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Hope and the Muscular Dystrophy Telethon

Hope and the Muscular Dystrophy Telethon

Hope and the Muscular Dystrophy Telethon 

Comedian Jerry Lewis offered hope to families with relatives suffering from Muscular Dystrophy. He died Saturday at the age of 91. When I was younger, I watched the telethon with rapt attention; for whatever reason, I was drawn to it and the cause. At age 9, I held my own Muscular Dystrophy carnival. In high school we watched the local fundraiser live, in a mall. I went to a college that was handicapped accessible, and one of my classmates had MD. I even saw him on the telethon my junior year of college.

When it Hits Close to Home

When I gave birth to my twins in 1998, my daughter Stephanie was born with a neuromuscular disorder, similar to MD but not, there is still to this day, no diagnosis.

As we struggled to care for her deteriorating body, the telethon held a different meaning for me. This time what they did, the research and care of those afflicted, had relevance in my life. I will never forget the first time I called during the telethon to donate; I could barely speak to make my pledge.

It’s All About Hope

Though we didn’t have a diagnosis of Muscular Dystrophy and was unable to utilize the facilities, I still donated, because I understood how difficult it was to care for someone whose body was dying. Physical therapy, doctor’s appointments, medicine, nursing care, hospice care. I would watch the telethon, as long as I could stand it, crying because it as so close, because I felt the hope, that some day, all these undiagnosed diseases would have a name. Because with a name, there was a gene and with a gene a treatment could be researched. Hope.

Some day other parents wouldn’t have to live through the pain, anger, sleepless nights, nursing shortages, as they watched their child suffer with breathing issues, oxygen shortages just before the weekend, or hospital stays.

Jerry Lewis Passes Away

Jerry was the spokesperson for the Muscular Dystrophy Association and no one knew the reason why he did this. Why he stayed up for three days over Labor Day weekend, every year. Only his first wife knew. It was a remarkable devotion to a cause and his death makes me sad. It’s a reminder of my daughter and her struggle, of all the times, I searched for resources to assist with finding medical equipment or nursing help. What the MDA does for so many is make it easier for families to care for their loved ones and most importantly it offers hope that one day a cure will be found. May he rest in peace. He will be missed.

To donate – MDA.org

 

 

 

Bittersweet is Life

Bittersweet is Life

On March 29, 1999, I watched my daughter Stephanie Paige Steines take her last breath. She was born with a neuromuscular disease of unknown origin. It is something that stays with you the rest of your life, only time makes it hurt less; I no longer cry starting a month before her death, and that day, sometimes it passes without recognition. I always remember though.

stephi 001

While her health deteriorated, her muscles became weak, her breathing difficult, her eating nearly impossible, I had a weird dichotomy of experiencing the other side, the wonder of her twin, my daughter Kayla, as she grew stronger, hit her milestones, thrive.

But with each milestone achieved, there was something not completely right, there should have been two reaching these ‘normal’ goals.

After Stephi died, there was always a whisper of sadness through everything that Kayla did and though I promised myself that Kayla would never have to live her life because her sister died, she’d only have to live her life because Kayla was, the whisper, the hint, a piece of the whole was always there.

I hadn’t realized Kayla experienced that emptiness until almost 17 years later. Seeing other twins at school hurt, she wanted to scream out, “I’m a twin too!” I will never forget the time I was in a room with four other adults, and three of us gave birth to twins. As the two moms spoke of their twin issues, I wanted more than anything to chime in. But to talk of the loss carries a dark cloud over the conversation and it’s not always the right time or place.

The loss is not just my loss, it’s also Kayla’s. Even though she were 11 months old when Stephanie died, we both feel it especially during great achievements, a great moving forward, always knowing, someone else should be there too.

I feel it now as Kayla is ready to graduate high school, as she’s ready to enter college. I’m not just sad because my baby is all grown up. I’m sad because we are missing someone.

There is so much pride for all Kayla has been able to accomplish. Overcoming crippling anxiety, scoliosis, ADHD. She’s graduating with amazing grades, a high ACT score and was accepted into three colleges. She’ll be attending this fall on her way to full adulthood.

Time makes it less difficult and there are less tears, but it can never wipe away the sadness. I only hope I can make through graduation without the ugly cry.

100_0436Kayla 7th grade

 

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