"My sister Ellen passed away on June 21, 2015, ALS World Awareness Day. She was 56 years old. Ellen maintained quiet wisdom and humor even in the face of the serious trouble known as ALS.
Her illness and death brought a large family, from a variety of locations and life paths, together. Sure, we all loved each other, but our lives had diverged along different paths, usually crossing only on holidays.
Ellen gave us a gift of shared time together, with each member bringing their own particular strengths to a bad situation. It was a gift that will keep on giving. We have learned from her that we can count on each other when the going gets tough. It was that gift that inspired me to write this story about sweet Ellen.
Ellen was born the 6th of 7 children on Christmas Day 1959 in a small town in Massachusetts. Her life was a quiet one, her personality somewhat shy, hesitant, lacking in confidence. Her younger sister, Nancy, was born a year after her with Down Syndrome. Ellen and Nancy grew up together with Nancy always requiring attention due to her disability. When she was a young child, Ellen, too, wanted to be disabled and have crutches or glasses to show the world her issues. Nancy loved giving people funny names and the family started to call her sister "Ellie-pooh" as Nancy had called her.
The neighborhood was full of children in the 1960's. Kids made forts in the woods, played kickball in the street, rode bikes to friends houses, played outside after dinner. Ellen and her friends were happy when a new family, with three kids, moved into an adjacent house where woods had recently been. The new boy and Ellen became more than friends in high school and went to prom together where she was named Prom Queen. Later, they went to state college as students. They were known as the couple who were neighbors and friends from home. They married in 1981 to the unsurprised delight of their friends and families. They made their home in the same town and the same neighborhood they had both grown up in. Their life together seemed pre-ordained to be simple and safe, living the same lifestyle they both knew.
The young couple went on to have three daughters. The girls each possessed a unique blend of their parents' looks with light straight hair, blue eyes and slender build. As the family grew things changed and stress made its' way into their lives. Ellen found a job nearby and became a working mom. She and her husband loved their girls with discerning loyalty, providing direction and encouragement toward school and careers. Their Dad was a pseudo-Irish jokester and guitarist who faithfully coached his daughters sports teams and sang them to sleep at night. Struggles came and were fought. Life became more challenging for Ellen. Loyalty to family and a quick and dry sense of humor characterized her approach to each day.
In 2013, Ellen noticed a weakness developing in her left hand. It affected her performance at work. After numerous tests and appointments the diagnosis of ALS was made. Two years of gradual deterioration brought steady decline. Ellen's sister Nancy moved out of their home and passed away. The house became crowded with medical equipment. Her extended family came by more often. She became scared and did a lot of crying, worried about her daughters and her husband, money and death. At the time of her passing, her husband had become her singing personal care attendant and housekeeper. Her daughters had become women with careers and adult lives of their own. Life quietly passed out of Ellie-pooh on June 21, 2015 with four light colored heads resting by her side, murmuring words of love and encouragement. Ellen's life was remarkable for its unremarkableness. There will be a candleless cake with her name on it every Christmas day from now on in remembrance of a young life snuffed out and a family forever changed by the incurable disease called ALS."
- Judy Romano
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