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 Inspirational Stories

The unstoppable Eileen Lee
She takes care of her disabled son and fights for the parents of other children.
by Don Aucoin, Boston Globe, 10/1/2002

The pressures they live with every day are evident in the faces of the people gathered here in a small hotel conference room - but only if you look closely, past the smiles and chin-up banter.

In this, they take their cue from the woman who moves buoyantly about the room as she steers a fund-raising seminar, distributes literature, slaps nametags on lapels, and displays a diaper suitable for a disabled child. Eileen Lee is their unmistakable leader and, just as unmistakably, one of them.

Like every person in this room, Lee made the decision to care at home for a child born with the daunting combination of mental retardation and severe medical problems. She too has had to battle to find the right school, the right nurse, the right medical equipment for her child. She knows about sleepless nights, sudden hospitalizations, feedings through a tube, feelings of anxiety and isolation. Having traveled from confused parent to

forceful advocate as director of Family Partnerships of the Northeast, a program funded by the state Department of Mental Retardation, Lee devotes her formidable energies toward ensuring that these families don't feel as alone as she once did.

''She can relate to what you're saying. She's been there. She's doing that,'' says Chuck Ouellette of Dracut, who's son, Robert, has cerebral palsy. ''She's a shoulder sometimes for people to cry on, someone to call up and say, `You won't believe what happened today. '''

Now, Lee is facing a new medical challenge in her own home. Her 14-year-old son, Michael, is suffering from renal failure and needs a kidney transplant. Eileen Lee may soon need to rely on the support system she helped to build.

Determined parents

In 1987, when Lee was six months into what she knew was a high-risk pregnancy, a doctor asked her: ''So, are you considering an abortion?''

''She was so blase, like she was offering me a cup of coffee,'' Lee recalls, still seething as she recalls the conversation in her Methuen home. Prenatal testing had established that Michael would be born with one kidney, and the chance of renal failure at birth; it had not shown that he would be born with a cognitive disability and only one eye, the latter caused by a rare condition known as anopthalmia. He would also suffer from a weakened immune system, asthma, and scoliosis.

Then, as now, some parents of mentally retarded children with severe medical needs opted to have them cared for in a pediatric nursing home. Lee and her husband, Philip, never considered it. ''We just wanted to get him home,'' Eileen, 47, says firmly. ''It was the way it was meant to be. He's a part of our family. I would be just devastated if he wasn't here.'' (However, she does not fault parents who choose another course. ''We struggle not to be judgmental,'' she says. ''I don't think you can judge somebody until you walk in their shoes.'')

For all their determination to care for Michael at home, the Lees were not prepared for the medical and emotional challenges that immediately beset them. When Michael was 2 days old, his kidney began to fail; by 8 days old, he had undergone his first operation. When they brought him home from the hospital at two months, they had no nursing care, no physical therapy, no support beyond what family members could provide, and no clue about where to turn. Michael vomited whenever they tried to feed him. He was in and out of the hospital that whole first year. When he was 1, he required the surgical insertion of a special feeding tube. After the operation, he ended up in an intensive care unit and required blood transfusions.

Over the next several years, he would require several more surgeries. Even when he was home from the hospital, it was a constant struggle to keep him free of infection and to get him to eat solid food. The family arranged for visits from nurses but had to cope with the loss of privacy that entailed. Meanwhile, Philip and Eileen Lee also had another child to care for, Kristina, three years older than Michael.

As Michael grew older, the medical issues were joined by educational ones. (His mental retardation is classified as moderate.) Eileen Lee relied on an advocate to navigate the bureaucracy and get her son the services he needed in school; then, as she learned how to work within the system, she became an advocate herself. All the while, she kept thinking she would like to put her knowledge to work for other families. Five years ago, she applied to become director of Family Partnerships of the Northeast. She got the job, and families from Medford to Methuen got an unstoppable advocate.

''She has a 360-degree view of how the world looks,'' DMR commissioner Gerald J. Morrissey Jr. says of Lee. ''She has a tremendous resilience.'' Lee's program is one of five around the state, each of them run by a parent like Lee who draws on firsthand knowledge of the system. The programs serve 232 families statewide on a total budget of $350,000.

As Lee talks at her dining room table, her words are periodically interrupted by cries of ''Yes!'' from Michael. He radiates cheerfulness as he sits at a nearby desk, intently playing a computer game featuring trucks. Like father, like son: Philip Lee, a Methuen firefighter, drives a truck in his spare time.

''Daddy!'' Michael suddenly cries, his face lighting up. ''Daddy's home!'' When Philip Lee walks in the door, Michael greets him with a hug and a needling reproach: ''Hey, you. I missed you this morning.'' Philip sits down at the table and grins at his son.

Michael has recently developed an infection in his one kidney, reducing his renal function. A transplant will soon be necessary, so Philip, who turns 54 today, plans to donate one of his kidneys. ''I got two. I'm going to give him one,'' he says matter-of-factly. ''I'm just going to give the kidney and take care of that problem.'' He looks across at Michael, and adds, ''Right?''

There is a resiliency of spirit in the Lee household, but there is also an air of urgency these days as they cope with the new medical complication. At one point, Eileen takes Michael's temperature; then she immediately takes it again. ''I know, what are you going to do with me?'' she says to Michael. ''What a pain I am, huh?'' He gives her a smile. He never seems to be without one.

''There's times when I'm really overwhelmed,'' Lee admits. ''But I get so much back that it's really rewarding.''

A network of support

If there is one thing Lee learned from caring for Michael, it is that information is oxygen for families like hers.

So she convenes monthly meetings of a group called the New Hope Coalition, an outgrowth of Family Partnerships, and makes sure their nuts-and-bolts questions are answered. On this recent weeknight meeting, several speakers describe how to mobilize volunteers and attract media attention to raise funds for medical equipment for a disabled child, such as a van with a wheelchair lift. Lee tells the two dozen parents to affiliate with a nonprofit organization and writes other tips on a board: ''Utilize friends and family. Get a team. Organize, organize.'' Other workshops organized by Lee have featured experts on financial and estate planning for parents of special-needs children, relaxation techniques, sibling issues, and networking.

''Eileen has been the driving force in bringing this together,'' says Susan Talbot of Malden, whose 11-year-old daughter Jessica has cerebral palsy, and who sits on the parent council that oversees Family Partnerships. ''There's such a need for families to be connected; we're dealing with life-and-death issues.''

Lee works directly with about 40 families. If necessary, she attends meetings of a child's ''team'' - his or her teachers, social workers, physical therapists, nurses. If a school is not meeting a child's needs, Lee will spell out those needs to school officials using an approach she describes as ''an iron hand in a velvet glove.'' If a family needs respite care, Lee makes sure it gets it. For all families in the coalition, she maintains a list of medical equipment other families no longer need and makes sure it is offered to families that do.

But her broader role is that of counselor and friend to families who live with constant stress. Lee has spent long hours on the phone with parents who are going through a divorce. She has also been there for support when the worst has happened: Several children of coalition members have died in the past several years. One of them was Reina Torres's son, Ronny, who died two years ago of mitochondrial disease at age 12. Torres, of Lawrence, has two other children, Astrid, 16, and Ingrid, 12, who also have mitochondrial disease. Lee helped her raise $23,000 for a handicapped-accessible van. ''She knows everything we're going through. She helped me a lot,'' says Torres. ''We talk a lot by phone. We just take care of each other.''

Jeanne Molloy of Methuen, whose daughter Shannon has cerebral palsy, says Lee helped her find a nurse, a physical therapist, and an adaptable seat for her daughter's stroller. Lee also manned the phone to organize a schedule that involved seven therapists coming to Molloy's home. ''It's absolutely not a job to her,'' says Molloy. ''Eileen was always there to reassure me, to say, `It will get better. You will get through this difficult time. '''

Now, Eileen Lee is going through her own difficult time. The Lee family spent yesterday with doctors, who told them that Michael's renal failure is worsening. Next Tuesday, Philip Lee will undergo a complete medical workup that will be the first step toward donating his kidney to Michael. As she confronts the medical challenges facing her family, Eileen Lee is getting phone calls from clients-turned-friends who are saying to her what she has so often said to them: ''I'm here if there's anything you need.''

''I have two families now,'' she says. ''There is no doubt that everyone in my group will be there for me when I go through this with Michael.''
 

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