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Williams Syndrome

Parenting, special needs parenting, Williams Syndrome, williams syndrome wednesday

Williams Syndrome Wednesday: Permission to Let It Be

Sometimes it’s nice to hear someone say “Things are ok as they are.” This week’s dose of chillax came from the special feeding clinic that baby Obi now attends. Feeding has been a huge struggle right from day one. We finally got her eating pureed baby food at about a year. We’ve been trying to increase textures but not having any luck. And do you know what the experts said? Let her eat purees. Thicken them slowly over months and months. Stop pushing her to move ahead faster than she can. It’s ok. You know, it’s not ok for me…

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Williams Syndrome Wednesday: 1 in 20,000 is the lonliest number

Yeah, I know, I’ve missed a few Wednesdays. I totally had ‘that thing’ happen. The one where you have something on your mind and you really want to say it – but it’s such a big friggin’ downer for you and everyone else that you don’t say it. And then, as it’s all you want to say, you can’t think of anything else to say, so you just say nothing. Yep. I’ve said nothing these past weeks because I don’t want to actually commit these words to print “it’s just not the same”. There, it’s out there now. I have…

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Williams Syndrome Wednesday: Alikes

Have you given thought to the change in how the people see ability? When I was growing up, people who had differences, physical and developmental were kept away. They went through school in different classes. They weren’t playing sports at the same venues or in the same dance classes I took. Every one who was with me was like me, and everyone who was not like me was somewhere else. This magnified the all the ways we were different. When I learned about Obi’s condition and every day since I’ve fretted about all the ways she’ll be different. From her…

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Williams Syndrome Wednesday: 1 Year Adjusted

Dear Obi, One year ago today was your due date. You were born almost 6 weeks early, and despite what everyone said at the time, you haven’t ‘all but caught up’ by your Adjusted Birthday. You’ve checked all the little boxes for 8 month milestones and have, just in the last couple of days, finally checked off the first ones for 9 months. You’ve now clapped and banged objects together. You reached your hands up to be picked up this week too. Although they are not on the list, last week you gave me my first official hug, and today…

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Williams Syndrome Wednesday: Some things about having a baby with a rare genentic syndrome…

…that you maybe haven’t given much thought about. This past week we had the 1 year anniversary of Obi’s homecoming after 25 days in the NICU. We had no idea the journey that lay ahead. Realizing that Obi was not coming along like a typical baby, identifying possible causes and bringing them to her doc’s attention, wading through genetic testing, learning her diagnosis and diving into the steep learning that comes with a complex syndrome like Williams – what a year! I was inspired by this post today on Cheering on Charlie to share some of the thoughts and experiences…

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Williams Syndrome Wednesday: We get it wrong too

I have a confession to make. I seem to have a large foot stuffed in my mouth over and over again. I keep saying the wrong thing -particularly to one parent who has an older boy with significant physical disabilities and a second, a typical child Obi’s age. See, even that, is that the right way to say that? The most recent foot-in-mouth incident arose when I was piping up in a conversation between said woman, another woman with a boy about Obi’s age who has similar developmental delays and myself. The woman with the boy close to Obi’s age…

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Gabrielle takes Williams Syndrome to the Big Screen

It’s finally being released across the country! Gabrielle, Canada’s Oscar submission for Best Foreign Film opens in Toronto at the Tiff Lightbox and in Ottawa today, and in Vancouver and Winnipeg on the 24th. Back in September I had the pleasure of seeing Gabrielle at the Toronto International Film Festival. Directed by Louise Archambault, the film stars Gabrielle Marion-Rivard, a Quebec actress making her film debut who also happens to have Williams Syndrome. The cast was present for the screening and I had the pleasure of speaking very briefly to Gabrielle and her Mom after the Q&A was finished. She…

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Williams Syndrome Wednesday: Something Nice

Something nice happened when I learned I had a child with Williams Syndrome. I became a nicer person. I became a person who couldn’t afford to be completely self centered (though I am ashamed to say, I found those 40 self-centered years to be pretty fun. And I never really gave any thought to why there was a problem with that). Overnight I came to understand that I would not make it through this process alone – that none of us makes it through this alone. Oh, and that there were people I should have tried harder to be there…

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Williams Syndrome Wednesday: Not Ok Holiday

I took a little blogging holiday over the holidays. There was a lot to process and I couldn’t quite bring myself to form my thoughts and feelings into words. First, I found myself reliving my delivery and NICU experience as we celebrated Obi’s first birthday, only now I was able to apply the Williams Syndrome lens to what happened. This made me feel the need to go back over every painful moment to see if knowing about the WS might somehow change how I felt at the time or the decisions we made. Those were dark days, and reliving them…

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Williams Syndrome Wednesday: My 1 year old has Williams Syndrome

It’s crazy to say it – but Obi will be one on Sunday. We had a party which was well attended…an experience that really drove home my worry that it may not always be this way. There may be years when no one wants to come to her birthday party and that makes be cry a little each time the thought crosses my mind. I certainly took a few minutes to have a pity party of my own. I looked back at the photos of my son’s first birthday party. Where he was developmentally, where I was ‘parentally’… it was…

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