Updated February 6, 2008    URL is www.parlorcity.com/secop/mark.html

In Memory of Mark and Scott

After many years on the web, it felt like I had the skill to put up this memorial to Mark and Scott. They aren't my relatives, but they are a part of me. The last name doesn't matter. If you knew them, you'll recognize them.
Their lives were spent in New England, but their story is the same all over the world. Mark and Scott had Muscular Dystrophy.

Mark with several of his cousins in 1986.

We moved into the house behind Mark when I was a bride. Our back yards ran into each other. Mark's mom and I became best friends. I hadn't been around any babies before, or toddlers as Mark was then, so he was a unique fascination to me. Although I had book training in child development, I hadn't watched a child grow up.

Mark was diagnosed when he was about four, and Scott was already born. I believe Mark was unable to learn to ride a tricycle, which finally prompted the doctor to do further testing. We were already out of New England by then, as my husband had left the US Navy. I felt helpless and useless.

There had been no history of MD in the family, in fact it was a mystery to all of us then. All we had known was the telethon. I had worked on that when I was 16, but I hadn't thought about someone I loved having MD.

Scott, the younger brother, was diagnosed with MD not long after Mark was, but Scott's disease progressed more rapidly. Their rural elementary school principal made accommodations for the boys, before there were laws, just from his own common sense and compassion. I have not heard of a more thoughtful person in my lifetime.

When Mark could no longer climb stairs, his entire class was moved to the main floor of the school. Eventually their parents purchased, with the MD Association's help, a wheelchair-equipped van for Mark and Scott, and the parents added an above-ground pool. Their house was all on one floor, and the bedroom was expanded so the boys could entertain each other. As time passed, they needed to be turned frequently at night. Their mom says even today she would be glad to turn them if she could have them back.

Another plus for the boys was that both their parents were there for them and both loved them enormously. Statistically, when something like this happens, the parents' marriage disintegrates. Even now, their parents are still married.

Mark was very aware of every aspect of his disease. He was wise beyond his years. As he lost control of his facial muscles, people who didn't know him sometimes thought he was retarded, but they could not have been more wrong.

Meanwhile, the area they lived in hit a bad economic slump. The doctors pulled up stakes and moved away. Medical care became extremely difficult to obtain. The boys had to make grueling trips to Boston to see a specialist, but while there they saw all their relatives and cheered for the Red Sox.

Here's Scott outside the White House in 1971. He and his family visited us in Washington D.C.

Mark entered high school. He participated in everything he possibly could and also kept his grades high. He took a few college courses too. Everyone loved him. Scott was equally loved. As they grew weaker, there was still no nearby medical help. Eventually there was a crisis, and Scott died in the ambulance trying to reach a hospital.

I can't blame the doctors for not being in the right place. It was, after all, Muscular Dystrophy that was the cause of death. Still.... When I think of my friend in that ambulance.... There is nothing we can ever say or do to make that go away for her. When I think of Mark back in his room, with his brother's empty bed, I don't know how any of them kept going.

Mark is gone now too, and the disease is not conquered. All I know is that we have to make each day count, we have to be kind to one another, we can't judge by appearances... and I'm very angry that kids ever have to suffer.

Mark with Kashmir, 1986

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Empty Arms is a site for parents who have lost a child. They let me be an honorary member, to bring this ring information to your attention. The lettering on this graphic reads "The Empty Arms Ring, Honorary Member."

 

Index of my grief pages
Main Grief Page	Erin's House
Books and Bookstores page is lost. Just use Google.	A Memorial to Mark and Scott you are here
My father and others	My Grandma Lived In Gooligulch review and art is lost
Meditations	Index of Entire Site

You can visit my overall Tentative Times index
or go to my personal pages index.

I'm Sandra Weinhardt. Email me at secop@parlorcity.com