Single mothers face the challenges of DMD with love, commitment and a little help from their friends
When a couple has a child with a neuromuscular disease, the condition has a profound impact has on the entire family — the parents' relationship with the children and with each other; the family's activities, finances and priorities; and everything else.
A husband and wife can take turns being available to their children, can earn two incomes or have a full-time earner and a full-time parent, can give each other emotional support, and in many other ways can divide the parenting and caregiving responsibilities. Occasionally they may stop to wonder how they'd do it without each other to count on.
There are many parents out there who know exactly how it's done when there's only one of them. Meet three moms, each with a son who has Duchenne muscular dystrophy, and all of whom have been going it alone for most of their sons' lives.
After more than 10 years of marriage, Linda McDonough and her husband adopted a baby, who appeared to be strong and healthy. At 2 years old, the boy, Timothy, was found to have DMD.
|When you feel overwhelmed, she suggested, "Sit down and have a good old boo-hoo. Get it all out. Wash out your eyes. Then you pick yourself up and then you go again."|
"It was very difficult for my ex-husband," McDonough recalled. He left, paid child support for a year, then dropped out of sight.
"It's his loss because Timothy's a sweet kid," said McDonough, who's raised her son alone for most of his 18 years. She's faced the challenges of motherhood with energy and a very positive attitude.
The biggest challenge in being a single mom to a boy with DMD is time management, said McDonough, who lives in Phoenix.
"You want to live a balanced life, you want to have a home life, your work life, your spiritual life. If I'm not at work, I'm at home taking care of Tim. It's very hard. If you do go out, you feel, oh gosh, I could be doing this or that with Tim."
In earlier years, Timothy went through phases of saying he wanted a dad or a younger sibling, and his mom thinks he missed being part of a larger family.
"It's always been just Tim and I," she said. "And now, quite frankly, he only trusts me. He's getting to the age where he's modest. 'Only my mom can do it.' It's really becoming more difficult trying to get him to trust other people."
McDonough works from noon to 8 p.m. as a staff manager with AT&T. "I'm fine in the morning. I get up, I get him dressed, I take him to school. But I need somebody there to get him off the bus and stay with him till I get home."
She has caregivers provided by a state program who stay with Tim after school until she gets home from her day's work. Then it's the two of them on their own.
"Four to six times a night, I have to go in there and roll him over. So I haven't had a full night's sleep in many many years."
She's particular about who takes care of Tim.
"You've got to know who is around your child all the time, what are they saying to your child," she pointed out. "Is that the kind of influence you want him to have? I like to keep things light, keep things positive, because he's a little worrywart. I've had some bad experiences. I've had to dismiss people, to say, 'You're not helping my son, you're making it worse.'"
McDonough feels fortunate that her job allows some flexibility for Tim's needs, such as when she had to stay home with him for several weeks after he had spinal surgery.
Now that Tim is grown, the caregiving is more demanding, McDonough acknowledged. "I'm going to the gym to build myself up because it is getting harder now, even just rolling him. You think about, OK, I've got to keep in shape because I've got to keep doing this."
When his power wheelchair breaks down, she's unable to push it in manual mode. But with her upbeat attitude, McDonough carries on.
After her divorce, she and Tim lived in Kansas, near her parents and brothers. Five years ago, the Kansas weather gave Tim bronchitis and other respiratory problems. McDonough arranged for a job transfer to Arizona, though she didn't know anyone in the state.
Her parents didn't understand why she would leave a location where she had family support. She told them it was "because you've got to do the best for your child. You've got to make choices, you got to make sacrifices. We're doing it."
Though she misses her family, she's made new friends through work, church and her neighborhood. And she set out to prove to Tim that life was full of adventure. "I'm showing him that, hey, we're in a wheelchair but we can do things. We've driven to Las Vegas, we've driven to California, we've driven to Kansas twice. Have van, will travel. We were very active before he got in a wheelchair. We do stuff now. We're still going to go places, do things. It's important that he realizes that."
As for relationships in her life, McDonough said, "I've dated off and on during the years. It's hard to explain [to a boyfriend], I've got to take him to the doctor today, go here, go there.
"It takes a lot to keep going with Tim. And how much do I have left over to dedicate to another person? I'm pretty exhausted."
She has a particular peeve about people who try to fix her up with men who have disabled children, as if that factor would make them compatible. At the moment, McDonough's accepted that, "Now is not the time for me to be doing the dating thing."
An important emphasis in the McDonoughs' life is self-advocacy. Linda's teaching her son that it's important to speak up for his rights. By writing letters and making calls, they've helped to make restaurants, a school sidewalk and other facilities accessible. She also started a crime watch program in her neighborhood.
She tells Tim, "You know what, one person can make a difference. I feel maybe that's part of my purpose here, not just for you to enjoy the bathroom but for everybody in a wheelchair." McDonough believes that emphasizing ways to do things, rather than dwelling on losses, helps Tim to feel "more empowered" as his disability progresses.
McDonough credits her church and her faith with sustaining her.
"A lot of people ask me, how do you do it? I look up at the sky and say, I pray every day, just let me get through this day. There's no magic pill. I just get through the day."
McDonough sees Tim as the source of much that's good in her life. "My life is totally different than the way I thought it was going to be. But I've enjoyed him so much and try to do the best I can.
"I've matured. I think I've got very good self-esteem, I've got a can-do kind of attitude. I don't think I might have been that way before. I'm a lot more assertive."
She advises other single parents not to hesitate to ask for help, whether it's calling on government agencies, friends or professional help for the emotional stresses.
"Share your fears and frustrations," she advised. "You're so used to doing it on your own all the time, you forget you can pick up the phone and ask somebody, 'Hey, I need somebody to come over today.'"
Despite her optimism, McDonough is no stranger to loneliness or times of discouragement. "I'm lonely. I really am. Sometimes I think, boy, it would be nice to have somebody else to talk to and to go through the things. So you pick up the phone and you call your family or your girlfriend or something like that."
When you feel overwhelmed, she suggested, "Sit down and have a good old boo-hoo. Get it all out. Wash out your eyes. Then you pick yourself up and then you go again."
Veronica Rooney of Laurel, Md., lost a brother, Bill Kohnken, to DMD in 1987. She was then 17, and she entered "a rather unpleasant period" involving drinking and drugs. She dropped out of college, married at 19 and had a baby just after she turned 20.
|"I decided I'm just going to make his life as good as I can for as long as I can."|
The marriage soon "died a natural death," and Rooney and her son moved in with her parents. Over the next few years, she got her life together.
When her son, Vincent, was 5, she was able to move out on her own. About that time she noticed physical mannerisms in Vince that reminded her of her late brother. At 6, Vince was given a diagnosis of Duchenne MD.
"I was afraid I was going to backslide," Rooney said of the diagnosis. Instead, she poured her energy into fighting the disease. "I think I was going on an adrenaline rush. We were going to raise money and single handedly do everything but cure the disease. And about eight months into it I crashed."
After that first spurt of energy, the impact of her son's diagnosis hit her hard and she underwent a period of depression. "It's like you're all alone in the world. You're dealing with something that can't possibly be handled. No matter which way you turn, it's gonna suck.
"What I finally did was to say, 'I'm just going to make his life as good as I can for as long as I can.'"
Rooney has proceeded to do that, with help from her family and friends, and the knowledge of what DMD means.
Her ex-husband sees Vince a few times a year, but doesn't pay child support. Rooney has built a career in telecommunications with an Internet company and supports her son, keeping a close eye on her health insurance benefits and their implication for the future.
Having been through DMD with her brother, an uncle and other relatives for five generations, her family is aware of what kind of help Vince needs and will need. "They've been terrific," Rooney said. "We've all been through this. We all pitched in where my brother was concerned. So they've all been right there beside me during this whole thing."
|Telling a man that her child's needs come first "helps to weed out the jerks."|
Friends help too. "I've been very lucky in my friends because they've all pitched in wherever they can, whenever I need a break, or just little things they've done for me. Like putting in a ramp, one of my friends took care of that. I've been very fortunate that my friends have done that and they've become really wonderful role models for him."
While some single women who have children with disabilities find it difficult to date, Rooney doesn't dwell on that as an obstacle. Telling a man that her child's needs come first "helps to weed out the jerks. You can figure it out pretty quick. I got to the point where I was very open about it. It's kind of a second-date issue."
More difficult for her was a "guilt factor" in asking a man to be involved with a child with a progressive disease. She worried, "How can I do that to somebody else? How can I put that person in a position that I know I'm going to be in? And getting over that actually was a real hurdle for me."
Rooney's now involved with "a wonderful man" who seems to fit in fine with the family. Given her familiarity with DMD, Rooney's concerned about her ability to provide the physical care Vince will need as he grows larger and becomes more disabled.
"I know the future. I know what's coming, I've seen that," she said. "One of the things I'm working on right now is trying to save enough money to be able to hire help when the time does come that I need it, because I know I can't do it myself.
"I'm not in good physical shape. It preys on your mind. When is the time going to come when I can't handle it?"
Rooney copes with her fears for Vince's future with a sense of humor and a drive to remain as informed as possible about DMD treatment and research. She also focuses on her son's enjoyment of his life today, driving him to see friends and even letting him skip a couple of days of school to visit his grandparents.
Acknowledging that Vince's diagnosis helped her to "grow up," she appreciates the joys he's brought to her life, and the wisdom.
"It gave me some kind of a focus because I do have a goal where he's concerned," she said. Rooney has some advice for other parents who are raising their children with neuromuscular disease alone:
"First thing I'd say is: Do not go into a shell.
"The second thing I would say is: Get to know everybody at your kid's school. It's good to know that everybody's aware of your child, everybody is in support of your kid.
"And don't be afraid to ask for help. I hate asking for help. But sometimes you have to."
Rae Butler of Hesperia, Calif., in the high desert north of the San Bernardino National Forest, has been single parent to her son, Philip, since he was 1½ years old. His parents divorced before he received a diagnosis of DMD.
|"It's nice having just the two of us. He can do what he wants when he wants."|
Now 23, Philip is "hanging in there. He's totally vent-dependent and is pretty much bedridden" with a weakened heart, his mother said. "He probably gets up in his chair once or twice a week at the most for two or three hours."
With no financial or other support from his father, Philip has depended on his mother for everything. "Financial has been the worst" of the stresses of single parenthood, she said.
They now live on Philip's Social Security benefits and payment Butler receives from the county to be his caregiver.
For several years after Philip turned 16, nurses provided some of his care in the home. "But then the nursing company decided they couldn't handle it. And I haven't in over a year been able to find another nursing company that works in our area," Butler said.
She had worked outside the home for a few years, but now cares for Philip as a full-time occupation. Her son's bed is in the living room and Butler sleeps on a hide-a-bed in the same room. "I have to sleep right next to him so I can roll him in the middle of the night or suction him if he needs suctioned or whatever he needs."
There are pros and cons to the arrangement, Butler said. Though having someone to help would allow both Rae and Philip more independence, "On the other hand, it's nice just having just the two of us. He can do what he wants when he wants."
Butler's support system includes friends, family and Philip's girlfriend. Her parents, two sisters and their children live nearby.
"A year ago, I had surgery and couldn't do anything for five weeks and my mom came and stayed with us and did all the care," Butler said. Butler's mother helped with suctioning Philip, bathing him, turning him at night and cooking.
"She's always there for me. My whole family is."
Philip is also close to three male cousins around his age.
As for her life as a single woman, Butler acknowledges that Philip comes first. "I really don't have a life for myself. But he's my first priority and will be.
"Even when he had nursing, I worked 8 to 5 and I came home and worked 5 to midnight with him. So I really have not had a life for myself."
As for dating, "I haven't had the chance to even get involved and I haven't really thought about it. It's not time for me, and I realize that and the time will come."
Support for the family also comes from their church. "We don't attend because it's too hard for him to be up. They bring the sermons on tape to us and the pastor comes to our house all the time." Though MDA support groups meet too far away to be convenient for her to attend, Butler has found support through other families she's met through MDA activities.
"I've met several families up here and we stay in touch. Their kids are younger so they call and say, well, this is happening... I say, yeah, that's what's going to happen," she explained. "So we have that support. I try to stay on top of everything through the computer and through MDA."
During Philip's childhood, Butler learned to accept the effects of DMD as they occurred. "You can pretty much take it in stride because the kids will," she said. "You have to be patient with them because they're going through a lot of falling and a lot of crying, but they still take it in stride as children."
She found the hardest time for Philip was his teen years when his friends were becoming more independent. "And that makes it difficult, very difficult. But you just kind of help them through it. There really isn't much more to do. To be there for them."
As Philip's disease has advanced, his activities outside the home have diminished, and his physical demands have increased.
Butler and her son spend time on their computers, sometimes e-mailing each other. They rent and buy movies on tape and enjoy reading. An occasional family barbecue, a shopping trip or an outing to see one of his cousins perform karaoke round out the schedule.
What would this single mom say to those who don't understand how she can structure her life around her son's needs?
"I would say you have to do what you have to do. And if you are the only parent you don't really have a choice. Myself, I don't feel that I'm burdened with it. He's a blessing."
From her life with Philip, Butler has "really learned to be patient. He brings a lot of joy to my life."
|"You may not have father and mother and siblings, but you build a family through MDA and through the people that get attached."|
A few years ago, Butler even considered the possibility of adopting another child with DMD.
"They need the love and attention and if they're out there and have nobody, that's not fair to them. It's not their fault they have the disease," she said. "And I've been through it with my son so if I adopted one younger, I'd know what I'm going to go through and what they have to go through."
Her advice for other single mothers:
"Don't deal with the future. Deal with now. Take it one day at a time. If you have to, take it an hour at a time.
"When Philip was put on the ventilator at 16, they told me he wouldn't live through the summer, and almost wouldn't live hour to hour. We didn't know. Then I took it hour to hour, minute to minute if I had to."
Butler also offers to respond to any single mother who wants some support or just needs to talk. "I'm there. That's one thing I've always been really open about. It's nice to have somebody you can lean on."
She added, "You may not have father and mother and siblings, but you build a family through MDA and through the people that get attached. There are people out there."