East Coast, West Coast, and Worldwide

Thanks to all of you for holding it down. Your comments made me feel a lot better. It takes a village to raise a mom, y’know?

It’s one thing to do what I perceive to be my part, but to know that my efforts are not futile? Whew! Does it ever take some of the weight off of my shoulders to know that you all are out there, sharing what you know with others and making this world a more tolerant place for my little girl and others that share a little something extra.

I love getting messages about how folks have learned something here that they didn’t know before or how they’re changing the words that they use now that they know how hurtful it can be to someone else. And then there’s the story I heard yesterday from a pregnant friend who said that the Geneticist she spoke with could tell that she was close to someone who had a disability based on her consistent use of People First language.

Wow.

Here’s a bit of good news: Yesterday, Playette and I made the road trip to the (not so) local Children’s Hospital so that she could have her neck click evaluated by an Orthopaedic Surgeon. He could see the laxity in her joints, but said that it was nothing to be worried about. I kinda almost believe him. At least he believed me even though he didn’t hear the clicking for himself. When I asked what was causing the noise, he told me that he wasn’t 100% sure and then used the word “articulation” and said it was akin to cracking one’s knuckles. We’ll go back in a year, get some more xrays done, and see how things look. Until then, we can apparently allow her to “develop normally” and not try and restrict her from any behaviors.

More good news: They opened a famous cupcake store near the hospital. Expensive, yes, but I had to try.

Less great news: Playette took the milk I ordered from the cupcake place and promptly dumped it all in her lap. She got to ride home wearing only a diaper and cried the whole way. The long ride took even longer since I got lost somehow. Good times.

Right now, Playette and BD are at her Aqua Therapy evaluation. I’m excited about that. I can’t wait to hear what they propose.

We'll have our annual Parent Support Group potluck this evening, which marks our first anniversary of being a part of the group. I hope to see some of you there!

Before leaving, I want to thank the family member that I spoke with yesterday that is due with a baby girl soon. She went through the possibility of a prenatal diagnosis and, as a result, now has a much better understanding of Ds and the power of “they.” I appreciate her compassion and her strength to stand up for what she believes. Thank you again and congratulations!