Thursday, June 4, 2009

What makes my son 'enough'?

Earlier I blogged about the concept of The Enough House – and how it can help parents of children with disabilities let go of a fix-it mentality to intervention and instead feel richly blessed by who their children are, as they are.

I wanted to write about the things that make my son Ben ‘enough’ – which is another way of saying whole – in spite of his many disabilities.

He is enough when he surprises me by signing "happy Mom" on Mother's Day, and we both know what he’s trying to say.

He is enough when I type on the computer "If you could be anyone in the world, who would you be?," and he types back "Ben."

Or when he can't resist picking a dead dandelion and blowing the seeds to make a wish. Sometimes he can't blow hard enough to dislodge the seeds so he has to shake the flower in the wind. I wonder what he's wishing for.

Or when he stops on a busy street to acknowledge the elderly homeless man, sitting on concrete hooked up to an oxygen machine, and waves his "hello." It's just before Christmas and everyone's out doing last-minute shopping, but no one else allows the man to enter their vision.

Or when he arranges his many Star Wars and other characters in a complicated story montage on the dining-room windowsill, mapping intricate battles and dangerous escapes.

Or when he looks into my eyes – in silence – and we see each other. For someone who used to find the absence of sound awkward, and race to fill it with words, my son has taught me a lot.

Or when he has a giggling fit watching Tin Tin and his dog Snowy, perhaps imagining that he’s the one climbing the mountain or flying the plane.

Or when he walks away with the nurse to the operating room – knowing what it's all about – without looking back. When he was young, he’d carry a favourite object, like his butterfly net or fireman’s hat.

Or when he waits by the window on his birthday, signing "friends, where?"

Or when Halloween is still his favourite holiday – at age 15.

Or when he places an open book across his face as part of his nightly ritual.

Or when he finally sleeps and his extravagantly long eyelashes flicker over a dream. He floats. And I assume there’s no physical pain there, no anxiety about not being able to speak, no frustration that his hands won’t do what he wants, no feeling of being different. In his dreams, I hope everything is effortless.

Or when I feel his weight sink into me, and his body’s warmth is enough to make me happy.

Or when I can’t imagine one second of a world without Ben.

14 comments:

This was so beautifully written, and from the heart. There is so much that we can learn from this. Why do we assume that the way we communicate or express ourselves is the best. Isn't it us who is "stressed" all the time! Good for Ben he sound like an amazing teen! and thank god he has an amazing mom who recognizes it:)

I love this post. You've put into words my own philosophy that my son is who he is - and I struggle with putting him into the box of 'average' in order for him to be included and to fit in.

Bravo.

Thank you Michelle and Suz -- I haven't figured out how to respond to individual comments. I would love to hear more about the children you work with Michelle -- and I would love to hear about your son Suz. Let me know if you have ideas for the blog. Cheers, Louise

Very nicely written. I received your e-mail link to your blog yesterday and have enjoyed reading it this morning. My son is an inpatient at Bloorview for the second time right now, so I have seen you around a lot and recognized you from BLOOM, which I always enjoy reading.
Keep up the great work in the magazine and on your blog! I'll see you around.
Lloyd

I am the mother of a child with cerebral palsy. Sometimes I hear people saying "ohh poor girl ... poor mother" or something like that ... and I think ... These people have no idea how much fun we have, how much we laugh and how treasured the moments in our family are. Yes our backs hurt, yes we could use more sleep, more alone time, more bubble baths, more time for shopping and for coffee with friends, for more days off work and more drive through - ready to eat food ... less doctor appointments, less meds, less after hour clinics, less drool, less laundry, less time putting on AFOs, walker, standers, wheelchairs, communication aids etc etc etc ... but ... isn't it great that it all makes sense to our family ... and that we live with it and still have a blast celebrating the little big things ...

Filipa

Coming over from Finnian's Journey. This is absolutely beautiful and I'll be linking here too if that is okay. Check out our blog for our daughter, Bridget, if you have a chance: www.bridgets-light.blogspot.com

Thank you Lloyd, Filipa and Lisa!

Lisa, I will be putting a link to Bridget's Light on our blog roll.

I've taken a quick look and it's a beautiful site I will enjoy exploring further.

Thanks all for writing! Louise

This is Joyce. Beautiful!! I've learned over the years that it can be so hard for some parents to get to this place though. I got here from Lisa at Finnian's Journey too. I love what you are doing here.

I love a boy who will love the homeless. I don't even know your Ben and I'm thankful for him!

Beautiful. I'm moved to tears. I especially love the comment about "seeing" each other without words. I found you from Lisa too. Here is our blog: www.trisacharm.blogspot.com. What a beautiful journey we are all on with our children. I feel so blessed.

Hi Joyce -- thank you for visiting!

It took me a long time to find the Enough House.

I love your daughter's blog

http://sarahely8989.blogspot.com/

Hope to hear from you again! Louise

Hi Jennifer -- Before my son was born, I think I used words as a mask, trying to present an image I thought others wanted to see.

The amazing thing about having a child who doesn't speak is that I am no longer afraid of silence. And I know when I look into his eyes, and he looks into mine, we truly see, and accept, each other.

Your son Joaquin is gorgeous and obviously a real character! I look forward to reading more about him and your family. Your piece about your older son asking "Do I have Down Syndrome?" was moving and eyeopening!

Hope you'll visit again! Louise

This is really stunning, Louise.

The paragraph about him stopping to acknowledge the homeless man gave me chills. Thank you for posting this!

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