Saturday, August 9, 2014

St. Louis

Every two years or so, PRISMS has a conference about Smith-Magenis Syndrome.

This year it was in St. Louis and I got to go. Brian, Finleigh and I flew nearly across the continent and had the privilege of meeting many really great people. And learning some helpful stuff.  And getting my fill of hope.

This was the first time I'd met SMS'ers older than Finleigh and it was good. What wonderful, special people they were, those adult SMS'ers. They looked younger to me than they were. But they were engaging and fun and joked around with us. Conversation flowed easy. I laughed. A lot.

I thought to myself, if Finleigh turns out like that, I will be happy. Of course, they were still disabled. None of them were able to live on their own. And I didn't see their low times, which I know they still have. But still, it was good.

Finleigh did pretty well. We weathered a few lengthy tantrums both in the hotel hallways and in our room. She also dumped her lunch over a couple times, including full glasses of liquid. That was fun. But she also went to the kid care like a champ and had a lot of fun. It made it so that we could sit in the sessions with no worries and actually learn.

Or try to learn, anyways. A couple times, I felt discouraged hearing instruction from the front that was supposed to work. That we had tried and that didn't work.

Crap. Does that mean we have to try it again? Did we do it wrong? What the hell are we supposed to do???

So, part of my take home was frustration. I knew going that there is no magic pill. No magic strategy. But part of me, deep down, had hoped. But there isn't. Nothing with SMS is guaranteed.

I learned so many other things, but I won't bore you with them. Instead, I will just say that I belong to the most beautiful community I could imagine and am proud to be part of it. The parents there? Incredible people. The organizers of the conference (also parents of SMSers)? Warm, inviting, caring. There was a feeling of comfort for me there. Like I truly did belong. We all share a bond. It's not a bond I would wish on anyone, but since we share it? I will hold on tight and cherish it.

Now we are home and I have a list of things to implement. Most of which will wait until fall when our life normalizes again. If I have the energy to do it. But I must. If things are going to get better, then I must at least try.


  1. Very encouraging. I'm glad you were able to spend time with this amazing support group!

  2. I'm really glad you guys went to the conference.

    I really wish there was a magic pill though.