of the most important things about me is that although I have Rett
and can no longer talk, I still have plenty to say. Most folks think
because I can't talk, I must not understand what they're saying, or
I must be deaf, and so they shout at me. What's frustrating for me is
they're the ones who don't understand!
says that I have a pure spirit, and she tells me that I'm an angel sent
to teach everybody what life is really all about.
me to someone who doesn't know me is difficult. Like all girls with
weird syndrome, and only girls get it, I have involuntary hand
Sometimes I wring my hands, sometimes I clap, and sometimes it looks
I'm trying to wash them. I'm not, it's just something that happens. I
have a unique movement. I cover my mouth with my right hand and flick
fingers of my left hand on my shoulder. I can't help that, but I can
my left hand in another way, too, a way that makes a lot more sense. I
can use it to say "yes"!
thing about me is my spirit and my smile. I have a smile that my mom
knocks people out, and I have this indomitable spirit. One time I
died because of an infection in my lungs, but I fought hard to live and
well, here I am today.
thing about Rett that I definitely do not like are the seizures. They
be a real pain in the butt. I'll be out with my parents or even just
TV, and the nasty things just take over. When I have them, I don't jerk
around like you might expect. Instead, I feel like I'm losing time,
I have a blank space in my memory.
I was a little girl, I really liked school. But as the Rett Syndrome
taking over, people thought that I must have Cerebral Palsy. They just
didn't know, but while they were trying to figure me out, and while I
losing a lot of skills because of the Rett's, they moved me all over
place. I only spent one year in "regular classes". I wish that I were
all the time. Isn't that a strange expression, "regular classes"?
nobody seemed to know what to do with me, and as a result, I started to
the puzzle was finally solved, and I learned that I had Rett Syndrome.I
also got a great teacher named Hope. (Isn't hope a wonderful name for a
teacher?) I wish that she could have stayed with me forever, because
she moved away, I really took it hard. Now I have a home teacher who
twice a week. We read and do a lot of stuff together.
noticed that kids and adults look funny at me when I go out. This makes
my mom furious. Sometimes I lower my head and don't look at them, and
times I look them right in the eye and smile. That really gets them.
them dead in their tracks and they look away ashamed. I really think
they just don't understand, not that they're trying to be mean. I wish
that everybody understood what it's like for me. Maybe if you tell your
friends, they'll tell theirs, and who knows, the ball might keep
and getting bigger and bigger!
a friend named Lauri, and before she moved, we used to have a blast
My mom would leave money and Lauri would order pizza for us, and we
stay up all night and watch movies. I like love-stories and horror
My favorite movies are the ones about angels, though. Lauri thinks I'm
an angel, too.
to say that my very best friend is my mom. We do everything together.
out to eat, go shopping, to the movies and stuff like that. I really
it when she puts make-up on me. My mom treats me just like nothing is
with me, she even yells at me sometimes when I won't cooperate with
I just laugh at her. What I love the most is when we cuddle together.
time you see someone in a wheelchair, remember this lesson. Remember
she (or he, of course),is whole, just like you. Remember that she has
and feelings and dreams and frustrations, just like you. And remember
if she can't talk, like me, it doesn't mean that she doesn't have
for visiting, Dani