Awareness

As painful and heart wrenching as my last post was, during that period we also had experiences that overwhelmed me with joy and had encounters that really gave me hope. As obvious as it sounds, it started the day after we received our diagnosis. That morning I shared with my Bible study the good news, that we didn’t have to search any longer, we had received a diagnosis of Rett Syndrome. I was really surprised when one of the first responses was from a lady, who I honestly thought was a little crazy, that had read about it in the paper that morning. I didn’t normally think she was crazy, I just thought surely she must be confused, nobody has heard of Rett syndrome. Sure enough, she was more sane than I. There was going to be a big event that Friday and there was an article about an amazing little girl with Rett syndrome and her super-hero parents. Things fell together and we stopped by at the start of the night to say hello to the family that was hosting it as well as a few other families that had driven hours to be there. So the week that we received our news, we were also able to meet 3 of the most inspiring families that were already living with Rett Syndrome. The only reason that we got that connection that, at the time was so inspiring, was because there was a bunch of people out there promoting awareness. It is no secret that I don’t generally enjoy awareness. Last year I blogged about how I was done with it on Oct. 3. This year it was Chloe that at first changed my heart. I don’t know how, but each time that I have felt like I am over it and just crave an hour that I can pretend that Rett doesn’t exist, things happen to change my mind. First it was a friend’s middle school-aged daughter putting together the most thoughtful and heartfelt presentation and getting excited that there are 30 less people who haven’t heard of Rett Syndrome. Time goes by and then a friend that I hadn’t heard from in a while is in school to be a medical assistant and she is doing her presentation on Rett Syndrome and wants to work with Claire and I on her project. A few more days go by and I learn that a friend wants to use his business to raise not just money but awareness and all for Rett Syndrome. I sit and I think about how over my five years in this world, one of the things that is consistently encouraging and refreshing is when somebody knows what Rett Syndrome is or has at least heard of it. It is the difference between being tired in line at the coffee shop and somebody commenting on my t-shirt and telling me that they have a friend who has a daughter with Rett Syndrome, changes the day. So to the those of you who have gone before me I say thank you for talking about it when nobody else was. To those that I have been on this journey with, thank you for sharing your child and letting people learn about them. To those of you that choose to talk about it, not because you have to but because you care and strive to make the world better you have my sincerest appreciation. It is the combination of them all, people working together in small little groups all over the country world so that families that are newly diagnosed this year will come across a few people that have heard of it; and that friends, is a world of difference. So thank you to you all for doing your part and for embracing Rett Syndrome Awareness month at the level that you can.  If you are interested, a wonderful video was produced a while ago, it features Julia Roberts and discusses Rett Syndrome. If you are on facebook you can click here it will take you to an app that is streaming the video free for October. If you have 50 min. I think it would be worth your while, but have a tissue close as it might pull hard on your heart-strings.

2 thoughts on “Awareness

  1. I'm all for telling people about Rett syndrome – I do it ALL the time! And I'm always delighted if people know about it, or make a connection between Amy and another girl they know or something they've read.

    What I'm not a fan of is some of the gimmicky stuff that goes with 'awareness months' (for lots of things, not just Rett) – because I don't see how it helps particularly. But maybe making people feel good is helpful enough 🙂

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