Wednesday, November 18, 2009


It seems appropriate as I plan for Christmas that my copy of Gifts 2 How People with Down Syndrome Enrich the World arrived yesterday - and I dove right in. It is a little repetitive - which just highlights to me that even though no story is identical - the discoveries we make of ourselves, our world and our children are all very similar. I love the stories I have read so far and will no doubt finish reading the whole things soon. That's ok - I bought my own copy specifically because I knew I'd do that. Devour it, cry and laugh and ponder as I read all the different contributions - and then have it on my growing shelf for books related to disability - in particular DS - so that I could 'dip into it' regularly.

My favourite story so far is The Missing Piece by Beth Duncan - the photo that accompanies it and the opening paragraph - yes Hannah does that exactly. Holds my face either side with her hands tihgt, looks totally focussed into my eyes and says loudly and clearly and sometimes repeatedly, with intensity and love "Mummy". I love it. Those moments are so precious to me. Like Zane in The Road Less Travelled by Danielle C Perry says "When we tell Zane we love him, occassionally he'll say it back just as my other children do. Usually though, he grins and knowingly says, "Yeah". ... It is a beautiful response in its sincerity and simplicity."

I smiled with knowing as I read Mulch by Julia Pewitt Kinder - oh yes I recognised that Doctor - and smiled with compassion as she railed against having a child who didn't fit the medical box - a 'healthy' child with DS. Yes our kids can bamboozle us can't they? Oh and in Making the Best of Us by Cindy Groom harry when she tells of her daughter and soninlaw receiving a second opinion from a pediatric cardiologist who explained to them that "the heart was repairable and that there was no reason the baby couldn't be born ... and live well!" Yes I still love my cp - for a very similar reason. He was the first medico who dared suggest that even if 'twin1' had DS - that we would be fine. {He was wrong of course - we aren't 'fine', we're wonderful - but I still love him.}

I recognised the new shoes of Amy Armstrong in This Walker Doesn't Match my Drapes - the new soft shoe - yes I wear a pair of those! And the love in Angelico brought tears to my eyes. My Dad feels that way I am sure about Hannah. She brings him peace and helps him as he adjusts to life as a 'widower' like nobody else can. That light that Bridget's Mom talks about so evocatively - yes and 'Grah' can see the rainbows in that light too - just like Zane's Mum talks about - "Over the rainbow I wish to see -- lots of colours". Han helps us recognise those flashes of colour too.

The stories by siblings and friends - I think of Kit as I read each one. One day he will tell his story about his twin sister who happens to have DS. I am sure it will be a remarkable story reflecting their remarkable and unique relationship. I hope it is. Amy Flege's story of her cousin Shelly made me smile too - when her daughter was born with DS "We knew she was already perfect. We knew because of Shelly." I wish I'd known too - I wish I'd had a Shelly to know and love. Instead as Jennifer Marie Seiger says [and not only in relation to the way we talk about people with intellectual disabilities (the r word) because language of course conveys our feelings and undertandings (or lack thereof)about intellectual disability]. "We are raising awareness. We are on the path of acceptance. We are passing it on." It is a gift. A most wonderful gift. That gift is almost as good as the other great gift of children like Hannah and Emily - as Beth Duncan writes in The Missing Piece "I'm glad that Emily came into my life because, among other reasons, she is gradually showing me who I am." I agree wholeheartedly. Can't wait to keep reading!
Here she is - definitely a gift - just like her brother.


Sharon said...

Oh wow, sounds great. Now I want a copy too! :-)

Sasha said...

I have my copy too, but just can't snag anytime relaxing time to read it. I will live through you for now. I loved Gifts 1.

Dovic said...

Oh deary me. Your post put a lump in my throat Shelley. How would I go reading the whole book?? By the way, you're bloody well well read aren't you :)