Rett Meet Up

We had an amazing opportunity a couple weeks ago to meet several other girls and their families that have Rett Syndrome. When I was first invited to this, I was really unsure about whether or not I wanted to go. I know that might sound strange but hear me out. Before this, we had never met anyone else with Rett Syndrome. I wanted to, but I was scared. I was scared about what I would feel. Plus, meeting a group of strangers for a social activity is well beyond my comfort zone. But we did it.

I can honestly say that I think I felt every single emotion in the couple hours we spent with these amazing girls and their families. Everyone else had met before and so I felt a bit like an outsider (but Mark was quick to remind me that everyone has a first time – this time was mine – he’s so good for me). We ended up meeting five other girls and their families. It was interesting and emotional just to observe. Observe the girls. Observe how they interacted with their families. All of it.

It seemed impossible not to compare. I told one of the moms this, and she said that it was this way for everyone. Everyone does it because it’s one of the rare times when they are around their “peers”. I won’t go into specifics, but it was hard. It was emotional. Lydia was the youngest, most of the girls were five or six. Their was a range of abilities. One could walk. Many had speech assisting devices. Lots of different things. And let me just say, we were quite the crew with six little girls in wheelchairs!

Also, I just want to give a shout out to our amazing children, especially Sarah. Sarah was so willing to spend the morning here before heading to her birthday activity at the museum. They were all incredibly patient (we were not a fast moving group!) as we slowly made our way around. They were so sweet and loved seeing other girls “just like Lydie”. The best part for them was definitely the animal hospital. We go there every time we come to the zoo but there have never been any animal “patients”. But today they were doing a procedure on a white-spotted bamboo shark. My kids were TOTALLY engaged in what was going on! Such a neat experience for my animal loving kiddos.

There were two moments though that I want to remember that were really positive. The first, is one of the moms I learned happened to be a member of our church. This was such a comforting thing for me. It was so easy to fall into conversation and talk about things from our shared perspective. I am incredibly grateful for that tender mercy.

The other moment was when one of the sweet girls started to cough and ended up vomiting on herself. It was incredible to watch these women support one another. I leaned over to pick up the mom’s phone and food that she had dropped when she began helping her daughter, and in that moment when I got back up, one mom had wipes, one mom had a bag for the soiled clothing, etc. For that moment, that mom didn’t have to feel alone. Everyone knew what she needed because we had all been there so many times before. No one had to ask how they could help, they just knew. And it was a really sweet thing to see.

Overall, it was a really positive experience. Everyone was shocked when I told them we hadn’t ever met someone before that day, just because it was a lot to take in (so many at once). But it was comforting to know that there are others like us, trying their best to support their angel girls. I had this moment, when I was just watching the girls, and looking forward to the day when their bodies will be perfect and the special connection they will have with one another.

Also, in case you are looking for a laugh, you should watch six Rett moms trying to get their girls to look up at the same time for a picture. Life is good.