 Cathy Ludlum of Manchester has a neuromuscular condition called spinal muscular atrophy and has been in a wheelchair since she was a child. She and other advocates for people with disablities are fighting against an effort to allow doctors to help terminally ill patients end their lives. (JOHN WOIKE / HARTFORD COURANT / May 13, 2010) |
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A mom's love: Woman has devoted life to caring for brain-injured daughter
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ROCHESTER — A few years back, hundreds of bikers gathered in Representatives Hall in Concord to protest a proposed helmet law.
Ellen Edgerly, 51, an advocate with the state's Brain Injury Association, was sitting in the middle of the room, a lone voice in a sea of leather and wild beards, when a lawmaker asked if anyone supported the change.
"She stood up, passed all of these tough guys, and testified about brain injury and what it means," says Steven Wade, the association's executive director. "It took a lot of courage."
"Sometimes," Ellen explains, "when I go into Concord and speak in front of the Legislature, I'll always say to them, 'My name is Ellen Edgerly and I work as a community organizer for the Brain Injury Association.' But then I'll say, 'More importantly I'm the mother of four children, one of whom sustained a serious brain injury, and her name is Sara Edgerly, and this is why I'm here to talk to you.'"
Ellen's story isn't one of tragedy. It's instead about how, out of tragedy, grows a strength and power of perspective that family, nurses and friends say serve as an inspiration to others.
On Feb. 2, 1992, Sara, then 11, her twin brother, Rolly, one of his friends and their father, also named Rolly, set out to enjoy a day on Merrymeeting Lake in New Durham. As they crossed the ice to find a place to skate and go fishing, their Bronco crossed a pressure ridge and went under.
Everyone but Sara managed to escape. She was trapped in the vehicle in frigid water for about 40 minutes. The life of a soccer- and clarinet-playing girl with her own paper route turned into one dependent on round-the-clock medical care and a team of nurses that takes its cues from Ellen.
John Huff/Staff photographer Sara Edgerly, who sustained a brain injury as a child, is cared for by her mother, Ellen. |
Ellen recalls that winter day with a poise practiced by years of telling her story.
"Ask any family for the exact date and they will tell you, because that was the exact date they started their new life, a different life than the one they once knew," she says.
Before the accident, Ellen, who lives with Sara down a dirt path in a rural section of the city, was fairly quiet. She had a part-time job delivering mail. And though active in her children's lives, she could be found sitting in the back of PTA and Girl Scout meetings.
"I was never the leader," she says. "But as a result of Sara's accident, since day one I've always had to advocate for her for necessary support and services. So I became an advocate. It was not something that I planned on doing. That was not my lifelong dream, but as a result I enjoy what I'm doing because I'm not only helping Sara, but I'm also advocating for people with brain injuries and disabilities."
John Huff/Staff photographer Rochester resident Ellen Edgerly talks about her relationship with and the time spent caring for her daughter Sara. |
"Some people felt the school was not a hospital and she should not be there," she says.
The years also have brought battles with insurance.
Sara's room is decorated with paintings she has created with the help of a device and a nurse. A dream catcher hangs over her bed, and the bubbling of the fish tank competes with her favorite daytime dramas on the television. There's a computer that connects her to the world of Facebook, which a nurse helps her navigate.
Between the oxygen tanks, medicine, a binder chronicling daily medical needs and a specialized bed, the space resembles a hospital room.
Once the bed malfunctioned and needed to be replaced so it could enable Sara to lay down with her head lower than her feet. She has to lay like that every six hours for nearly an hour while wearing a vibrating vest so the fluid in her lungs, which were heavily damaged in the accident, can be released.
The insurance company wouldn't pay for a new bed that could put Sara in the position because "they said that was an option," Ellen recalls. "I actually had to go through two months of work, telephone calling, finally talking to the medical examiner from Cigna just to justify that you need to get a hospital bed like that for her because if you don't she's going to be in the hospital with pneumonia and it's going to cost twice the amount."
Some families, Ellen adds, don't have an advocate with the energy or knowledge to get what loved ones need.
Today, life can be a blur for Ellen, who is divorced. She works at least 40 hours a week for the Brain Injury Association and logs another 32 across Saturday and Sunday providing care for Sara. Sometimes she has to use vacation days when one of the nurses isn't available. She's come to expect working 48 to 72 hours straight around Christmas when help isn't available.
John Huff/Staff photographer Rochester resident and her daughter Sara Edgerly. |
"She's never left her. Never," he says of Ellen's commitment to Sara. "No matter where we were, she'd sleep on a chair, sleep in the waiting room, even when they said she should leave. She would call us because she felt like she was neglecting to us."
Rolly says that's never been the case.
"She's always holding birthdays" for her children, including daughters Emily and Nicole, and four grandchildren. "Christ, I'm almost 30 years old and she still holds birthdays for me."
There was a time, especially after the accident, that Ellen felt sorry for herself. But those days are long gone.
"Where I stand now is I'm very grateful that when I go to bed at night my head is on my pillow and it's not on a hospital cot at one of the hospitals and that Sara is at home with me. I went two years without having Sara in my home and that's not a good feeling. You want all your children in the same house," she says. "I also have found, probably in the past six or seven years, that before I get out of bed that I always think of two or three things that I am grateful for. They would be that I'm breathing, or that my other children are doing fine and they're sensitive because of what they had to experience."
Kathy Sessler, a nurse and real estate agent, has known Ellen for about 20 years.
"She struggles every day but you would never know it," she says. "Every time I have a bad day I have to turn it around because I'll go out with Ellen that night."
Kathy's husband, Rick, says Ellen's ability to see the good in life inspires him.
"Having fun when you have everything is easy," he says. "Having fun when you don't have everything, that's the real trick."
John Huff/Staff photographer Nurse Robin Peacock shows some of the medical equipment needed to care for Sara Edgerly. |
Ellen plans to write a book about her journey with Sara, and if she can she wants to finish it before Oprah Winfrey leaves her current show. Sara loves watching Oprah, and Ellen wants to share her story.
"If I had this book complete," she says, "maybe it could be pushed for me, and if I could just sell enough where I'd have this house paid off so when I pass on, Sara would have a place to live."
Ellen catches herself.
"I know it sounds ridiculous," she says. "Everyone want to write books. It would be about Sara's story but also about brain injury. Hopefully a family member who would read it would realize there's life at the end of the tunnel and life isn't over once a loved one sustains a brain injury, and there's a lot to be said for that. I've heard people tell me different things — that maybe this was the life plan all along. I don't know. That's heavy and our God would never wish anything like this on a person. But maybe it is a teaching experience, I don't know. I wrestle with it all the time but I always tell Sara thank you for being the person she is because I don't think I would be doing the work that I'm doing."
It's been 11 years since Ellen started working for the Brain Injury Association, which in 2005 earned her recognition from Gov. John Lynch for building a statewide network of 400 family advocates.
Four years ago she started organizing an annual conference that connects and doubles as a retreat. These days she coordinates the efforts of support groups for families impacted by brain injuries.
Ellen says she's learned over the years that she needs to also take care of herself. But she quickly returns to her life's work: making sure communities have resources to help people with brain injuries and social stigmas are defeated.
"I don't think what I do is any different from what any other mother would do," she says. "There's nothing like a mother's love for a child."
With that, Ellen is determined to connect her daughter with a computer invented for the military that uses laser technology, so by using her eyes to direct the cursor on the screen, Sara can use words to communicate what she's thinking. There's also some concern, Ellen says, that when her ex-husband retires, Sara will lose her insurance and will have to rely on Medicaid.
But then there's the dream.
"When we win Powerball ... we're going to have a house on the ocean," Ellen said. "And I told her it's going to be right where there's a lighthouse so the nurses won't even have to turn the light on because the beacon's going to go right into her window."
Until then they'll be spending days this summer at Baxter Lake, waiting on that dream. That, she says, is "what makes it fun."
John Huff/Staff photographer Rochester residents Ellen Edgerly, left, and her daughter Sara. |