Dawn

My mother was diagnosed back in 1976 at the age of 31 as having Scleroderma by a Rheumatologist in Chicago, after several months thinking all she had was Arthritis. At the time not much was known about the disease, and I'm sure whatever my mother did know, especially the mortality issue, was kept a secret from my brother, age 6 and myself, then 9. The next 6 years of my life was spent helping out around the house, and assisting my mother with some of the things we take for granted, like shaving your legs, and washing your hair. I look back now and think of how I resented doing those things while my friends were out having fun. Oh, how I wish I could do those things for my mother now!!

My mother was a remarkably strong and independant woman, she didn't like people waiting on her or feeling sorry for her. The hand contractures were present early on, and she still maintained her job as a school bus driver. I remember how her hands would hurt in the winter, and the ulcers that would form on her knuckles with the slightest bump. I can remember my father putting special handles on the phone and doorknobs , and the special eating utensils she used to preserve her independance.

I remember her last days like they were yesterday. December 10, 1982, my parents 16th anniversary.... my mother wasn't feeling well that day, so they wouldn't go out celebrating that night . I remember her sitting on the couch having a hard time breathing and being very weak. My dad wanted to take her to the hospital, but she was adamant she didn't want to go. Aroung 10 pm she was so weak she couldn't even hold her own head up, i remember her saying she couldn't breathe when she lay down. It was all she could do to sit up and breathe. My dad called an ambulance, as she couldn't contest any more. It seemed like forever the ambulance was in our driveway, as they attempted to find a vein to start an IV. In the ER my mother had to be intubated and put on a Ventilator. She spent the next 5 days in ICU in our local hospital. I lived there in the waiting room the entire time, the nurses were good to me and let me spend time with her a much as they could. She was able to write down things an a tablet to communicate with us, and appeared to get stronger each day. The doctor even told my brother our mother would be home for Christmas. Then things got worse, she had slipped into a coma and the local doctors didn't know what else they could do. My dad insisted on her being transfered to Chicago for further care. She spent the next 5 days in ICU in Chicago, I was able to see her only once. She never regained consciousness,her organs began to fail, an EEG showed brain death. It was decided to remove the life support. That was December 20th 1982. The worst day of my life.

When the movie" For Hope " aired, I watched in awe as everything Hope was going through, was a mirror image of what my mother went through. It was like dejavue.

As a mother now myself, I think of the pain she must have felt, knowing she was leaving behind an 12 year old son and a 15 year old daughter, both who still needed a mother. She wouldn't live to see her children grow up, graduate from high school, and make lives for themselves, she wouldn't know her grandchildren, and they wouldn't know her. Her memory lives on in our stories of courage and strength.

To know her was to love her.

In loving memory of my mother......

CHARLYN MARIE (MARCEAU) BIGLER 2/19/45---12/20/82

Dawn McKenzie dawnmckenz@aol.com

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