unstoppable Eileen Lee
She takes care of her disabled son and fights for the parents of
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.
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
''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
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
''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
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