Thursday, February 3, 2011


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!


  1. Dawn,
    I think you need this little break from "Rettland"! I believe that you are an amazing mother and that you deserve to have your little paradise for a few weeks to love on your precious babies, and yourself (don't forget that part!). I know in my heart the meeting for the school will be less torturous than you fear it will be, and you will discuss how wonderful, smart, and amazing your little Reagan is! Hang in there Momma, you're doing a fantastic job!!!

  2. Hi Dawn, I know exactly how you feel! Sometimes it's overwhelming to be in Rettland, 100% of the time. Living with it is hard enough, let alone everything else that comes with it (like IEP meetings!) Thank you so much for your kind words on my blog, I am happy to "meet" you.