Beth has been spending a lot of time with us lately. Usually, she's downstairs watching TV or writing or singing or doing all three at once. :) We would often go many hours without seeing her.
Lately though she's been hanging out upstairs. She'll eat breakfast at the kitchen table, then sit and talk with us. Asking questions, telling us about her plans for the day.
(For those that might not know, our house has a daylight basement and Beth's 'apartment' is down there. Her bedroom, living room and tiny kitchen [microwave, etc.])
Having Beth interacting with us so much has reminded me how severe her disability really is. Please bear with me as I share my heart. I can already feel the tears welling up and I haven't even written it yet.
Earlier today, I was getting ready to do the dishes and Beth came up to sit at the table. Well our conversation actually started hours earlier when she called me at work. "Mom? I don't understand." (I was thrilled that she had called me to tell me! Five years ago she would have hung her head, sat on the floor and cried!) So I tried to explain that she was to take her medicine, then set the timer for one hour before she could eat. I had written this on her note and she didn't understand my instructions. So I told her that if she wanted to, she could eat first, set the timer for an hour and then take her medicine.
She still didn't understand. I told her not to worry about it and that we would talk about it when I got home. So as I'm starting to do the dishes I asked her if she had taken her medicine yet. She said yes. Oh? I asked her if she had set the timer and she said no.
"I ate my breakfast."
"Right after you took your medicine?"
"Beth, you're supposed to wait an hour. So you took your medicine first, then ate?"
"So you ate breakfast, waited a while, then took your medicine?"
This went on for 10 minutes. Maybe it was me. Maybe I just wasn't being clear enough. This conversation shouldn't have been this hard! Beth is smart enough to get this, why isn't she understanding?! I was reminded - again - how different she is from her sisters.
As I'm washing dishes and trying to hold back the tears she says,
"I took my medicine."
"I did the..." (Puts her hand on her temple to think, then pointed to the oven timer.)
"You set the timer?"
"I did the timer. I did my chores. Then I eat."
"Okay, so you did wait..."
"I stay in my pajamas."
"What? What does that have to do with your medicine?"
"I stay in my pajamas while I take my medicine."
Oh. Okaaay. By now I'm exhausted.
Her speech is so hard to understand. I have to look at her when she talks. It doesn't matter what I'm doing, I have to be able to look at her when she talks. She interrupts with things that don't make sense. I guess they probably make sense to her, with the speed at which she thinks. But I don't think that way. It's draining. It makes me sad to know that we're living in two different worlds. I desperately want her to be normal in mine. Sometimes I think she almost is. But sometimes the differences are so vast I just sit and cry.
Sometimes I hate Down Syndrome.