I may have a disease called Spinal Muscular Atrophy, but I have a very fun,
full life. I have a mom who stays home to take care of me. I have a dad
who works, but spends lots and lots of time with me. I also have a lot of cool nurses who
help take care of me. If I wake up in the middle of the night, I know some one will be
there to entertain me!
I have 2 grandmas and 2 grandpas who dote on me, too. Of course, there is Aunt Chris who
comes and visits me every day of the week. I have other aunts and uncles and tons of
cousins. They all are pretty cool.
I also have a brother and a sister. At least that's what mom and dad tell me, but I'm
pretty suspicious, as both Kismet and Sister have soft fur and long whiskers, and say
meow!
Now that I'm 3, I like to be independent. I watch TV and videos all by myself. When I feel
like company again, I let someone know to come and snuggle with me!
I celebrated my 3rd birthday on January 23, 2000. It was a great day! Lots and
lots of my friends came to see me. They brought me balloons and presents. The guests had
lots to eat and punch to drink. Mom video taped the party and took lots of pictures.
It's a day that we will never forget!
I've been spending more time in my purple wheel chair. It is really cool. I
like being wheeled around the house. It's neat to watch my TV shows and videos while
I'm in my wheel chair, too. I also love to look out the windows and listen to my
portable CD player that Santa Claus gave me. I mostly listen to the Backstreet Boys.
Sometimes I will let Mommy put in a different CD like NSync, 98 Degrees or
the Sugar Beats.
I can't believe I am 3 years old !. I can't believe a whole year has gone by since my last birthday party. I've learned so much and had so much fun this year. We've all been thru a lot of changes this year, too. I feel that the whole episode where I had to be rushed to the hospital and then I got my trach, (March 1999) was awful as it was happening, but getting my trach and vent has made my breathing feel soooo good! I've been able to concentrate on the fun things in life instead of worrying about breathing.
I am a pretty lucky kid. I have so many people that love me and want to be around me. Lots of my friends remember me by visiting me or sending me cards. I love getting mail! Aunt Chris sends me lots of cards. A lot of times she puts confetti in the envelopes and it makes me smile when Mom sends the confetti flying all over and says, "She got us again!"
Mommy taught me the song "If You're Happy and You Know It." We adapted it so that I can show off my stuff. Mom sings, If you're happy and you know it, blink your eyes, roll your eyes, use your "voice", make a smile, wiggle your thumb, and wiggle your foot. I usually do it on command, but 5% of the time I don't-- just to see Mommy get all silly and begging me to do it right! (Ha Ha on Mommy!)
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