rest of her days be filled with peace, health, happiness and NO SEIZURES!

The Sound of the Silent said...

Thanks for the good wishes, Elizabeth. Amen!