Tag

diagnosis

Williams Syndrome

#WSHappywalk The Happiest Twitter Party Around

mommydo.com | #WSHappyWalk Twitter Party for Williams Syndrome

Yes, I said Happy Party. And yes, #WSHappyWalk is about a rare syndrome called Williams Syndrome. A rare syndrome you’ve likely never heard of, unless you’ve ever spent any time in a room with me, and then you’ve probably heard more than you care to about it. At some point in that conversation you probably thought, “wow, I’m glad that’s not me.” And you likely had to stop yourself from making the pity face. And I get it. Having a child with a rare syndrome that comes with the potential for countless medical challenges – cardio, kidney, gastro, hearing, sight and…

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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: 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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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: Genes or Just Because?

So there’s this problem we’re having. It’s kind of like when a baby isn’t sleeping through the night… except that by ‘not sleeping through the night’ I mean “baby won’t close her eyes for any reason, like not even to blink between 11pm and 2,3,4,5 am”. The time on the clock is variable but the effect is the same. We live in a zombie like state. We’re 4 weeks from one year of not getting any freakin’ sleep. We have devised a system whereby one parent stays on the main floor with baby and weathers the sleepless storm of tears,…

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Here, of all places, watch your mouth.

That’s what I felt to today while at developmental play group. Every week Obi and I participate in a play group that integrates typical kids with those who are experiencing developmental delays. Some are preemies who are just a little behind. Others, like Obi have a diagnosis. And the rest are just typical kids who come to take advantage of the program which includes free play, social snack time, gym time and music all in one fab morning a week. The group takes place in a specially designed room for the 0-2 set in a building that houses an integrated…

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Williams Syndrome Wednesday: Learning to Fly

I find this new role as a ‘special needs’ parent is quite overwhelming at times. Emotions aside, the logistics are complicated. There are appointments to schedule, keep track of and attend, therapies to practice, milestones to work on. There are new tactics to try to overcome issues (like feeding, for us). Then the emotions creep back in. Once all the other stuff is ticked off for the day there are things to worry about. Things to fret over. Things to be mad about. Things to feel like you did poorly today. There are things I didn’t do because I just…

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Williams Syndrome Wednesday – As Long As She’s Healthy

I overheard someone talking to a pregnant woman the other day and realized something. I have a little confession to make. I’m carrying around a little guilt. And it’s probably nothing, but it’s weighing on my mind. I heard the expectant woman say “the phrase.” I’m willing to bet every pregnant person has said it at some time or another. I said it.  I said “We just want a healthy baby.” And, “I don’t care what we get, as long as it’s healthy”. We all say it – but we don’t really think things will turn out any other way….

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Williams Syndrome Wednesday: Finding ‘our people’

Mommy groups filled with typical mommies caring for typical babies can feel very isolating. I’ve learned when you’re parenting a child with a developmental delay caused by a genetic issue, it’s really hard to relate. In addition to the day-to-day feeling that you can’t keep up with the conversations about what’s happening with the babies that one-by-one pass yours by, there’s the uncertain future that makes you, and others, uncomfortable. For instance, you often hear, I’m letting my baby XXX (co-sleep, have a pacifier, potty-train when ready, skip tummy time) because no one every goes to university (sleeping in their…

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