Friday, April 10, 2009

What If…

I'm not sure where to begin with this entry. I got Taylor's school progress report in the mail this week. One of the sections described how Taylor could pick out 3 numbers, up to the number 9, with 60% accuracy. I read that and had a mixed reaction that involved some tears. On the one hand, I was excited that Taylor could pick out a few numbers a little over half the time. On the other hand, Taylor is 19 years old and should be finishing up her first year in college.

After 19 years of living with a profoundly developmentally delayed "child", you would think I was done grieving for what might have been. In a sense, I am. However, I think there are always going to be those times when it just comes back to haunt you.

Honestly, I can't really imagine Taylor any other way than the way she is…a 6 foot tall toddler with a loving personality. I will admit to the occasional day dream where Taylor is a typical teenage girl. I wonder if she would be really girly or more of a tomboy. Would she still love car magazines like Mustang 5.0? Would "3 Doors Down" and "Nickelback" still be her favorite bands? What TV show would take the place of her current favorite, "Blue's Clues"?

I rejoice at every new accomplishment she makes, no matter how small. I am proud that my child is the popular one in her class because of her personality. I love the fact that she knows more people in our small town than I do. I can even handle the fact that more people know me as "Taylor's mom" instead of Dawn.

There are just those short periods when I need to grieve again for what might have been. I guess that will never go away. My doctor once told me that it is healthy to give into those moments of grief…as long as I don't let it take over. I think the fact that I get excited because Taylor learned to say "ta da!" shows that I don't dwell on the "might have beens".

Friday, April 3, 2009

A Little About Taylor

We have finally weaned Taylor off of the one seizure medicine. I haven't noticed an increase in her seizure activity but then, she has so many seizures a day, I think it would be hard to tell. Now it's just getting someone to prescribe the new drug. Taylor sees 2 neurologists and they each think the other one should follow Taylor and prescribe the new medicine. It sounds like a comedy of errors right now.

Taylor is having some pretty rough seizure days right now. The seizures come like contractions…anywhere from 10 to 30 minutes apart. There are hundreds of them a day. She will just start shaking or staring off into space. Her absence seizures usually involve her eyes looking off to one side and her rolling her hands up in her shirt. She actually has a seizure we call "the Elvis". She shakes on one side of her body and one side of her mouth sort of goes up in a sneer…sort of like Elvis Presley. There are just some things that are better dealt with using humor.

Taylor loves her mp3 player. Right now, she is fixated on listening to it all the time…especially when she is throwing her tub toys over the shower curtain and into the tub. There is just something about the sound of the plastic hitting the tub that makes her laugh. Taylor also loves her photo albums. We have family pictures in there and she will look at them so much that we have to buy new albums for the pictures about every 6 months.

She still loves Spongebob Squarepants, but she has found the Nickelodeon show "Drake & Josh" now. We will hear her in her room laughing hysterically. I think it's because she has always found slapstick kinds of things funny. Taylor also loves car magazines. Mustang 5.0 is her favorite but she will look at the free AutoTraders till they fall apart. I have no idea what it is about car magazines that she finds so fascinating. I just know that when we go to Wal-Mart, she is drawn to the magazine section.

Taylor is definitely an interesting character.