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 for that I never even thought to reach out to. (That part still makes be feel bad.)

I also realized that the past is the past but there are things, big and small, that need doing now. And if not me, then who?

In order for my child to grow up to be loved and accepted in society, I believe folks need to have some awareness about her syndrome. Someone should really work to raise awareness on her behalf, and on behalf of all individuals with Williams Syndrome.

And if not me, then who?

There are therapies and specialists – so many it makes your head spin, and someone needs to understand how they all work together. And needs to be able to share this info with the next parent who feels lost and alone.

And if not me, then who?

Someone really should make people understand it’s not ok to say ‘retard’, ‘retarded’ or any other derivative of the word.

And if not me, then who?

Someone needs to let other parents of kids special needs know they are not alone.

And if not me, then who?

That’s the reason I took it upon myself to Cheer on Charlie in the Virginia Parks Photo Contest (in which they netted the most votes, by the way). Because they were a nice family who needed a break. Because their story touched my heart. Because someone really needed to drum up some votes so the little family with the cute little girl who goes though a number of the same therapy sessions as Obi is now who really wanted (needed) to get away had a fighting chance to do a ‘normal’ thing.

If not me, then who?

Well, in this case, it turned out to be me, and a whole bunch of you. Which is also nice.

Remember that feeling of being a nice when I come calling for my first Williams Syndrome Awareness Event. Know that we may have the only WS kid there…I don’t know any others in Toronto yet. Given the probability of having a WS child – between 1-7500 to 1-20,000 – statistically only 19-50 will be born in Canada this year.

According to those stats, there are only 2000 or fewer individuals with WS under the age of 20 in the entire country. That makes it rare. Like, really really rare.

But Williams Syndrome being rare doesn’t make it any less of my reality or her reality. It doesn’t mean that people shouldn’t learn more or accept more.

It doesn’t mean she should have to live less of a life because she’s only one of a few that has these 28 less genes than you or me.

She, and all the other little peeps with Williams Syndrome and a host of other little peeps with countless other conditions and syndromes need all of us to make sure that everyone gets to live their lives to their fullest potential.

If not us, then who?

3 Comments

  1. Christy Di Lello

    January 10, 2014 at 9:30 am

    What a beautiful post, Melanie. Your daughter is so lucky to have you; someone who will be a Champion for her. She’s beautiful!

    Reply
  2. dolcedesserts

    January 10, 2014 at 9:32 am

    What a beautiful post, Melanie. Your daughter is beautiful and so lucky to have a Mom like you; someone who will be a Champion for her.

    Reply
  3. multitestingmommy

    January 10, 2014 at 9:51 am

    What a beautiful post! I would like to share this on Multi-Testing Mommy – will pm you about it! Hugs to you – you are an incredible Mom and your daughter is SO lucky to have you!

    Reply

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