Dear Santa,
What. A. Year.
It’s my sixth, as you well know, and it
definitely had its ups and downs.
The Ups:
I have continued to improve my physical strength and
stamina. My teachers and therapists are extremely pleased with my progress. I
make sure to get in a certain number of steps each day and I regularly practice
the stairs.
I’m really getting good at helping to feed myself at home
and at school. We started with just a cheese or apple stick. My helper would
put my hand on the food and then their hand over mine, guiding my hand to my
mouth while stabilizing my elbow. Well a year later, I need no stabilization,
just a bit of guidance and pretty much no help with the grip. I can even use a
spoon and a fork.
I know. I’m basically amazing.
I became a big sister this year. That takes a lot of
adjusting and I took it all in stride. I really like Kate, but she can be
pretty inconvenient at times (read: bedtime). She’s loud and messy and she
cries a lot. But, I remember what it was like to be a baby and I still remember
what it’s like to have a need and not be able to communicate it. So…mostly I
try to be understanding and just give her lots of kisses.
I also started kindergarten this year. I’m doing well with
my switch as well as using my eyes to communicate. It’s a hard road. Sometimes
my body just won’t work at all. And sometimes when it does work, others aren’t
watching. But I just keep trying. I also use electric scissors and am hoping to
get a computer next month. Mommy keeps saying something about insurance holding
things up…
I’m still very compliant when it comes to dressing warm for
the winter. It’s already hard to move my little body, let alone moving it when
it’s smooshed inside of snow pants, a coat, mittens, a hat and boots. But I do
it. And I usually have a smile on my face.
I was kind of horrible earlier in the year when it came to
working on my potty chart. So, mommy ripped it off the wall and we don’t have a
chart anymore. I realized she was super serious about the issue after her
tantrum, so I’ve tried my best and I go multiple times a day in the potty!!
I am a great sleeper. Period. (Mom says this deserves triple
points.)
The Downs:
Mostly, there has just been one down this year and that is having
seizures. And those aren’t even my fault! They just won’t stop, Santa. They
make me so tired and the medications make me crazy. We’re on a first name basis
with the school nurse and the neighborhood pharmacist. Mom, Dad and the
neurologist are trying their very best to find what works well for me and they
think they’re onto something. Is your desk wood? If so, knock on it because I’ve
only had 4 seizures during 2 days of the last 2 weeks! That’s a really good
thing.
Well, Santa, as you can see, I’ve been overwhelmingly good
this year. It’s kind of a no-brainer. As for gifts, I’d just like for you to
cure Rett syndrome. Buuuuut, if that’s not possible this year just keep working on it and bring a doll for the tub and
some blocks for me to play with my dad instead.
Tell Rudolph hi!
Love,
Leah Layton, Age 5
p.s. I’m still in New Hampshire this year, but I’ll have a
new house next year. Do you have an email where I can forward you my new
address when we know it?
p.p.s. You're looking mighty young this year. Dad wants to know your secret!
