Thursday, November 20, 2008

The Angel, Part 2 - As Told by The Angel

(translated and typed by Mom)

My name is Gabe. I'm 14. I like to smile. I'm mostly a pretty happy guy. I don't talk 'cause I have Angelman Syndrome. That means I'm missing a little bit of chromosome 15 in my DNA. The doctors don't know why it happens. Having Angelman Syndrome means I have to do some things different than other kids. Mom takes lots of pictures, so I'll show you what I mean.

I have tons of toys. I like to stay on the floor where I can get to them easy. When I make a really big mess, Mom goes around the house yelling "Where's Waldo?" We have a Waldo book - he gets lost in junky places a lot. I get her point. But my name is Gabe, not Waldo, so I don't answer.

I like to dump all my toys out and hide in the toy tub. Lots of times, I fall asleep inside. Sometimes it's the only quiet place there is in our house!

I do goofy things like scratch my nose when I'm sleeping. Mom gets mad at me. She thinks I do it on purpose right before holiday picture time.

I amuse myself with all sorts of odd toys. Flipping over cheap cardboard tables is pretty entertaining.

Being in the water is one of my favorite things to do. The last time we went to Florida, we stayed at a house where we had our own pool. I had a blast!

I love going to the beach in Florida. The water is fun to watch, and the sand blows all over my face. One time I had to go see my doctor, and he found sand way inside my ear. That was months after we got home from Florida!

I LOVE the water! For some reason, most kids that have Angelman Syndrome love water. Sometimes I get to go see my friend Matt at his work, and he helps me in the therapy pool. Those doctors think I'm working, but I'm really just there for the good time. But maybe they do know what they're talking about, because when I'm in the pool, I can walk all by myself!! All over the place! It's the weirdest thing! I wish I could walk when I'm not in water. Mom told me she'd buy me a big barrel and fill it with water and stick me in it - I think that's just her being weird again. I'd roll my eyes at her, but I've seen Bucky do that and get grounded, so I just smile and wave

Sometimes I irritate my mom because I won't sit still for pictures. How's a guy supposed to concentrate on the camera when he knows there's presents behind him? Jeez!

I like to look at Christmas lights. Mom doesn't put lights up outside very often, but when she does, I make sure I watch them. I like to drive around at night with my family and see which houses do the best job decorating for Christmas. Going to the zoo at Christmas time is lots of fun, too, even if it is freezing cold.

My mom says I'm a goofball. She's always kissin' on me. I like to sit on her lap and rock. She says I'm getting kinda big for her lap. I'm not real tall, but I guess I am kinda heavy.

My dad is pretty cool. I had donuts instead of birthday cake one time, and he helped me blow out the candle. I think he likes donuts because Homer Simpson likes donuts. Dad and I like to wrestle on the floor, and then take a nap together.

My friend Kim picks me up from school most days. Kim lets me help her with her filing. That's lots of fun - she has papers she doesn't need, so I get to shred them to pieces. She takes me on long nature walks around town. We sit on a park bench and talk to people when they walk by. (Well, she talks - I mostly smile.) Kim fixes my supper and gets me ready for bed. She helps my mom keep our house clean. That's a really big job 'cause we have a really big family. On Sundays if I skip church, Kim and I sweep and mop the floors and dust the furniture. We live by railroad tracks and a farmer's grain place, so our house is pretty dusty. After we're done with the housework, we camp on the floor with blankets and pillows and watch movies. Sometimes Kim takes me to her house to see Mr. Lee and the dogs. Mr. Lee feeds me bread sticks and spaghetti. I really like going there.

I have lots of people who help me. I need help in the bathtub. I need help feeding myself. My friend Chass is really cool - she has very long hair, and sometimes she lets me play with her pony tail. Sometimes I try my hand at being Hairdresser to the Stars.

Preston is my oldest brother. He takes really good care of me. When I first started having seizures, Preston would get me out of bed in the morning and put me in my chair, then go find Mom and Dad and tell them to get up so I could eat breakfast and take my medicine. Preston and I watch movies together a lot. Mom says I'm old enough now to watch the cool guy movies like the Mummy movies and King Kong.

Savannah plays with me a lot. She feeds me, and gets me ready for bed sometimes. She also wears my clothes! She's younger than me, but darn it, she's about 5 inches taller than I am! She likes to go walking with me and Kim. She makes sure I'm wearing cool clothes and my hair is ok.

My brother Bucky is super cool. He picks me up and carries me when I'm too tired to walk. He lays in my bed with me and watches movies. He keeps me lookin' sharp, too.

Then there's the dog! I love torturing her! I drag her all over the place with her leash. Mom says I have an evil chuckle that I use when I'm doing something I'm not supposed to do. Like strangle the dog.

One time I bit Frannie on the nose. Everybody laughed about it, but I still got yelled at.

Sometimes in the summertime, I'd like to go outside more, but since I have Angelman Syndrome, there's a couple reasons I can't. People with AS sometimes have problems with their body temperature, and that's me. I don't sweat, so when it's really humid, I have to stay in air conditioning all the time or I get sick. The medicines I take for my seizures make it even harder to sweat, so I'm stuck in the house on hot days. Besides, mosquitoes really like me for some reason, and they're really bad around our house during the summer, so I just stay inside and watch movies.

This is my very favorite blanket in the world. I take it everywhere. It was Preston's when he was a baby, then he gave it to me. It's been to lots of different hospitals with me. It went to Texas with me to see my cousins. It went to Florida with me twice. It went to Tennessee with me. It went to Michigan with me. It went to Missouri with me. It is my best blanket! I like to chew on things, and this blanket is very small now because I pull strings out of it with my teeth.

Mom takes pictures all the time, and sometimes a guy just gets tired of it!

Kids with Angelman Syndrome have problems staying asleep at night sometimes. So we have to make up for it any way we can. When I was littler, I used to stay awake all night and sleep all day. Since I go to school now, I sleep better most of the time, but every once in a while, I still have to catch up on my rest.

If I'm tired, I'll fall asleep anywhere. I even sleep standing up sometimes!

We've been to Disney World twice. It's hot in Florida, but we go in October when it isn't so humid.

Kennedy Space Center and NASA are way cool! You get two days for the price of one - a good deal, according to Mom and Dad!

I don't always cooperate for family pictures...

But sometimes I do...

Then again...

You get dibs on first rides when you have a wheelchair. At Disney, we never had to wait in line long, 'cause they have special entrances for people in wheelchairs. Besides, my mom tends to have problems with those turnstyle things.

My mom likes this picture, so she stuck it in here.

My dad is a pretty ingenious guy. I needed some kind of bed that I could take with me when I spend the night places, so he designed this kinda like my bed at home. I have to have sides so I don't fall out. Dad and Mom sewed this up, and now I can sleep at places other than home, without sending my mom into a panic that I might hurt myself.

Like I said, I'm a pretty happy guy...

I'm a normal boy that likes to have fun...

I figure God gave me this smile for a reason, so I might as well put it to good use...

I hope you enjoyed learning more about me.

To find out more about kids like me, go to this place.


Teresa said...

Very cool. Gabe, you should write a book! "Gabe Goes to School". Gabe Goes to Church". Gabe Goes to the Pool". "Gabe Paints a Picture". Gabe and His Dog". Gabe Gets in a Fight" ...well, maybe not THAT one!
Love, Aunt Teresa :)

*~Tamara~* said...

Dear Gabe,

I have a certain dog you can torture. I won't tell anyone.

I love you very much. And I will kiss your nose every time you scratch it.

Aunt Tam