I have been avoiding Rett Syndrome. Yep, it's true. I don't want to think about it, talk about it, cry about it, write about it, or even dream about it's cure. I began 2011 with one major goal, to be happy despite all my sadness surrounding this disorder. It literally sucked the life out of me after the diagnosis. I felt that I was in a dark place last year, especially in the last several months because of the holidays. I tried really, really hard to be happy but always felt empty inside. Sure, of course there were moments of happiness here and there but it was always a fleeing moment, nothing that would stick around for my pity party.
Happiness is a state of mind according to Mr. Webster. Is it possible for my mind to trick my heart? Can I find happiness again if I block out all things related to Rett Syndrome? But wait, how is that possible when my daughter's life is so severely impacted by Rett Syndrome? Yep, it's quite a dilemma. My approach for the past couple of weeks has been to ignore it all and just focus on the love that I feel for my family. My heart swells so much when I am cuddling Reagan and she turns to give me a look that says everything that I need to know. Or when I am sitting on the floor with both of my girls and they are giggling at each other over who knows what, probably a secret language that they are sharing. Or when I am holding Lauren and she squeezes me tight and gives me the best hug ever, complete with patting my back and followed by 5 wet kisses!
It won't be long before I have to get out of my little paradise and join Rettland again. Reagan's school meeting is in a few weeks and nothing sounds more depressing that sitting in a room of school district personnel to discuss things that your 3 year old daughter can not do thanks to Rett Syndrome. Or maybe I should convince myself that it's actually a meeting to discuss how smart my daughter is and everything that she will accomplish at school, that would make me happy!
Abby's first visit to Boston for the IGF-1 Trial
4 years ago