We’re between a rock and hard spot all the time, aren't we? Always looking for that place to feel normal again. Whatever that is.
This past weekend driving out-of-town for a school competition, I swore that it would be the very last car ride with my daughter, now 20 years old, because her “discomfort” level is just unbearable to human ears and because it’s dangerous to take her out of the seat belts to comfort her. I say this every time we get into the car for trips longer than 20 minutes. I say the same things over in my head. Why do I subject her to this if she doesn't like driving in the car? She's not in pain and we tried prescription medicine. Nothing works. We figured out she's just not comfortable in the car without her wheelchair. She can be on a school bus for hours and not complain.
She can be happy and smiling and even laughing. We can be listening to an audio book or singing along to song having a great time in the car. We can be quietly riding to our destination. Then suddenly, out of the blue, I see that expression change to a grimace and we know what comes next. And for the next 15 to 20 minutes off and on throughout the duration of our travels, we shuffle around the mini-van playing musical chairs, musical drinks, musical food, and musical toys trying to find a way to make her more comfortable. We wrestle with her spasticity trying to make her comfortable. We wrestle with our conscious. We wrestle with our roles as her caregiver and parents. We wrestle between the pain and comfort.
By the time I arrive at my destination, wherever it is, I really don't feel like talking to anyone. Even if the ride is out to visit a family member for a pleasant holiday, it takes me a long time to "assimilate." It's difficult to shift from “that mood” of feeling so inadequate as a mother to being in "that mood" where I am genuinely interested in what other people are doing. There was a time I remember being genuinely interested in what other people are doing, but sometimes I feel like zombie mom.
Sometimes I am thankful for our "sanctuary. You know that place? That place that separates us from the rest of the world in stadiums, movie theaters, and restaurants. The designated Wheelchair Area where we park and just be who we are -- a family. I leave my worries there, thankful that Elisabeth and I have a place to let go of the tension and anxiety from the drive. A place where I can just be with her without trying to figure out how to make her comfortable.
One time, a friend from church saw us at the baseball game sitting in the "wheelchair deck" and came over asking if they could take Elisabeth "for a walk" around the stadium so I could get a break. Then, they came back with a glass of wine! Snap! I was back to feeling normal! Whatever that is!
If people think I am being rude for not talking to them when I first arrive, I apologize. But, I hate apologizing because I never know what to say. I'm sorry? I'm sorry I can't be in a better mood because I just spent the last 3 hours trying to make my daughter more comfortable traveling? I don't want to share with others the level of stress or anxiety that goes on when I'm trying to make her comfortable. And I'm sure she doesn't want to hear it either. I tend to carry way too much emotional luggage as it is being her caregiver, I don't want a guilt trip. I don't want to hear what an inspiration I am or how tough it must be. I don't want sympathy. I don't want to wear my daughter's disability label and neither does she.
We just want to get back to "normal." Whatever that is.