Chelsea was a good friend. She never looked at me with disgust or condescension. She let me do things when I could and asked my opinion before taking action.
But sometimes her kindness was just too much. And there was no way I could tell her.
For instance, taking me to meet her friends was a nice idea and I had some hopes that her friends would be as nice as she is, but I also knew that usually people had a hard time accepting me. This certainly was the case today. But as Chelsea pointed out, it went better than most of my introductions. I guess she did know her friends well enough to say the right words.
"How'd it go?" asked my Mom.
"Not bad." Chelsea responded. "If we hadn't forgotten her computer it would have been better."
"Well, they'll see it at school Monday, right Lainie?"
I blinked and smiled. Mom was full of support and love. She never felt bad that I was sick, and never treated me like I was. I think she was just glad I was alive.
"Well, dinner time, hon! Bye Chelsea, thanks for trying!" Mom wheeled me to the table and set my brakes. Chelsea waved goodbye and shut the door behind her.
"You want the blue or the red today?" Mom asked, holding up two colors of straw cups. I nodded at the red. At least I got to choose some things in my life. Lately, as I have reached my teenage years, my spirit has rebelled against people making decisions for me. I have felt the urge to get angry and refuse some things. It just turns my insides and comes on suddenly. I don't like it, but as my Mom says, growing up is hard.
Mom cuts my food into tiny bites. It gets harder to chew it every year. She feeds it to me, asking me if I want more, asking me if I need a drink. Sometimes this is so tedious, I just give up and stop responding, letting her feed me until my plate is clean and my belly is over-full. She just sighs at me, knowing I am despondent, and gets my evening routine started.
Every other night I get a bath and my hair washed. Tonight is bath night. Sometimes I hate getting a bath. Sometimes Mom rubs my head too hard, or I slip and she holds my arm too tight. I give a moan, but its too late, the pain has already been and gone.
Some nights I have a lot to say. I have stories I want to share, but I can't speak them. Sometimes I feel like I'll burst if I don't tell. I try to use my computer when the secrets or stories are too much, but it usually can't keep up with me, or the words aren't in the database. By the time I've put together a sentence, I'm all tired from spelling words, deleting the wrong ones accidentally picked, and getting though the menus to even be excited over what I had to say. Mom tries to guess, but she is usually wrong.
Mom turns on the TV for me at night after she dresses me and puts me to bed. Sometimes I think and think. I wonder if my Mom ever regrets how much she has to do for me. I can see it in her eyes some nights, how tired she is.
I wonder about Chelsea, too. Why is she so nice to me? Does she have some dark secret in her past that she is hiding? People are always motivated by something.
I wonder about school. It's always the same though. Same stares, same pointing fingers, same questions, same mean teachers, same hassels. I don't expect miracles. If there were miracles, I would not be in a wheelchair.