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Williams Syndrome

special needs parenting, Williams Syndrome

Williams Syndrome Wednesday: The other shoe dropped

Have you seen this shoe? Lost Wednesday between Heath St. and Yonge St and Bloor Station – east-west plaform. Travelled south on Yonge to St. Clair and then south on the Yonge line to Bloor, tranferring to the Danforth line. I have seen the shoe and the jaw dropping bill that came with it. It is one of two lovely shoes, one of which has taken a vacation from my daughter’s foot and landed somewhere in our fair city. She’s a kids, kid’s lose shoes, I get it. On a philosophical level I totally get it. But for me it…

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Williams Syndrome Wednesday: Why research if there’s no cure?

I’m in the midst of doing some research focused fundraising. There have been a number of people who’ve asked me if there’s a cure for Williams Syndrome, or if there will ever be. For Alma, there will be no cure. The chain of 28 genes that is missing from chromosome 7 in her body can’t be replaced or repaired. It is a part of how every system in her body functions. One of the genes missing, the elastin gene, means the various tissues in her body don’t resume their shape after stretching or contracting. If you were to suddenly replace…

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Williams Syndrome Wednesday: A good day ain’t got no rain

A mother raising a child with Williams syndrome, holding her baby in the nicu

Raising a child with Williams syndrome, I’ve learned a lot. Like that Paul Simon knows some things about some things. “She said a good day ain’t got no rain. She said a bad day is when I lie in bed and I think of things that might have been.” So one of my amazing sponsors gave some lovely kids books to The Auction for Alma. And one is called “Someday my Love” and it’s the story of a new mom and all the hopes and dreams she has for this baby girl. Except she missed a few: Like “Someday my…

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Williams Syndrome Wednesday: The Talk

On this journey I’ve learned a few things. Ok, maybe a great number of things. But one of the most important things I’ve learned is that there are LOTS of pretty good days (even great days)…being a special needs parent isn’t all doom and gloom. But then, out of nowhere, when you least expect it, your heart breaks all over again. This past weekend, the boy and I were out visiting local businesses looking for donations for The Auction for Alma. He remembers the auction from last year – we jumped into the bidding to secure the Lego set that…

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Williams Syndrome Wednesday: We become the parents our children need us to be

I’ve recently been told I’ve really taken to this whole ‘advocacy thing’. Which I suppose is true, but doesn’t really say all that much about me. Other than that I am a parent. And that’s what parents do. I’m quite certain that if you asked all the parents sitting at any given hockey rink at 6 am on any given Saturday, many wouldn’t have pictured themselves freezing their butts off 2-3 mornings a week. Ditto for the dad’s sitting at ballet recitals talking about turnout, mom’s debating the relative strengths and weaknesses of the Ninja who make up Sensei Wu’s…

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Obi’s Film Debut

My friend, the talented director Rob Quartly, was pretty interested in Alma’s story, the lore around Williams Syndrome and her super cute smile. So he created this lovely little film about our family to help spread awareness of Williams Syndrome. Have a look and share with friends. One day, no will have to ask me to explain what Williams Syndrome is. Through films like this, I’ll have already told them. Enjoy! [vimeo 108925607 w=500 h=281] melanie

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Williams Syndrome Wednesday on Thursday: Using my power for good

All the fundraising and workshop planning is going great. The auction closes tonight!!! ** But real life continues. Obi currently has a team of 14 doctors, specialists and therapists and this we added two more, which stung more than I thought it would… And her name came up for a preschool spot today. This specialized pre-school enrolls special needs and some ‘community’ kids (not special needs) and we’re going to check it out in 2 weeks to decide if we want to enroll her or stay on the wait list for another year. Again, another moment of really realizing my…

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Williams Syndrome Wednesday: A shout Out to the Villiage

If you know me at all, you know that I am currently hounding people for silent auction donations and silent auction bids. I am a pain in the ASS. But I’m also committed to raising awareness for little Obi and that commitment requires funds. In this particular case, funds to help cover some of the costs for a 1-day educational day at Sick Kids in Toronto for WS families. A noble effort and a huge ton of work… but I see it like this: When you’re new to the neighbourhood – or in this case, a rare genetic syndrome –…

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Williams Syndrome Wednesday: Hand Claps

The little miss has started clapping her hands, initiating peek-a-boo and ‘saying’ a couple of words. We think she says “hi”, “Daddy” and “done”. Still not sure if they are intentional words or just sounds that kind of sound like words but regardless, it’s progress. It seems like Obi’s development plateaus then leaps forward – all three of the above are a big, big deal. It’s hard to find the time amidst all the management and logistics and worry and fear to celebrate. But these week, we make time. The little miss claps to show pleasure, plays a game to…

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Parenting, special needs parenting, Williams Syndrome

Williams Syndrome Wednesday Really Late: Little Heartbreaks

I’ve had 2 rather unexpected moments – both really teary and both out of the blue. Sometimes I forget that I live this new and unexpected life. It’s becoming a normal life. Doesn’t everyone else walk in the door and find they’re forgotten an OT appointment and find the therapist halfway through walking lessons with their babe and her caregiver? Isn’t everyone up late scouring the internet for bouncy chairs for developmentally delayed sensory seekers who like you bounce? Did you not take a moment today to wonder if integrated or specialized SpecEd would better suit your child? I did…

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