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"We learned that there is nothing more important you can do for a child than loving, caring, and supporting them. And for that we received back a lifetime that looks very different than any we could have ever imagined, one in which we are stronger, more patient and more prepared to face the future firmly grasping what the really important parts are and letting the rest fall to the wayside."
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Ben’s Legacy
Stephen Joseph
Dear Editor:
I have just come downstairs after having read the latest edition of the DADS Newsletter. I like to read while I’m lying in bed. My daughter is sitting in front of the TV watching something on Nickelodeon while whittling away at a stick she thinks will help her walk better during her bout with tendonitis. My wife is out job hunting and getting goodies for tonight’s supper. The dishwasher is running in an effort to clean up some plates from tonight’s meal. Sounds like a pretty normal picture of a pretty normal family. It is, but there is one very important piece of the picture missing -- my son Benjamin.
Ben passed away this summer after a four year struggle against cancer and the after effects of its treatment. According to his doctor, Ben actually won his battle against cancer, but he lost his life to the treatment. Ben had a brain tumor (medulloblastoma) and was treated with chemotherapy and radiation in accordance with a national protocol on which he was placed. Unfortunately, Ben’s brain proved unusually sensitive to the radiation treatment and began to deteriorate in what was described to us as "radiation necrosis," that is, parts of his brain slowly shut down until such a point was reached that his brain could no longer sustain life. As far as we know he is the only child on this protocol to have experienced this problem.
Ben was operated on for his tumor in April of 1992. Immediately after the operation Ben could not speak. He would eventually regain his speech in June, not through the help of the speech therapists, but through his own will and determination. This was just the first sign that Ben was going to be a little different.
Ben never walked unaided after his operation. He was in a wheelchair for the next four years. This did not stop Ben from getting around though. Especially at home, if Ben wanted to go somewhere or get something, he would simply scoot around on his backside to get what he wanted. When stairs were an obstacle, Ben would crawl up the stairs. This would scare us to death for two reasons: first, his balance was never very good because of where the tumor was located, and second, he would not let us know what he was doing; he would just do it! There is nothing more heart shaking than to see your son two thirds of the way up a flight of stairs wobbling back and forth as he made his way upward, especially when you thought he was watching the Roadrunner on TV.
Ben had many blood draws during his last four years. This presented an especially difficult problem because, as we used to joke, "Ben has no veins!" One night several doctors at a major university hospital in Boston tried over four hours to draw blood without success for a very necessary test. They finally gave up. Ben had to endure hundreds of these episodes because of the medications he was on to control seizures. The seizures came on as another side effect of the radiation treatment. To make matters even more exciting, as if they weren’t already, Ben had a tendency to metabolize his medications in an unusual way. He would be given large doses of anti-seizure medication after particularly bad seizures, and there would be no sign of the medicine in his blood stream an hour or two later. Several days later, after finally achieving the desired level of medicine in his system, he would become toxic or overdose on that same medicine.
Toward the three year mark, Ben began to lose his sight. His hands shook so badly he could hold nothing steady. He was on several different levels of several different medications. He had two "strokes" (so called because the symptoms were similar but were probably portions of his brain dying) and many seizures. He was often tired and did not like school very much. All in all it was a pretty depressing picture, no? No!
As a parent you never want to see your child go through these kinds of agony. Many times I wished I could take the needle for help or give him my legs to walk on, but Ben did not need them. Most of the time (he wasn’t perfect, though I like to remember him that way) Ben would accept patiently the repeated attempts to borrow his bodily fluids. He loved to draw and did so incessantly even though his hands were never steady and his grip on a pencil or crayon were precarious at best. He insisted on taking his socks off even though it was a major struggle for him. He would even reward us by flinging them across the room and then howl with delight when we "discovered" what he had done.
These are but a few memories which come to mind and which build the foundation for the legacy that Ben left us. His mom and I are changed parents. We learned what courage really is through the actions of a child. We learned that you never quit. Through being with Ben during his step-ups and set-backs, we learned that you can do anything you set your mind to. We learned that there is nothing more important you can do for a child than loving, caring, and supporting them. And for that we received back a lifetime that looks very different than any we could have ever imagined, one in which we are stronger, more patient and more prepared to face the future firmly grasping what the really important parts are and letting the rest fall to the wayside. Ben may not physically be with us but we are still his parents, he is still our son, and we are still a family of four. Just as his memory and the effect he had on us, that will never change.
Stephen R. Joseph
126 East Hodges Street
Norton, MA 02766
Published in "Fathers Voices," Exceptional Parent magazine, September,1997.
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