Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Tuesday, December 28, 2010

Good bye 2010!

This has been a rough year for Abby's little body.  Many of the scary Rett things that I hoped she would never face have presented themselves this year.  It has become clear that Abby does not have the mild case of Rett that I told myself she had, if there even is such a thing.  After the year she's had, denial is no longer an option.

I didn't completely lose it though. Even though I am up to my eyeballs in all things Rett, I am not nearly as overwhelmed as I was at this time last year.  As Abby's symptoms increased, so did our understanding of her disorder.  I went to my first IRSF conference, met with a long list of specialists, and formed relationships with other Rett moms. Sharing this journey with others who "get" our girls has made all the difference.  It is still sad and frustrating. There are still many times where Rett Syndrome keeps me up at night, but my goal this year is not to obsess over every thing that Abby does that's not normal.  Abby has Rett and her body doesn't work quite right.  Now, that's the understatement of the year.  Even so, there are things we can do to help it work better.  So we will do those things.  Worrying like crazy is not one of those things, so I'm going to try not to do it.  I'm going to try to be positive.  Even as I write this, though, I am struggling not to think about what more Abby will lose before this time next year.  Ugh.  It's a struggle, but I'm trying.

The good thing is that Abby's spirit has not taken the beating that her body has.  She remains the happiest little girl I have ever seen.  She has become less frustrated this past year and she seems more comfortable in her skin.  Over the holiday, for instance, when she got overstimulated, she took a nap. It sounds simple, but it that has not always been the case.  In the past, she would have screamed, cried, and bitten me or anyone else holding her. There would have been a routine of singing particular songs or playing certain movies to calm her down.  If that didn't work, we would have left.  This year she just fell asleep.  It was awesome.  
She fell asleep in the middle of all the action at nearly all of the family gatherings.  I was so happy for her I took photos.  

Despite her Rett issues, she seems comfortable, and I am so thankful for that.  I am also thankful that Logan is healthy and happy.  He has changed so much this year.  He has become a sports fanatic and a comedian, always keeping us laughing. This is what happens when he is asked to smile.  He cracks me up.  He will be two in January.  Unbelievable.

While there is much to be thankful for in 2010, I am looking forward to 2011.  I think Logan has spent the past 12 month in an early version of the "terrible two's", so I'm thinking this year will be a breeze, right?  I am excited for Abby to get more ways to express herself and I can't wait for the research breakthroughs that this year will bring.  I really hope a treatment happens soon for our girls.  I hope research gains even more momentum this year and a treatment will be available SOON!!!


  1. Oh sweet Abby, your beautiful smile makes my day!!! So glad you were able to sleep through the chaos of Christmas. We are praying for research breakthroughs this new year as well. Here's to a wonderful 2011!

  2. thanks for this reminder. as i read it, i get a little on edge wondering what might happen to leah as she turns 4...as i try to convince myself she currently has a "mild" case. ugh. but we're getting more comfortable and confident as well...and i'm looking forward to my first irsf conference (it was my christmas present!). will i see you there??? please say yes. :)