how words speak to me

Louise Kinross is the editor of the fabulous blog from Holland Bloorview Kids Rehabilitation in Toronto.   It is called Bloom.    Louise has always been very supportive of me as a writer, and I’ve been interviewed and published in Bloom a few times.  In fact, she published The Invisible Mom, which was picked up by Huffington Post, and from there I was contacted by the editor of the New York Times Motherlode blog last year, who was interested in a query from me.  From that, Far From My Tree was published on Motherlode and printed in the Sunday Times newspaper last December.  Does it get any better than that?  That was pretty awesome, and Louise had a direct hand in that.

Louise is very connected with all that’s going on with kids and disability in the world.  I’ve had the good fortune to meet her, and present with her at meetings and conferences.  I respect her mightily, and see her as a champion for the written word and our secret world as parents of kids with differences here in Canada.

She somehow found Diogo Mainardi, who wrote a book about his son Tito called The Fall.  Louise interviewed him for Bloom, and the transcript results are chock full of wisdom about having a child with a disability.

I often feel so stuck in my thinking:  struggling about Aaron’s lack of friends or on the warpath to make change in the world for future generations, or outraged about injustices, or disappointed by organizations who pay lip service to family volunteers.  You’ll see those themes throughout my blog, along with my pithy attempts to be positive, remember the joy, and stay in the moment.

Diogo’s words suggested a deep acceptance of both his son Tito, and the reality he faces as a boy with cerebral palsy in the world.  The reality of the world is something that I have not yet learned to accept.  I see other parents raging about systems, and people…and I know that I do this too.  However, I also live in fear of becoming a mean and resentful mom, which is what is going to happen if I don’t adopt a more Buddist attitude about the way things actually are.  As my own father likes to say:  What is, is.

I’ve been thinking a lot about Diogo’s blunt words about his son, including:

Obviously, he has no friends.  Everybody likes him and is very tender to him, but he’s 13 now and the 13-year-old boys and girls are not ready to listen to someone who speaks in a slurry way or has difficulty walking from one place to the other and is much slower. This is something that we can’t impose.

That response hit me like a bag of bricks.  He’s right, of course when he says that you can’t force tolerance.

And, about changing the world, he says:
We cannot try to overreach. It’s so frustrating to try to solve every little animosity and instill in other people respect of a disabled child. It’s too big a war. 

Diogo has taken a very smart approach to his book.  He acknowledges that nobody is going to read a book about cerebral palsy (except other parents of children with cerebral palsy).   The Fall connects his son’s story with the great, common stories of the world, and has wide appeal.  As he says, we need to enlarge the subject.  Andrew Solomon did that with his Far from the Tree – while his subject is kids with differences, I know his book has been picked up by parents of typical kids, non-parents…he has wide appeal with his approach of masterful storytelling mixed with research.

My hope for this little blog, and my future publications, is that I’m not just a ‘special needs mom’ – I’m seen as a woman, a wife, a mom of three.  I’m struggling with an emptying nest, having a punk rock drummer for my eldest son, finding sanity in a technology-filled world, living in a city I don’t really like, running my own business, and yes, being the mom of my last remaining child at home, who happens to have Down syndrome.  I also love food, movies, travel and books.  I’m more like you than you might think.  And it is through those connections – that sameness – that we are going to foster understanding and compassion of each other’s lives.

(Thank you, Louise, for this super interview with Diogo Mainardi, for championing fledgling writers, and for always making me think).

 

4 thoughts on “how words speak to me

  1. Louise at BLOOM says:

    Thank you for making my day Sue!

    I came in on Labour Day to do the interview with Diogo — and I was rather grumpy. But then I got completely caught up in our conversation and in the wisdom he has to share and I was rejuvenated. I too loved his frankness about his son’s lack of friends and his decision to focus on the small battles.

    I’m very grateful for the wonderful contributions you’ve made to BLOOM, including our most popular post! Thanks for sharing the word about Diogo’s book.

  2. sue robins says:

    Thank you Louise (enjoying the mutual love fest ;)). I think we all don’t say thank you, or express how much we appreciate each other nearly enough…so this was my chance with you…

  3. tarah2 says:

    I just read a book called George and Sam: Two boys, One family and Autism. I think in the intro, they say that people don’t want to read a book about autism, but it was fascinating and had a lot to say about parenting and compassion in general. This sounds like another one like that — I’ll have to check it out, Sue, thanks.

  4. sue robins says:

    Ah, Tarah2, I have the good fortune to know you in real life and know that you have a compassionate and open heart. Reading your comments, and knowing that if you exist, others might too – really gives me hope…ps: I have Diogo’s book if you’d like to read it. It is a beautiful little book, and fascinating to read – it really isn’t about having cerebral palsy. It is about being a person in this world…and how we are all connected – to the past, and to each other….

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