Forever Parents

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Sheina and Stuart Cagen

Houston, Texas
Yerachmiel (Itzy), 24, is quadriplegic

The accident happened on Itzy's second birthday. He was playing in front of our house when he was hit by a car; the driver never stopped. We still don't know who did it. When a doctor at the hospital said Itzy might not make it, I told him, "You don't know that. You're not God." I had faith that he would wake up, and he did. It was a miracle.

Nothing was the same after that. Itzy is quadriplegic and he can't breathe for more than about 45 minutes without a ventilator. For the past 22 years someone has always had to be with him to make sure his airway stays clear and to help him dress and clean himself. We have one day nurse and two night nurses, and they help us so much; they're almost like part of the family. Still, we don't have real privacy. It's kind of like having guests stay with you for a long time -- no matter how close you are to them, you never feel totally relaxed.

On a typical day, one of the nurses wakes Itzy, gives him a bath, feeds him, and brushes his teeth. Then the nurse or Stuart or I take him to Houston Community College and sit with him during his classes and take his notes. He's studying to be a film editor but he'd really love to be a sports announcer. He could do it; he just has to wait to speak sometimes until the ventilator gives him a breath. When he doesn't have school, he spends time talking to friends on the computer by using a special mouse that he controls by moving his head.

People may simply think of Itzy as disabled, when in fact he has abilities that many of us lack. He has a lot of insight into people and a unique ability to make everyone feel comfortable around him immediately. You don't see that every day.

Watching over Itzy means that Stuart and I don't have much freedom. We never go out. We could if we really wanted to, but we'd have to find someone who's qualified to stay with him. People might wonder if that bothers us, but we never feel like caring for Itzy holds us back. It's such a privilege to have him. He has changed our world, but he has also changed the way we see the world. Stuart and I don't take anything for granted because we realize how important it is just to be able to move a finger or breathe on your own. We do worry about Itzy's future, even though we've arranged guardianship for him should something happen to us. But right now the most important thing is to find ways to make his life better and increase his independence. Stuart and I stay on top of all the new technologies and therapies. We really just want Itzy to be happy. Isn't that what every parent ultimately wants for her kids?

Originally published in Ladies' Home Journal, November 2011.

 

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