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As reported by The Hartford Courant, October 31, 2005.

When Mom Gets Ill

Ask For Help, And Swear Off Guilt, An Expert Advises

By Kathleen Megan

As her nurse pushes medication from a syringe into her veins, Paula Stolinas settles back into a comfortable armchair and envisions the microbial battle in her body between the medicine and the cancer cells.

She feels lucky to have made it to chemo this day. The night before at home in East Windsor, her 4-year-old, Austin, woke her up, sick to his stomach. She comforted him and remained awake for hours, wondering what she would do if he was still vomiting in the morning.

"Oh, no, he's going to feel horrible, and he's not going to want me to go to chemo in the morning," she thought. Could she leave him sick with her mother-in-law?

Months ago, Mary Smith sat in her wheelchair in the Northwest Catholic High School gym in West Hartford, watching her son Jamie warm up with his East Catholic High School team. Smith, who spends much of her time sitting up in a hospital bed at home in South Windsor or in a wheelchair, has multiple sclerosis. She rested all day so she would have the energy to go to the game.

But now, the coach isn't playing Jamie, and she can feel her temperature rising in the already warm gym. The warmer she gets, the more her MS will flare, the fiercer the pain flashing through her toes and legs, the more labored her breathing, the fuzzier her vision. Her friend Patty Albert warns her, "You have to tell me right away if you need to get out."

"Unfortunately, my body doesn't have the luxury of being able to be upset," said Smith.

Stolinas, 30, and Smith, 43, are among an estimated 25 million women in the United States under age 55 living with a serious or chronic illness - including cancer, multiple sclerosis, lupus, diabetes and other conditions - while raising children, according to Kristine Breese, the author of "Cereal for Dinner: Strategies, Shortcuts and Sanity for Moms Battling Illness" (St. Martin's Griffin, $13.95).

Several years ago, when she was 35, Breese, a marathon runner, collapsed in her bathroom and suffered a seizure. When she came to and found her sister-in-law had called an ambulance, her first thought was, "I can't go to the hospital; the kids haven't had dinner."

When anyone in a family becomes seriously ill, it's a burden, but when a mother becomes sick - well, mothers just don't have time to be sick.

"In our culture, `sick' means weak, dependent and needing to take care of oneself. `Mom,' on the other hand, is synonymous with strong, independent and taking care of everyone else," Breese writes. "The two have nothing in common. In fact, it seems to us they can't coexist."

But "sick mom" is not an oxymoron, says Breese, who eventually had a pacemaker implanted to correct electrical problems with her heart. Her guiding principles for mothers facing an illness: Ask for help, and swear off guilt.

"Asking for help is a muscle; you've got to exercise it, so you can ask for it when your life depends on it," said Breese.

`Mommy Has A Boo-Boo'

When she turned 30 in May, Paula Stolinas' husband, Scott, joked that it would be downhill for her now. About a month later, on June 24, Stolinas was sitting by the phone, nervously awaiting a call from her doctor. At 2:50 p.m. the call came: The biopsy was positive. She had breast cancer. As she crumpled into tears, her 4-year-old son, Austin, came up to her in alarm.

"Mommy has a boo-boo," she said, trying to calm him. "Mommy has a boo-boo inside."

The diagnosis threw Stolinas' calm routine as an at-home mom who spent every day with Austin and Morgan, 2, into a blur of anxious phone calls and multiple doctors' appointments. In late July, she had a mastectomy, and now she is getting chemo every two weeks. She planned the chemo for Thursdays so that when she's feeling the brunt of the sideeffects (on Sundays), her husband is home.

Her hope through it all has been "to keep things as normal as possible" for her family. With the help of her mother-in-law, who lives in an apartment attached to their home, and her own mother, who lives nearby, Stolinas says she has mostly managed to do this. One or the other grandmother has always been there to help, whether in the first weeks after her diagnosis, through her surgery and recovery and now when she feels rundown from chemo. Her church, neighbors and friends have also helped.

And she and Scott have become a team. The cancer has definitely "added a layer of stress to our relationship," she said. "It's tough when I'm tired and crabby, and he's sick of hearing about chemo and cancer, but we've come to an agreement to deal with this together and help each other out along the way." He's always willing to do whatever needs to be done, she said, whether washing dishes, vacuuming or entertaining the kids.

"I feel very fortunate" to have so much help, said Stolinas, though as a mother it's sometimes hard to accept that help. But Stolinas soon saw that she needed the help and she had better take it when offered. "I can't be supermom and deal with breast cancer and do everything else," she said. "I have to let people help. It's fair to my husband, and it's fair to my kids. My kids don't want to live on peanut butter and fluff for the next few months."

From the beginning, Stolinas has tried to explain to her children in age-appropriate ways what they can expect. When she knew she'd be losing her hair, she told Austin she'd have to get it all cut off.

"That's OK, Mommy," Austin told her. "You know what? I won't even laugh at you."

Stolinas said the prognosis for a full recovery is excellent, and it has been good for her children to get used to spending time away from her. Still, she can't help but notice now when her kids slip up and call her grandma instead of mommy.

Being A Good Mother

Lee Tremback, an oncology social worker at the University of Connecticut Health Center who works with mothers going through cancer treatment, said that when they become sick, it's different from any other household member.

"There is a sense on their part that they just cannot let down their standards," said Tremback.

In support groups, she said, "We talk primarily about the fact that when there's a major diagnosis, you cannot expect yourself to continue at your previous pace."

For most mothers, she said, the priority is their children. She talks to them about how to find others to help them out with household responsibilities, so she has the energy for the mothering that only she can do.

"Anybody can provide a casserole or do laundry or give a ride - but her job is to love the children, to spend time with them, to have that very important intimate relationship with them," said Tremback. "That's the most important aspect of mothering."

Ruth Farber, who works with mothers with chronic conditions including multiple sclerosis and is an associate professor of occupational therapy at Temple University, said mothers want help that "still allows them to operate in the role of mother. Mothers don't want to be marginalized."

Dr. Jeffrey H. Boyd, a psychiatrist at the Yale-affiliated Waterbury Hospital and author of "Being Sick Well" (Baker Books, $14.99), said that when his late wife, Pat, was sick for many years - she suffered from diabetes, heart attacks, strokes, eventually went blind and her legs were amputated - the couple experienced some of this priority-setting.

"My wife would often be upset because the house was chaotic, the vacuuming wasn't done as much as it should have been," said Boyd. But she came to realize that caring for their daughter, Felicity, who was in college when her mother died, was more important.

"To her, Felicity coming out OK was more important than what happened with her illness," said Boyd. "For many mothers, how their kids turn out is more important than whether they have to suffer illness themselves."

Boyd said he has known of many mothers who "by sheer force of will, keep themselves alive until a child graduates from high school or college and shortly thereafter die. The illness is for many mothers less important to their sense of morale, than the question of whether they get to be good mothers."

Running a House from Bed

For Mary Smith, the hospital bed on the main floor of her ranch house operates as a kind of command central with phone, laptop, television, wheelchair and baskets full of files, all within easy reach. Over the years, she's found ways to do most anything from bed - whether it's folding laundry, mixing up cookie batter or wrapping Christmas presents.

Most important, it's where she holds court with neighbors, visitors, her husband, Jeff, and her sons, Shane, 14, and Jamie, 18, and their friends.

"I'm always telling my kids there are two things that are not broken in this body right now: My ears, because I'm always listening. I'll turn the TV off and I'll listen and I pick up on what's going on in the other rooms. I try to listen - not to be nosy, but to find out who's had the bad day, who needs attention.

"And my heart, knock on wood. I always say to my kids, everything may be broken, but I can always listen to you and I can always love you."

Seven years ago, Smith collapsed in her son Shane's second-grade classroom, where she was volunteering. She thought it might be a stroke, but eventually learned it was multiple sclerosis - a disease that attacks the central nervous system, resulting in symptoms that can be as mild as numbness or as severe as paralysis.

For a while after her diagnosis, Smith kept up her supermom schedule that included volunteering in her kids' classrooms, presiding over the PTO, acting as vice president of a junior women's club, and running her own business painting terra cotta pots.

But her symptoms worsened and for the past five years she has lived life mainly in a wheelchair or in bed and she has had to scale back her activities. For someone who was constantly out and about, leading community efforts and volunteering, the change in life has been difficult.

Sometimes she feels as if her children have had to grow up too quickly. Both have had to learn how to give her injections, to cook and do laundry, and vacuum.

"I have people say: `You are making great husbands,'" said Smith, `but it's too fast."

Smith, meanwhile, has learned how to run a household from bed. She keeps track of the kids' activities by cellphone and makes sure they have rides whenever they need them. "They have never had to drop out of an activity," she said, "and they are never left waiting. I've made sure of this."

She has a loyal network of friends and neighbors who frequently stop by to help. By her phone, she keeps a list of items she needs, so that if a friend calls to say she's going to Target or Shaw's, she knows what she needs there. This helps her relieve the burden on her husband, Jeff, who otherwise has an endless stream of errands and other household chores to do.

She also makes sure that somehow she gets to her kids' key activities - like the recent parents' weekend at Merrimack College where Jamie is now a freshman. The pain is ever-present lately and she worries about how she'll cope. Sometimes she gets to thinking, "This is such a waste. I could be doing so much more in the world. This is such a waste - just lying here."

But then she thinks about what she can do and one of those things is to be there for her kids.

"My kids tell me I'm a much better mother since I got sick," she said. "Because I'm here all the time. I'm not out running PTO meetings."

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