Well Arts Institute

I have to admit something. I’ve been cheating on my blog! I’ve been getting all my writing kicks from a different place – the Well Arts Institute. http://wellarts.org/about/

They are a nonprofit arts organization that “partners with local organizations to bring professional artists to facilitate playwriting and oral history theatre workshops for people facing physical illness, mental illness, or social trauma.”

It has been one of the most interesting and meanigful experiences of my life.

Currently, we are in the workshop phase. There are six mothers of children with cerebral palsy including myself, and we are writing our experiences, our thoughts, our heartache, our hopes…all the stuff that is so hard to talk about. We are guided by an amazingly kind and patient facilitator. I’ve teared-up at least once and laughed a lot in every session so far. These women are ferocious mothers, deeply in-love with their children. It feels so powerful to be in their presence.

In the next phase, we will turn some of the writings into a play for performance on the stage. Yep, that’s right, a play! I’m not kidding.

Thankfully, it will be actors and not us on stage (ha!). It is a bit nerve-wracking to think of someone performing your stories, but I am very excited. I hope you guys will come see it. Currently performances are scheduled for:

Tuesday, March 17 – evening
Saturday, March 21 – matinee
Wednesday, March 25 – evening
Saturday, March 28 – matinee
Wednesday, April 1 – evening
Saturday, April 4 – matinee

These dates don’t seem to be published anywhere yet so they might be tentative. But do get this on your calendar! All performances will be held at the Milagro Theatre, 525 SE Stark St., Portland. Oh and it is called “FIERCE LOVE.”

We will also be fundraising soon to help pay for the actors and to support the Well Arts Institute and United Cerebral Palsy of Oregon and SW Washington. I’ll keep you posted.

And just to give you a sample…This is written in response to watching a scene from “A Day in the Death of Joe Egg” by Peter Nichols.


Does it ever get better? Does it get better and then worse? I just keep wondering where we are going. When is this going to end? But I guess the end is the end. A handful of knocked over towers could be all the accomplishment there is. I guess it’s the same question we had when we first found out. What will she be able to do?

Maybe it just hasn’t been long enough. It has only been a little over a year. She’s still only a baby really. I just can’t help but wish there were more – more eye contact, more knocked over blocks (any knocked over blocks)…But there are smiles! And that makes me feel relief. Relief though… not triumph. Maybe we’ll get somewhere. It gives me hope. But hope is actually the worst thing. Is puts her forever in front of us, and nearing the impossible. Because she will never be one of those to blow the predictions of the doctors out of the water. I can see it in the way she stares into space. I feel so much guilt over having so little hope. But maybe if it will not get better at least there is rest in being hopeless, in accepting that there is no better place to move towards. Maybe I can enjoy her more like this – occasionally smiling and noticing the world just once and awhile.

Will this ever be ok? I want to banish all forms of measurement in our home – no clickers to count seizures, no medicine teaspoons and syringes, no charts, no clocks, nothing. We’ll see if the cake is cooked by looking and feel how warm it is rather than set it on the wall. We’ll be late for everything if we can even leave our home. We’ll just be- above it all, apart. Timeless, but okay.