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.

Saturday, October 1, 2011

Abby does things that surprise me every day.  Sometimes they seems small, like starting to lift her foot up to go up the stairs.  Sometimes they're big.  Today, it was a big day. Fall is here, and though it was a little cool, the sun was out and the leaves are beginning to change, so we couldn't resist taking the kids to go hiking.  As you can imagine, we don't go on long hikes, but it's nice to just be in the woods.  Lately, Abby and I walk around at the trailhead with her wheelchair, and Logan and Wes run through the woods.  Today, however, I noticed that the trail was only going to be 1/2 mile roundtrip.  It was uphill for the first half, and down hill on the way back.  At the risk of carrying Abby uphill for the entire walk, we left her chair in the car and only grabbed her harness.  I thought that she would walk for a while at least, and then we could carry her or head back to the car when she stopped walking.  She does very well with her harness, but she doesn't have a lot of endurance and she sometimes goes limp when she gets anxious.  Much to our amazement, she walked up the entire trail with a huge smile on her face the whole way.  When we got to the top, she was out of breath.  She was breathing heavy and fast because she walked a quarter mile uphill, not because she has irregular breathing.  I don't think I have ever seen her out of breath out of exhaustion before.  Her body having a typical response-that's not something that we see every day.  Anyhow, after catching her breath, we turned around and she walked all the way back!  

She rocks!   

I think there will be many more trips to this forest.  I love paved trails in the woods.  Dirt trails with roots and rocks are tricky for unsteady little ladies.  When she gets unsteady, she gets anxious.  When she gets anxious, she collapses (hence, the need for the harness).  When she collapses, she needs to get regulated again before she can bear weight on her feet.  Paved paths may be just the thing for us this fall.  

With this being RS awareness month, I will focus a lot of my attention, and the attention of others, on Rett Syndrome.  This is a good thing because we need RS in the public eye to get the support needed to fund a cure and help our girls.  Sometimes it's hard, though, to be consumed with Rett Syndrome.  I hate what it is doing to Abby and all her friends.  I am going to take time this month to not only spread awareness, but also celebrate the amazing things that Abby is doing every day in spite of Rett Syndrome.  Maybe this will keep me from letting Rett Syndrome get the best of me this month.  On days like today, it is certainly not getting the best of Abby!


  1. This made me smile... What a wonderful outing! Focusing on those small (but also very big) victories is what keeps us all going!
    Way to go Abby!!!

  2. I love this post, I love you, I love Abbey. I am overjoyed for you to get such a positive way to start the month. Way to go Abbey, don't let it get the best of you (or your mom for that matter) xx

  3. I am so proud of her! Hiking this weekend we are inviting ourselves!

  4. hooray for abby! such great news.