When Mom has multiple schlerosis, part 3

Real Living with Multiple Sclerosis, Aug 2000 by Schwarz, Shelley Peterman

Raising kids while coping with MS

In Part 3 of this three-part series, Shelley Peterman Schwarz focuses on raising her children during the high-school years. What's the definition of "teenager"? A 2year-old with hormones and "wheels."

I have one thing to say to parents of teenagers: Choose your battles carefully! Teenagers desperately want more control in their lives and, one way or another, they'll get it. I learned that it was important for my daughter, Jamie, and my son, Andy, to make their own decisions regarding their clothes, music, hairstyles, and friends. I didn't always like their choices but I respected their need for independence.

I often had to hold my tongue. When Jamie wore men's boxer shorts over blue thermal underwear leggings and an inside-out sweatshirt to high school, I took a picture. When Andy, wore ratty old sandals with his tuxedo to the prom, I took a picture. I figured someday we'd have a good laugh, especially when they had children of their own.

When Jamie and Andy were in high school, they were busy with schoolwork and outside activities. They wanted (and needed) less of my time and attention. Being with their friends was infinitely more important for them than being with the family.

Jamie spent hours alone in her room with the door shut talking on the phone. She desperately wanted us to put in a second line just for her. When we told her what it would cost and that she would be expected to pay for it, she thought we were being unreasonable. It was an argument that lasted for years. We finally compromised on getting "call waiting," mainly so my husband and I could receive calls. Everyone pitches in

As the kids' independence increased, my independence decreased. I needed more help from them than ever before. I couldn't transfer from the electric cart to the bed without their help. And I was no longer able to use the bathroom without assistance. It would have been unfair to always expect Jamie to be the one to help me in the bathroom simply because she was female. So I acknowledged both Andy's embarrassment and mine, and explained that I'd need his help. After he helped me the first few times, it was no big deal for either of us.

I tried hard not to take advantage of the kids or infringe on what I hoped was their (somewhat) normal childhood. Somehow, the kids understood that when I called for help, they had to come. Even when they were furious with me for some reason, they knew that they had to separate that anger and help me.

Meal preparation was a family affair. Anyone who came to our house for a meal (my friends included) helped prepare, serve, and clean up. At first Jamie and Andy thought their friends would be angry. Instead, their friends enjoyed the new experience and welcomed being part of the "hubbub" in the kitchen. After accepting a dinner invitation one night, Andy's friend asked me, "What are we making for dinner tonight, Mrs. Schwarz?"

Were there other frustrations? You bet. Attending school functions, teacher's conferences, and athletic events often presented problems because the facilities weren't always wheelchair accessible. I felt guilty if I didn't at least "try" to attend. I didn't want the kids to think I didn't care enough to try.

By the time the kids were ready to learn to drive, I had relinquished my driver's license, so I wasn't legally qualified to teach them. My friends told me that teaching a child to drive could be a very special experience. Not only are the kids cooperative and helpful because they want you to take them driving, but you also have them all alone, with no interruptions or distractions-a rare opportunity for parents of teens. I was sad I had to miss it.

My disability hasn't ruined their lives Now that Jamie is 26 and Andy is 24, I can see how capable and independent they've become. My disability hasn't ruined their lives. In fact, in some ways, they're better off. They've learned to trust themselves and to face personal challenges head on. They are wonderful, capable, and caring adults.

I realize that having a disability isn't the worst thing that can happen to a parent. What is a tragedy is letting your disability cripple your ability to stay involved in your children's lives. Parenting is so much more than driving carpools, attending gymnastics meets, or baking cookies for an open house. It's loving, caring, listening, guiding, and supporting your child. It's consoling a child crying because she blew a big test. It's counseling a child worried because his 14year-old friend is drinking. It's helping a child understand relationships and what it's like to be in love.

Before I had MS, my life moved at a frantic pace. I often overextended myself, shortchanging my family along the way. The illness forced me to make choices about where I was putting my time and energy. This-disease, which has taken so much from me, has given me an opportunity for personal growth and a chance to see more clearly the important role I play in the lives of my children.