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williams syndrome wednesday

special needs parenting, Williams Syndrome

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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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: 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: The Unknown

Control. Surrendered. Expectations. Unrealistic. Certainty. Uncertain. Possible. Yes. Impossible. Yes. Probable. Not likely. Likely. Not realistically. It’s the unknown that makes this journey so challenging. It’s a huge spectrum. There’s no knowing where she’ll sit on it. Though she’s caught up on many milestones, there’s no research that supports this will mean she’ll remain on that curve. She could stall at any time and find herself falling behind again. Will learning sign language help? Maybe. Will OT ward off physical delays? Perhaps a little. Will the early, consistent exposure to solids help prevent food issues? Could be. Or not. There’s…

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Williams Syndrome Wednesday: Sit Up Proud

Little Miss sat unsupported for a short time today…maybe 2 min. After spending time with a Mommy group filled with typical children yesterday and having a little boo-hoo over how hard it is to watch all the kiddies moving so quickly through sitting to making moves towards crawling (or already crawling) and now starting to pull themselves up, to say I was delighted was an understatement. Of course the camera was no where to be found and phone battery was dead, but I’ll snap some pics today if she’s interested in a repeat performance. As I go through this journey…

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Williams Syndrome Wednesday: Heart in my Throat

I did a 5k run this past weekend. I used to run a lot but after hurting my back, I’ve been on a break for about 5 years. I’m one of those few people who actually loves to run. So this summer I laced back up, knowing that running is cheaper than therapy, and a serious help in the butt reduction department. I ramped up my running 13 years ago after my father passed away. Again, using the running is cheaper than therapy approach I put one foot in front of the other for Km after Km, eventually completing a…

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