It has been a weird summer. Not going to Boston is somehow harder than it sounds. There was stability that came from constantly being measured and observed. There was context as we purposefully made sacrifices so that in years to come, Rett Syndrome can be treatable. But that season has drawn to a close and we have returned back to our normal. Don’t get me wrong, I have so much to be grateful for, and I am. The trouble is that our normal just isn’t.
I didn’t see it coming. I was happy to be looking at camps for Chloe instead of flights and hotel rates. As summer has gone on, I’ve tried to not notice, but the grief has been inescapable. It hit me like a ton of bricks when Facebook reminded me it had been a year since we last flew to Boston. I was flooded with the mix of emotions that came from that day. There was uncertainty and vulnerability paired with hope and strength along with deep fatigue, adrenaline and a lot of coffee.
I used to wonder how it would feel to be able to give Claire something that could help, even if it was the slightest improvement. Now I know. What I haven’t figured out yet is how to go on with that knowledge. Truly, living in normal is the biggest adventure and I don’t feel prepared, you never are. 
Colleen English 
Thanks for sharing your story on your blog. We have a 17 year old daughter Madeline who was diagnosed with Rett at age 3.
Would you mind sharing your opinion on something?
I am considering putting together an online community for parents of girls with Rett, where we can share resources, therapies that work, get encouragement when we’re frustrated, etc.
Two questions:
1. What do you think of that idea?
2. What would be the top 1-3 things this thing would need to do to help parents the most?
Thanks so much,
Todd Dawalt
Hi Todd,
I think that community is a critical piece when surviving Rett. There are already a lot of online communities similar to what you are suggesting on facebook, so it might not be too effective to reinvent the wheel, but some people don’t want to be on social media, so a place for them could be very helpful. As for top 1-3 things for an online support group, authenticity, safety and structure to the group would be the things that I think would be most beneficial. Good luck with your project and let me know if you launch something, I would love to check it out!
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