Thursday, September 6, 2012


I had kind of tricked myself into thinking everything was ok.  That even though Rett Syndrome is difficult so many families make it work...and that we'd all be ok.  But just in the past couple of weeks Rett Syndrome has taken two more lives and it has shaken me to the core.  The night before Emmy's birthday I broke a rule.  A great rule that my friend Colleen had told me about when I met her at the IRSF conference in New Facebook after 8 o'clock.  When I logged on, the first post that popped up was about an amazing woman, Karly, who had lost her battle with Rett Syndrome at the age of 27.  Karly had learned how to use a keyboard to type and had started a blog to share her insights.  Reading her blog was like a little window into Emmy's world and it gave me such hope.  If Karly could learn how to read and would Emmy.

And then yesterday, first thing in the morning, I learned that a sweet four year old, Anna, had passed away.  After we were diagnosed I watched a video of Anna and her parents on The View.   I didn't think that these deaths would affect me in the way that they have.  I thought I had kind of dealt with the whole 'early death' thing and had made peace.  But I am realizing that loss is something we will feel over and over again.  When we were first diagnosed I felt like I had lost Emmy.  I really had to grieve which was strange because she was still here, looking up at me and smiling.  And everytime I see Rett Syndrome taking over her body in a new or different way, I grieve a little more.  Hearing about these deaths was just a slap in the face, a reminder that one day I will need to prepare to lose her again.  I guess that is just the nature of the beast but man is it hard to swallow.

None of our Rett families knows what the future will bring but for the most part I feel like we are a pretty resilient bunch.  But not yesterday.  Yesterday seemed to knock us all down a notch.  I'm hoping that my fight returns today.  That the uneasy feeling in my stomach subsides.  After all, Emmy was happy this morning.  Her breakfast kept rolling out of her mouth but we moved past that.  She went on the potty, laughed at her sister in her jumpy thing and lifted her legs nice and high to climb the HUGE stairs on the bus.  I'm praying for no meltdowns at school and a good therapy session this afternoon.  I guess we just take it day by day, celebrate all the goodness and give the finger to the bad stuff.  She is here now and for that I am so very grateful. 

My heart aches for these parents who have lost their children and I hope they are feeling the love, prayers and support that is being sent by our family and I know many other Rett families.  


1 comment:

  1. So so sorry Leen. My heart aches when I read this post. Know that you and your girls are loved, thought about and prayed for often. xoxoxo