So, at the end of June we were fortunate enough to be able to attend the annual FSMA conference - this year it was in Minnesota, only a 6ish hour drive for us. We got to hit up the Mall of America while we were there too, and be all tourist-y. Lucy brought home some fun souvenirs, Noah brought home a Darth Vader Legoman keychain, and I brought home a wicked head cold that I am just now recovered from, a week later. Blessedly, Lucy was spared. It was a doozy, and would have put her in the hospital for sure. Between that and birthday prep, I wanted to squeeze in this post!
I have to admit, we didn't really go to the conference for the workshops (though we did hit up a couple.) We went for the camaraderie of being surrounded by 1,000+ people who understood our life, at least on some level. Not all people affected are type 1, like Lucy. Lots of people there were type 2, which is less severe. You had to look out for yourself, because there were powerchairs zooming all over (though I must say, they had some pretty skilled drivers!)
Just what did we do there, then, if we weren't in workshops all day?
We got to make new friends.
And see old ones.
Take lots of group pictures.
And have some first-time experiences.
And Lucy got to try some eyegaze technology! It was her first time, and she immediately established that she was going to use it how she wanted - to make sheep noises. The little part I videoed was the part where she was not cooperating because she wanted her sheep flash card back.
We were surrounded by people we could completely relate to, which was pretty amazing. And Lucy was surrounded by kids just like her, which she seemed to appreciate (when she wasn't sleeping - this girl has a knack for going to sleep at the exact times we want to do something fun!) There was a huge aquarium, dance party, pj party, a carnival, and swimming. All catering to the needs of a kid with SMA. It was fantastic! We got some great tips and tricks from more seasoned parents, and got to share some info with other families - who came from all over the world. We were reminded of how blessed we are to have Dr. Schroth so close by. And we made our trip safely, there and home.
I'm so glad we got to go this year! It's funny, because we met so many people that we haven't met before, but since I talk to almost all of them online, it's like getting together with family... but family that implicitly understands our lives with SMA. It's indescribable. It was amazing.
Now.... on to the birthday countdown!