photo by Nell Mednick

About Survivor Mom

I am the surviving, 75 year-old mother of Peter Weisman who died of Duchenne muscular dystrophy in 1980. I wrote a book called Intensive Care: A Family Love Story about the experience. The book is about how a family struggles and often thrives, even under the constant threat of death. This blog is my cyber-sequel. From a survivor's vantage point, I'm going to blog, in honest detail, about how life was then, and how it is now. Expect to feel better.

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Getting into a wheelchair; making the best of a really bad thing

Jan 07, 2013

Peter had to get into a wheelchair. He was falling to his knees, and cracking the back of his head on the floor. These falls were so painful and frequent that he had a permanent egg on the back of his head. I couldn’t stand the agony he was putting himself through. Still, he soldiered on. The more he fell, the more it hurt, the more he continued to insist upon walking, and the more I found myself longing for him to give up the struggle and accept the wheelchair.

It didn’t happen easily.

We bought a junior-sized chair – Pete was only seven—and parked it in the corner of the living room. (I think I knew from the time he was diagnosed at two and one-half – an early diagnosis - that he had a swift case of Duchenne.) The back and seat were colored an in- your-face orange, as gaudy as a celebration. Peter was not impressed. I knew better than to beg and plead, but I didn’t have any better ideas. It was Adam, Peter’s nine year-old brother, who literally rode to the family’s rescue, seated in Peter’s wheelchair.

“Push me,” Adam said to Peter.

For two days Peter pushed Adam around the house in the wheelchair. Then Adam suggested that they take turns; sometimes Peter would push Adam, sometimes Adam would push Peter. In an instant, Adam had changed the worst thing Peter could imagine into a game.

Next, Adam moved the game outdoors, going farther and faster each day. By the second day, Pete and Adam became the most popular kids on the block, offering free rides on what Pete was now calling “Wheelie” to the neighborhood kids. Everyone wanted a turn. For the grand finale, Adam decided to take Peter on a thrilling, high speed trip down a very steep hill, with Peter belted into the seat and Adam riding the struts. That did it.

“Can we do it again, Adam?” Peter begged. “Can we do it again?”

I breathed a sigh of relief, even as I knew that the worst was yet to come.