Williams Syndrome Wednesday: The Talk

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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 had been in the house in the donation pile that he WAS NOT going to let go to another family. So bringing him on the walk seemed like a perfectly good idea.

Until he asked why?

“Why do we need to do an auction for Alma? Why can’t she ask for donations? What’s so special about Alma?”

And there it was. He knows there’s something about Alma.

He look up at me with those big old eyes and I didn’t quite know what to say. I got all welled up and took a deep breath and explained that when Alma was being created, all the pieces didn’t go quite in the right spots, like when you build a Lego set and miss a few pieces.

So she has a little trouble doing some of the things that other kids find really easy, like walking and talking, but otherwise, she’s just like everyone else.

Then he asked if that’s why she needs so many doctor’s appointments – something else I didn’t realize he’d noted – and I said “yes”.

And I had a little cry that I blamed on the wind. My heart broke over the need to have this conversation at all, and because there would be so many like it in the coming years. And that many of them would be far more complicated than this one.

The boy didn’t notice. He simply said “Oh, then I guess we’d better get a lot of donations so we can really help her out.” And then we kept walking and he jumped and skipped along.

I’ve learned that your heart breaks over and over again, at unexpected moments and in unexpected ways.

But when it heals, it’s a little bigger and a little stronger.

In the wake of every heartbreak there’s a little more room for courage and a little more room for determination and a little more room for love.

2 Comments

  1. MultiTestingMom

    April 23, 2015 at 9:15 am

    What a sweet son you have! LOVE your new blog look, btw.

    Reply
  2. juliesteel11

    April 23, 2015 at 3:56 pm

    My oldest hasn’t really noticed yet that her sister isn’t typical. She knows Penelope has a lot of doctor’s appointments, and she takes that in stride, and she knows that her sister has a feeding tube, but to her, it’s all just normal. I am dreading the day when she realizes that her sister is different from other kids and we have to talk about it. I hope I do as good a job as you did.

    Reply

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