Today was the first time I've been out with Ellie, where someone knew she had PWS, and said something to me about it. It was someone I haven't seen in a few months, and when she saw me, she got this sad look on her face, and gave me a huge hug, while whispering in my ear "I'm so sorry to hear about all you've been going through, I can't imagine what it must feel like".
Now, in all honesty, I thought she had the wrong person, because she sounded so sad for me. I thought she meant someone had died, or something, and then it clicked. She was talking about Ellie's diagnosis. Oh... right. That. So, I made small talk about it.
But something rattled me to my core about that. Please, please never, EVER feel sorry for us. That's the worst thing you can do. I went into the bathroom, and had a little cry, and pulled myself together.
I am SO happy I have Ellie. I don't like PWS, but it DOES NOT define her, or us, and we DO NOT feel sorry for ourselves. We rejoice in every moment we get with her.
Please, be happy for us, we have the most beautiful, tiny, perfect daughter anyone could ever wish for.
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