We are very blessed that Anna Cate's mutation of Rett syndrome is mild and she does not suffer from many of the complications that are associated with Rett syndrome. While many times we talk about what they can't do, I like to focus on what she can do!
She can walk, run, and jump (especially on the bed and laughs knowing she is doing something she shouldn't). She does have a growing vocabulary of about 70 words (mind you that she does not use all 70 words every day) and she can make the sound for almost every letter of the alphabet! While she does have the stereotypical hand-wringing, she can hold her own cup to drink, she can use her own stamper to stamp her name (and approval!) on things, she can color (in her own Picasso style), she can dribble a ball like the next Anne Donovan (yes I had to look up a famous basketball player, as this is not my sport!), she can manipulate her computers to communicate (though at times there is still some frustrations), she can use her hands with no problem to tease just like a typically developing child (loves to tug her brothers ears, swipe things off the counter; Swiper, no swiping!), she can use her hands to flip through the pages of her favorite books or magazines, she can use her hands to touch my face softly (or to grab a hold of my nose like she is going to pull it off!) and she can use her hand to hold mine!
It amazes us that when we want to pull her hands apart it is like prying open an old rusty door that you think is going to break when you finally open it, but when she wants to unlock her hands, it is with ease.
Rett syndrome obviously affects Anna Cate's ability to communicate like a typical 12 1/2 year old and with this she has behaviors out of extreme frustration and some anxiety issues. We call her our little Ninja as the moves this child pulls out is very impressive when you think that Apraxia (people with apraxia often cannot perform controlled, purposeful movement, despite having the physical strength and intellectual thought and desire to do so) is a huge problem in girls with Rett syndrome. We look at her while she is our little Kung Fu Panda and wonder if for the moment the apraxia switch is turned off! Joking aside, this is the hardest part of Rett syndrome for us and our family. It is difficult for us to carry out activities on a moments notice for the idea of a sudden transition can cause a behavior. Or being someplace fun (i.e. the zoo) can be a shortened trip for "the switch with the associated look" gets flipped for an unknown reason (we are constantly trying to figure out why things happen) and we have to leave. Trying to figure out the sudden "flip of the switch" is an ongoing battle in our house. When you think you have it figured out she stumps us again. The lack to communicate is the most frustrating part of Rett syndrome for our family. We are the parents and adults and can deal with situations like these better than Anna Cate's siblings who just want to live in the moment and don't want their parade rained on! The quote, "What doesn't kill us, make us stronger", is all I can think about during these times for Betsie and Eli. They have no idea what it means, but I think they are starting to get the idea.
But every day she takes chances and tries to do what her peers are doing, whether it is fighting to hold her cup herself, practicing to hold her crayons and other art supplies, practicing cutting with scissors, practicing feeding herself with the proper utensil, practicing typing on her keyboard and practicing to say new sounds and words. And she loves to learn and wants to learn the same things in school that her peers are learning. Some days she can do it easily and others it is a day of frustration. But with frustrations she doesn't stop trying because she wants to get over that mountain and gain another skill that she can check off her list!
While watching her struggle and try so hard breaks our hearts, seeing her win and accomplish the climb to the top is priceless, as the view is amazing!
Life for us with Rett is not about she can not or will not, but what she WILL and DOES. Every second of every day matters and its all about practice. After all practice makes perfect!