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.

Monday, September 13, 2010

What if..

One of the most dangerous places for me to go is the world of the what ifs.  It is better not to focus on what could be, but to rather focus on how to make the best of the way things are now.  It has gotten easier to block out the what ifs.  Iv'e had a couple of years of practice.  Sometimes, a whole day goes by without even a single thought about what it would be like if Abby was not born with Rett Syndrome.  Other days, it's not so easy.  When the thought comes to my mind, I try to force them back, and continue with the business of the day.  In some ways, the busy days are the easiest days to not think about thinks that need to not be thought about.

It is when I am alone, which is not often, that the thoughts are most present.  When I'm with Abby, I don't have time to wonder what everyone else's lives must be like-I am taking care of her.  But, when I am free to watch others interact with their kids, it different.  Standing in line at the grocery, I notice how well a girl Abby's age can articulate what she is thinking, while she tells her mom every detail about her day at school.    I wonder what Abby would tell me about her day.  And there I am.....the what ifs.  It feels like a punch in the gut.  Like when a little girl grabbed Abby's hand at the playground and asks me if she can play chase.  wow.  What if....

So, you see, I try not to think about such things, and instead focus on the here and now.  And there is a lot in the here and now that needs focusing, so that's a good thing.  This week has been a little all over the place, though.  One moment I am compiling a video of photos from Abby over the past 4 years and I'm dwelling on what it was like before her diagnosis.  Lot of what ifs there. The next minute I am freaking out about a post that I read about girls with Rett whose pass away suddenly.  What if Abby is one of the girls who loses her life to Rett?  It isn't often that I go there, but it happens.  All over the place, right?  We also have our strollathon this weekend, so I'm excited about how much our team has raised towards a cure.  A cure.  What if..

It is probably a good thing that I have been reminded so much this week of the cost of Rett Syndrome on Abby and the other girls (and boys) like her.  It makes me more determined to do whatever it takes to find a cure.  Trying to not think about Rett Syndrome is sometimes a matter of survival, but allowing myself to see it for the ugly thing that it is makes me want to fight harder to stop it.    


  1. I don't like the "what if" game either and it is also at the grocery store where my mind wanders the most. I watch other little girls sitting still in the cart, drinking and eating by themselves while their Mom checks out. xoxo

  2. how about being in the nail salon getting a pedicure at the same time three moms have their 4 years old getting PEDICURES!??? way to ruin my relaxing time!
    i got the chills reading this Ann Marie.

  3. what if...i told you i think you're one of the coolest people i've ever met. and, while we're on that topic...i'm really so glad i actually met you. this post definitely hit home. thanks for all you do to help ME stay positive and focus on the here and now. i think you're great. and i think abby's great.

  4. Looking through the pics of 3 years ago sure is hard. This week it was what if I was more aggressive in early start, blah blah blah. I like the what if we raise money and get a cure one, that is my favorite what if. And for that reason I don't go to the grocery store, all those typical kids always ruin it! Hope that you have a really great and encouraging time at the strollathon, you are amazing and so is Abbey for that matter. xx

  5. what if.... I could hear my daughter's voice... That is the big one for me. Kids do not approach me at the grocery store with your cute stories. They are very cute but they really hurt my heart!


  6. I'm so behind on my blogs - kids went back to school and I'm battling Annie's "team" - what if is soooo on my mind. This post is amazing, I could have wrote it myself if I was this articulate! Much love to you and sweet Abby! One day soon we will see that all the "what ifs" are within our grasp!