How I Lost My Sons, But Not My Mind - Rosalie Ferrer Kramer

How I Lost My Sons, But Not My Mind Rosalie Ferrer Kramer

My sons, Marc and Danny, were 5 and 2 years old when they were diagnosed with Duchene's Muscular Dystrophy. That's when my husband, Mel, and I were faced with the sorrow of having two sons whom we knew would not live a full life. How would we care for them without neglecting their seven-year-old sister, Iris? The answer to that question was the principal problem that arose during our marriage. Duchene's Muscular Dystrophy is a wasting, genetic disease, characterized by progressive weakness and degeneration of the skeletal or voluntary muscles, which control movement. The muscles of the heart and some other involuntary muscles are also affected, it is the most common form of Muscular Dystrophy, and it is fatal.

The Muscular Dystrophy Association in Detroit, Michigan gave us everything we needed to physically care for the boys. But, oh how I wish we had a support group to help us in the 1950's and 60 when nothing like that was available. My husband and I could have used the camaraderie of others who also knew they would have to face the inevitable. It was always on our minds. Today, in San Diego, the Muscular Dystrophy Association has 13 different support groups.

My eldest son, Marc, was a big boy. Indeed, when he died, he was over five feet tall and weighed about 155 pounds. When Marc was eleven years old it became impossible for me to take him from his wheelchair to his bed. When my husband's hours as a realtor kept him away from home more, and my congenital spinal condition worsened, hands-on daily care for my sons became impossible. So, we had to hire household help. It seemed our entire lives centered around caring for our ill sons, giving our daughter the attention she deserved, and earning enough income to afford an aide.

My mother and my sister, gave me little support, and then condemned me when we were forced, by physical exhaustion, to place our sons in a nursing home. Four months after doing this, my sons died (three days’ apart, at 19 and 22 years of age).

I could not find solace anywhere until I began writing down my grief and fears. This then became a lifelong pastime that rescued me from despair. My writing eventually developed into a book, Dancing in The Dark: Things My Mother Never Told Me (PublishAmerica,2001) It was written 25 years after my sons' deaths and describes my long struggle to keep them alive, as well as the many problems I encountered dealing with my mother and sister.

I do not write here to convey the long tale of my long struggles, but rather to encourage anyone who is grappling with similar problems to join a support group, or at least, put their feelings in writing. Either or both options will keep you from beating your head against the wall in frustration.

Certainly, everyone does not have the ability to write poetry or be published, but, from my experience, writing helped develop my coping skills. Journaling lets your mind flow freely, to put things down you would never say to anyone, except, possibly, to God.

I also suggest that people who are grieving find a support group that suits their needs. It may take some time to locate the perfect one, but try. You need not suffer alone. Writing is a lonely comfort, but it helped me. However, a support group associated with my children's disease, which could have provided the resources to help us through so many difficult times, would have been even better.

In the course of rearing my sons, I met numerous parents of handicapped children at the school my sons, Marc and Danny, attended. Most of their children were handicapped by Cerebral Palsy. A few had Spina-Biffida, while others were victims of Cystic Fibrosis. My sons were the only ones who were afflicted with Muscular Dystrophy.

Numerous support groups are now available everywhere today. All you have to do is call or E-mail the local or national agencies, which treat your child's affliction, to get a list.

Rosalie Ferrer Kramer began writing at the age of 65. She is a regular contributor to the Rancho Bernardo Sun, and a sometime contributor to the Fallbrook Village News, and the San Diego Union Tribune. She is a member of the National League of American Pen Women, and has taught a writing class under the auspices of the Continuing Education Courses program associated with San Diego State University. Recently, she has become a stand up comedian, presenting her senior program, “Laugh Along With Rosalie,”all around San Diego County. For more information, contact the author at www.authorsden.com/rosaliefkramer, or write to her at 17840 Via Gracia, San Diego, and CA 92128

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