Tuesday, January 13, 2009

Delights Thru Disabilities - REPRINT April 2008

On traveling.....Whether in the van, restaurant, hotel, church or wherever...she is bent on showing her not so sweet side. Here's the lowdown on most of the services that Bailey attends. She does well during song service and special singing. (needless to say, she thrives on music) Then anytime there is prayer...you know...the most quiet time of a service, Bailey lets out a huge BBBUUURRRPPP!!! No big deal to her, it's just a normal bodily function....but oh how I wish I could just crawl under all of the pews and slip out the back door as if I'd never been there. But that's not all. Michael will get up to preach. Bailey doesn't understand that it's a time to be quiet. I used to always have an arsenal of things to distract her. I have a few business cards, pictures, about 1,932 (maybe not that many) pieces of Juicy Fruit (she's addicted) and little things. Well, all of that works.....for about all of 10 minutes.
So now she decides that she's not really wanting to sit in the pew, she wants to get up and walk around. AH! What am I to do? I could get up with her (from the 2nd row) but she'll scream when I grab her hand. Again, now would be a great time for disappearing cream! By the end of the service, I feel as though I've run a marathon. Bailey and I are both in bad moods.
*Back at the hotel* We're getting our PJs on. Bailey is given her meds. We get settled in. Shelby is sleeping with Bailey and does okay.
*Next night* We decide to sit on the back row; at least I'll be the only one distracted this time. And of course, it's the one night that she's falls asleep during service and causes no trouble at all.
*Later in hotel* Bailey is given her meds, we get settled in, PJs are on; but Bailey decides that she doesn't want to sleep. She's crying, Shelby's made, I'm frustrated. So the decision is made for us to play musical beds. I get into the bed with Bailey....which is what she wanted. By this night, I've had all I can take. I'm tired with the pressures of dealing with a special needs child. So here we are, lying in bed together. We are facing one another. She's so sleepy, but just can't give it up. She bats her eyes slowly, each blink showing more exhaustion. She's staring straight at me with silent, helpless eyes as if to say, "Mama, I'm sorry that I cant express what I fee., want or need in the way you'd like; I don't wish to be this way and I do the best I can."
What a humbling experience. As a parent, I realize that I'm (me and michael, actually) all she has. It's my job to 'know'. It's my job to make the special world she lives in a happy, calm and comfortable place. It's in those quiet times with her that I realize that regardless of the inconveniences her disabilities bring, I wouldn't trade her for a 'normal' child any day!

1 comments:

Tammy said...

I remember when you first posted this, and it brought tears to my eyes again.

You are a gifted mama.

:o)