Our Lives

Our Lives: Limitations do not define us

CorrespondentJanuary 18, 2014 

CindySchaefer.AL.050113.JEL

Cindy Schaefer.

JULI LEONARD — jleonard@newsobserver.com

The conversation was a familiar one – one that always makes me uncomfortable. The mother-to-be was asked whether she was hoping for a boy or a girl. She smiled sweetly and answered with what I’m sure she thought was the most magnanimous answer: “Oh, we don’t care. We just want a healthy one.”

We’ve all heard that answer; maybe said it ourselves. But is it what anyone really means? What if that precious baby isn’t healthy? Or perfect. What if there aren’t 10 toes or 10 fingers? What if that baby will need lifelong medical care? Will that mom who only wanted a healthy baby be sending her little miracle back because someone got her order wrong? I sure hope not.

We say a lot of things we don’t really mean. In the early days of adjusting to having a child with special needs, some offhand remarks hurt. They still sting when I’m feeling vulnerable. “We are blessed to have healthy children.” Yes, you are. But although my children are not all healthy, I consider myself no less blessed.

Then there are things said that are just plain dumb. The nurse taking Kevin’s vitals at a local hospital: “Hop up on the scale for me.” And when he didn’t move: “Can you not stand up by yourself?” I guess the $35,000 wheelchair could just be a fashion accessory.

Or strangers who tell Kevin how good it is to see him getting out and participating in normal activities. As if he should be expected to spend his days closeted in his room.

And Kevin’s least favorite and most oft-heard remark: “Do you have a license for that thing?”

The year Kevin started kindergarten, his Sunday school class was to move out of the preschool wing and into the big-kid building. Except that nothing about that building was accessible to a wheelchair. So his class stayed where it was, a decision that didn’t sit well with all the other parents. One mom repeatedly told me that her daughter was upset that she couldn’t move up. “It’s not fair to her,” she said, reminding me that my kid’s needs were to blame. I know she didn’t say it to hurt me; she just wasn’t thinking. That happens a lot.

I forgive a lot of comments, simply because if you haven’t been there, you can’t know what it’s like. A woman who had known us for years looked blankly when I said we could not attend an event because we could not leave our then-teenager at home alone. Explaining that he was unable to open the front door and, therefore, escape in case of fire or other emergency, I watched as the emotions crossed her face. Confusion, shock, understanding. Many of our friends and family are simply unaware of what it takes; you can’t know what you’ve never stopped to see.

I don’t want to trivialize the concern of others. They are sincere when they say “let me know if I can help,” and presume I’m doing fine if I don’t call. Problem is, sometimes I have needed so much help on so many levels that I didn’t know how to answer that offer. Nor did I know what that person was really willing to do.

It is interesting to me that Kevin says he gets fewer silly comments since traveling with his service dog, Pandy. She takes the heat off him and, in a way, makes the wheelchair invisible. And, for the most part, that’s what he wants – for people to see him first, not the chair. It’s not that hard. The chair is not there to evoke sympathy; it is there to level the field as much as possible. If only the world could accept that. Kevin once wrote a poem for a school assignment that has stayed with me for years:

Limited

Weighted down by my limitations

Freedom captivates my heart.

Invokes its spirit into the deepest corners of my being;

But I am limited.

The four wheels that confine do not limit me,

Nor the muscle weakness I’ve always known.

What limits me is a world blind to its surroundings.

I was watching a local TV newscast recently when the story involved a man being hit by a car. The anchor described the victim as “a wheelchair man.” Seriously. Well, Kevin always did fancy himself a superhero. I’m inclined to agree.

Schaefer: cschaefer63@nc.rr.com

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