Tag

williams syndrome

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

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…

Continue reading...
Related posts
I put my kids before my heart and thought I was going to die
May 13, 2018
With a child with an intellectual disability, money matters.
April 13, 2018
Lessons for life prepare kids for a better world
February 16, 2018
Parenting, special needs parenting, Williams Syndrome

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…

Continue reading...
Related posts
With a child with an intellectual disability, money matters.
April 13, 2018
Lessons for life prepare kids for a better world
February 16, 2018
Inclusion in education teaches lessons for life
November 14, 2017
Parenting, special needs parenting, Williams Syndrome

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…

Continue reading...
Related posts
With a child with an intellectual disability, money matters.
April 13, 2018
Lessons for life prepare kids for a better world
February 16, 2018
Inclusion in education teaches lessons for life
November 14, 2017
Parenting, special needs parenting, Williams Syndrome

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…

Continue reading...
Related posts
With a child with an intellectual disability, money matters.
April 13, 2018
Lessons for life prepare kids for a better world
February 16, 2018
Inclusion in education teaches lessons for life
November 14, 2017
Parenting, special needs parenting, Williams Syndrome

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…

Continue reading...
Related posts
I put my kids before my heart and thought I was going to die
May 13, 2018
With a child with an intellectual disability, money matters.
April 13, 2018
Lessons for life prepare kids for a better world
February 16, 2018
preemie, special needs parenting, Williams Syndrome

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…

Continue reading...
Related posts
With a child with an intellectual disability, money matters.
April 13, 2018
Lessons for life prepare kids for a better world
February 16, 2018
Inclusion in education teaches lessons for life
November 14, 2017
Williams Syndrome

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…

Continue reading...
Related posts
With a child with an intellectual disability, money matters.
April 13, 2018
Lessons for life prepare kids for a better world
February 16, 2018
Inclusion in education teaches lessons for life
November 14, 2017
Becoming a Parent, Holidays, Parenting, preemie, special needs parenting, Williams Syndrome

Williams Syndrome Wednesday: The Joy Edition

I wrote an entirely different post. But when I read it, it was well… sad. You see, it was this time last year that things started to go south fast in my pregnancy. Warning signs lead to tests lead to hospital bed rest lead to more failed tests lead to worry about baby’s safety lead to emergency c-section lead to Christmas, New Year’s, my birthday in the NICU lead to home on RSV season house arrest lead to a laser focus on Obi’s delays lead to tests lead to diagnosis lead to more tests, therapies, adjusting to the new normal….

Continue reading...
Related posts
I put my kids before my heart and thought I was going to die
May 13, 2018
With a child with an intellectual disability, money matters.
April 13, 2018
Lessons for life prepare kids for a better world
February 16, 2018
Parenting, special needs parenting, That's Life, Williams Syndrome

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,…

Continue reading...
Related posts
I put my kids before my heart and thought I was going to die
May 13, 2018
With a child with an intellectual disability, money matters.
April 13, 2018
Lessons for life prepare kids for a better world
February 16, 2018
Angry Rants, Parenting, special needs parenting, Williams Syndrome

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…

Continue reading...
Related posts
With a child with an intellectual disability, money matters.
April 13, 2018
Lessons for life prepare kids for a better world
February 16, 2018
Inclusion in education teaches lessons for life
November 14, 2017