Living withmultiple sclerosis (MS)means you can’t predict how you will feel from day to day. And that can be particularly tough when you’re a single parent like Verena Frydberg.
Because of the unpredictability of her disease, the 36-year-old mother of two from Rockland County, New York, does her best to plan ahead. Frydberg lays out her children’s clothing the night before. She buys extra items when she shops so she won’t run out of milk unexpectedly. She even stocks up on greeting cards and children’s gifts so her kids, a 7-year-old girl and a 6-year-old boy, always have something to take to birthday parties.
“The days of flying by the seat of my pants are gone,” says Frydberg, who started having symptoms when she was 16 but wasn’t diagnosed with MS until she was 21.
Recently divorced, Frydberg’s parenting strategy also includes making sure her children are as self-sufficient as possible. For example, she has the kitchen organized with bowls, cereal, and milk within their reach so they can make breakfast for themselves.
Before they couldn’t tie their shoes by themselves, she bought only the type that closed with Velcro. “There’s a lot I can’t do for them, physically,” she says. She also has a live-in au pair to do some of the parenting chores that Frydberg simply can’t. “She helps me a lot because the fatigue can be overwhelming,” Frydberg says.
Frydberg gets up every morning an hour before her children. She says she needs the time to take her medications andwarm up her musclesbefore she can get moving. She tries to stay ahead of her condition and its symptoms as much as possible so that she can be there for her son and daughter.
Happy to Be a Mom
Frydberg says she never hesitated to have children. “I was advised it was safe to become pregnant,” she says.
According to the NationalMS Society,pregnancy甚至可能暂时降低症状在许多女人, especially during their second and third trimesters. But that wasn’t the case for Frydberg. While pregnant with her daughter in 2007, she felt pins and needles in the soles of her feet and lost feeling in her right leg. The feeling eventually did return. However, while giving birth to her son in 2009, she had an epidural, and it left her without any feeling in her right leg again. Since that day, it has never returned.
Her MS Helps Her Teach Tolerance
Frydberg says her children are still too young to understand that their mom’s MS and what having a disease of the central nervous system means.
“They know that Mommy moves slow and that she does things a little differently than their friends’ moms,” Frydberg says. It’s also important to Frydberg to teach her children that they should keep an open mind and be sympathetic to others who are different.
Frydberg remembers when her children were once playing with some other kids, and one of the kids began playing with Frydberg’s cane. Her daughter, who was about 4 at the time, snapped: “That’s not a toy. Mommy needs that to help her.” It brought tears to Frydberg’s eyes. “Things like that are very sweet,” she says. “You see that your children understand that you use those tools to help you.”
Children learn how to handle and react to different situations by watching their parents, Frydberg says, so she’s careful to stay as upbeat as she can and would advise other parents living with MS to do the same. “If you have a positive attitude towards things, that’s how they’re going to learn to deal with things, too,” she says.
Parenting With MS
Psychologist Rosalind Kalb, PhD, vice president of clinical care for the National MS Society, offers these tips for parenting with MS:
Simplify.It’s important to simplify everyday activities and do them in an organized fashion. “If you do things in such a complicated way that the preparation takes all your energy, you can’t enjoy what you’re doing,” she says.
Set priorities.Fatigue is a commonsymptom of MS. Save your energy for the things that matter most to you. You may have to compromise on some activities, like cleaning or other housework, so you have the energy to be with your kids.
Call in backup.MS often can get in the way of the best-laid plans, Kalb says, "so you want to have alternatives.” Having some backup prevents your kids from being disappointed when you can’t do as promised.
Be organized.Manypeople with MShave cognitive issues, includingdifficulty remembering. If this is the case for you, use a family calendar to keep track of appointments and play dates. “That way you don’t have to struggle to remember who has to be where, when,” Kalb says.
