Tuesday, May 26, 2009

The Enough House

Last summer, while reading Charles Dickens’ Great Expectations, I was surprised to come across reference to a mansion called Satis House – “which is Greek, or Latin, or Hebrew, or all three…for enough,” said the character Estella.

“Enough House,” replied the protagonist Pip. “That’s a curious name, miss.”

“Yes,” she said, “but it meant more than it said. It meant, when it was given, that whoever had this house, could want nothing else. They must have been easily satisfied in those days, I should think…”

I want to live in the Enough House, I thought, where we are enough, just exactly as we are.

My son Ben was born with a rare genetic disorder and over time we learned he had many disabilities.

He’s 15 years old now, and we’ve spent most of his life trying to get him to do things he simply can’t: to grow, to hear, to speak, to write.

When he was a toddler, and still scooting on the floor while his peers stood up and ran, I remember bargaining with God that if he would just let Ben walk, I would never ask for anything else. At the time, we were struggling to put him through rigorous home physiotherapy exercises twice a day. Ben did eventually walk – albeit slowly and with pain in his knees – but I didn’t keep my end of the bargain.

Of course, it wasn’t enough.

There were years of special diets, a stomach-feeding tube and growth-hormone shots to get him to grow; speech therapy four times a week and trips outside the country to see specialists; and occupational therapy to improve his fine-motor skills. We tried every alternative therapy going. But in the end, none of these things worked. He never acquired speech, he can’t write
functionally and he’s half the size of his peers.

We live in a culture that values constant self-improvement. There’s always something to be worked on, some future state that will be preferable to the one you’re in now: a time when you’ll be happier, smarter, richer or more youthful.

I think that value seeps into the world of children’s rehab, and makes it hard for parents to feel blessed with who their children are, just as they are. We’re so busy “working” on things with our kids, trying to turn every interaction into a therapeutic one – that we can lose sight of their inherent wholeness. I used to long to read a book with Ben just so we could sit together, he in my lap, giggling at the funny parts – and not because it was a way of squeezing out one more word attempt.

But time was ticking, and he wasn’t meeting his milestones.

There’s a push and pull – especially early on – between wanting to accept our children for who they are and wanting to make the disability go away.

No parents want to look back and feel they didn’t do everything possible to promote their child’s development during the preschool years, when the brain is most plastic. And it’s easy to get caught up in the latest “magic bullet” treatment you read about in the media or on the web.

But sometimes, during those gruelling years of intervention, I wish I could have breathed deeply and told myself: “It’s enough. It’s enough that he’s alive, it’s enough that I love him, it’s enough that we have joy together.”

I wish I could have visited the Enough House more often.

Because in the larger scheme of things, enough is all that matters.


That's beautiful, and good advice. Thank you.

as i work with children and their families, i try and will continue to try to always keep this in mind! --liz the PT

It's a great way to think,,, Everybody thinks about the result of his action and wish that the action makes him happy, but he forgets most of the time to enjoy the process while he is making it... Loving perfection is easy but the real love in my eyes is to love without waiting for a result...

I work with EI children & families and also am a mom of a child with needs.
After years of IFSPs, IEPs, etc. we finally let Andy vote on what he wants. No more goals, just fun.
We all breath a lot easier since we aren't worried about failing to achieve something.
Thanks for putting it into words.
Jan, PTassistant

Jan -- thanks so much for your comment. I would love to hear more about Andy!