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.

Thursday, January 5, 2012

Happy Christmas

Abby was very happy on Christmas morning.  Despite the seizures that were making her tired and the inability to play with toys that she would no doubt enjoy, and her inability to express herself vocally, she was happy.  Isn't that amazing?  I was so worried that she would be sad because she couldn't open presents or play with her toys, but that just wasn't the case.

I lost a lot of sleep over the past few weeks upset about the fact that Abby can't play with the toys that other girls her age can play with.  Shopping for Christmas should be fun, but its just so hard to find things that I think Abby would like, things that she can use her hands to play with, but that won't make her feel like a baby.  I left the toy store on the verge of tears with frustration more that once. It's been the same every year since her diagnosis...and birthdays.  Sometimes they are just reminders of what she would be doing had she not been born with Rett Syndrome.  Are parents of kids with special needs always haunted by the dreams they once had for their child?        

I am realizing now that, thankfully, this is my issue and not Abby's.  She was just as happy as any kid I have seen on Christmas morning.  No, she didn't tear open any packages, but she was laughing at her gifts and loving them just the same. She didn't say "Merry Christmas", but she lit up when we opened the gift that she made for us at school.  It is the same case with her birthday.  I stress about how to make it special for her with her limited ability to participate, but no matter what we do she always has a huge smile on her face.  Regardless of how we celebrate, she likes the attention from family and friends.  That's what really means something to her.  I'm sure she likes the gifts, too, but they don't mean as much to her as they do to other kids.  They can't really provide her a lot of entertainment.

I don't quite understand how it is that she isn't more frustrated than she is.  How can she not be upset that Logan talks nonstop and she just has to listen?  I don't understand, but I know that she is in a better place with her abilities than most of us.  She went through a phase a couple of years ago when she did get frustrated a lot more than she does now.  Losing the little hand use she had was tough.  Biting and yelling were the norm. But most of the time, she really seems to be wonderfully content.  Seeing her face all these challenges with a smile gives me strength.  If I could be a little more like her in the face of hardship, that would be a wonderful thing.      


  1. And such a beautiful smile she has! It's amazing how strong our girls can be. So glad Abby had a happy Christmas!

  2. so so true! im so happy she is so happy!

  3. Ann Marie, we haven't met but my daughter was diagnosed with RS in July 2010. I am still fairly new to all of this and have loved reading others blogs! I just had to comment because I am THRILLED to hear that Abby is so content now. My Emmy is frustrated beyond belief and screaming, biting and hitting is our norm right now. I pray, pray, pray that one day she won't be so upset and make peace with her limitations. I can deal with Rett Syndrome but I can't deal with seeing her so sad all of the time. That's what breaks my heart. Thank you for posting this one, made me hopeful for Christmas's to come! I started a blog not long ago...http://alongfortheride-colleen.blogspot.com/