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?"
"Yea."
"Beth, you're supposed to wait an hour. So you took your medicine first, then ate?"
"No."
"So you ate breakfast, waited a while, then took your medicine?"
"No."
Sigh.
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.
12 comments:
I am glad you shared your heart. I have often thought that even though I love Kristen and have accepted the fact that she has Down syndrome, I know I still have days where I just hate it. Will those days ever go away? I do not know for me personally but I do know that the challenges in life it brings for them will never be easy to see. I appreciate your honesty, felt the frustration, and am glad you were able to vent your feelings. I will be praying for peace because only He who truly knows our heart can help us with these matters.
Thanks for sharing and a huge AMEN! It is sometimes so hard to figure out the logic in Alex's Brian..but that is just what it is.. A different logic than mine. Beth sounds totally on top of her medicine, just in her own way! Most likely not what the doctor ordered though. Good luck
Oops *brain* we don't know any Brian's yet!
Oh man, we have been there too. And when I get frustrated (especially about sequencing and extraneous information) and push a bit harder (..okay FIRST you did this, THEN you did what?) Jess looses all ability to relate anything. By that point I am not even sure she would be able to tell me her name if I asked her. And by that point I am so frustrated (as I am sure is she) and mixed up, none of it makes sense and yet when its critical (medicine, street safety) you think you have to find a way to figure it out and .....arghhhhhh! You are so not alone on this one!
Now you have me in tears. I'm hating it today to. Attempting to potty train. Max is 4, but doesn't get it. None of it. Doesn't talk, doesn't sign. Doesn't get rewards. Sat in speech therapy today and just stared at the therapist when she asked if he wanted more. It's like we're talking in Greek. So frustrating and sad. When did Beth begin speaking? Max only says 'da' for dad. No other words. Ugh.
That sounds hard. I can imagine the frustration.
Cindy, I so appreciate your honesty. We are all in the same boat, so we understand your heart. Hugs to you my friend.
I'm glad you shared--just seeing all these comments means we are all not alone. Big hugs to you, Cindy!
Hugs, Cindy! Oh I absolutely can understand your frustration and I am so thankful for your honesty. I love my daughter and I know she is who she is because of Down Syndrome, but goodness gracious, some times I feel like she's being held back by her disability. It's so hard to find the joy in some moments and I'm glad you have the courage to admit that. We're all in this together. Beth is an amazing woman and she has an amazing mom.
Hugs to you. I hope you continue to share your experiences.
I wish I had something to say to make you feel better. We are in a different place but there will come a day where I will stand where you are. Some days, I hate Down syndrome too, you are not alone. Hugs.
Cindy, thank you for your honesty. My Aunt Peggy had a way of thinking that made sense to her but not necessarily to the rest of us. You also had to look at her to understand what she was saying and even then. . . once she kept tell me that "John Denver Rocky Mountain High for Michael's wedding". That was Peg's way of both reminding herself and telling us that Michael was getting married in the mountains near Denver. I don't think you are alone. You love the person but you don't have to the love the syndrome {HUGS}
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