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A crash course in being a mom ... with MS.

When my husband Dave and I decided to have children, we had been married three years. We were both involved with our careers, he as an attorney, I as a teacher of children with hearing impairments. We had just bought a house in a lovely neighborhood. Life was wonderful.

That was in 1973. When our daughter was born in April '74, we were thrilled. However, shortly after Jamie's birth the wrist on my right hand started bothering me. The doctor diagnosed it as "mother's wrist," a common ailment in mothers of infants that comes from lifting and carrying your baby. When I became pregnant in 1975 with our second child, I experienced some eye problems which were diagnosed as optic neuritis, an inflammation of the optic nerve. My eye problems cleared up a few months before our son, Andy, was born.

Over the next few years, I had a number of other minor ailments that would come and go. It wasn't until our children were five and three that I decided I had to find a reason for all my minor, but ever present, complaints. After much testing, the diagnosis was "highly probable MS." As frightening as the diagnosis was, I was relieved. I wasn't a hypochondriac! But at the same time, a sense of panic overwhelmed me. Would I be capable of raising my two children? Would they suffer because their mother had a chronic illness? And -- this was the immediately pressing question -- should we tell the children? They were so young. Did they really need to know?

The Early Years (3-7)

We realized we had to tell them something. They could see, hear and feel that something "bad" had happened; Mom cried a lot and Dad, Grandma and Grandpa talked in hushed tones.

Jamie's (five years old) behavior began to change. She didn't want to leave the house to play with her friends. We had to leave her bedroom door open at night because she was afraid we'd leave the house without her. She'd often wander into our room in the middle of the night and climb in bed between us.

At three, Andy seemed less upset. However, he began carrying his special blanket around the house...something he had stopped doing.

We came to a decision one evening. We sat down with the kids and explained to them that Mom had an illness that the doctors didn't know much about. There was no medicine to make Mom better. Jamie wanted to know if I was going to die. After reassuring her that I wouldn't die from MS, we explained we would have to make some changes in our house. The children would have to help me more and come when I called them. They needed to be patient because it would take me longer to comb their hair, button their clothes and make their lunches. There was no immediate reaction. In truth, Jamie's fears took months and months to begin to resolve themselves. I think they are there, somewhere in a corner, to this day.

As the reality of living with a chronic, unpredictable illness began to sink in, I had to face the fact that if I wanted to remain an integral part of the family, I had to change the way I was using my time and energy. I didn't want to relinquish my role as mother and I certainly didn't want David to face the challenge of raising the children alone.

I cut down on the number of things I planned to do each day. I rested when the kids rested, so that I wouldn't be irritable and impatient.

To avoid testing their patience (and mine) I bought clothing that they could easily put on and take off by themselves. Even a three-year-old can dress with a minimal amount of help if you choose clothing properly. When possible, I bought shoes that had Velcro closures; I bought sweatpants instead of jeans, T-shirts instead of blouses.

I invented some games with Andy which involved his bringing me a clean diaper when he needed to be changed. Then he'd lie down on the floor or climb up on the bed so I wouldn't have to lift him up to his changing table.

Days were filled with the usual activities: school, play groups, lessons, visits to the park. I was still able to drive, but walking was getting more difficult with each passing month. I also began having trouble carrying things when I walked. So when Andy wanted to take cars and trucks to nursery school for "show and tell," I bought him a backpack that he loved. I began carefully to think out trips to parks, swimming pools, libraries. I obtained a handicapped parking permit from the Department of Motor Vehicles and looked for places with easy access. I took a stroller wherever we went because it gave me something to hang onto. I used the handlebars for my purse and other belongings and there was always a place for a tired child to sit. So far, the children's lives didn't seem to be that much different from other children's.

At home, to make life less stressful, we ate meals on a regular schedule. I simply couldn't be a short order cook, making special foods for a stubborn child, so, as young as they were, I began to ask for their input when I planned meals.

It may sound as if mealtimes were idyllic. Hardly! There were times when the kitchen table was a battlefield. I wanted the kids to eat a variety of foods, they wanted the same thing (like peanut butter sandwiches) meal after meal, day after day. I wanted them to try new foods, they wouldn't touch that "orange stuff." They were even picky about the way I cut their sandwiches.

One day out of frustration, I gave them choices. Without realizing it, I had stumbled onto a powerful parenting them the power of choice. They felt they were getting more power, but actually what I was doing was controlling the choices. Did they want a tuna sandwich or grilled cheese? Did they want their sandwich cut in half or in fourths? I even thought of a way to get them to try new foods. Did they want to try a spoonful of "the new stuff" now or before their bedtime treat? It started out as a game, but became an important technique for me that carried over into the larger game of living with MS.

Yet in some situations, giving the kids choices wasn't appropriate (like when they fought with each other, tested the limits, or had temper tantrums). It was frustrating and I often felt as though MS was turning me into an inadequate parent because I couldn't control them. Why couldn't we just get along? I finally realized that conflict in the family would never disappear and that it was indeed a necessary part of growing up, and that it had little to do with my MS. Still because of my MS, it was vital for me to find ways to protect myself from the stress.

I thought back to my teaching days and the techniques I used to keep order in the classroom. I searched the library for books about how to be a better parent and talked with parents (who didn't have MS) who were going through the same things I was.

I began to understand that getting the kids involved in finding a solution to their problem was the only answer. Whether it was bickering over who had possession of a toy, or whose turn it was, or who hit who first, the magic words became, "Hold it, guys! Let's see if we can work this out together." Then we'd brainstorm and come up with lots of ideas, some silly, some serious. Believe it or not 9 times out of 10 we'd arrive at a solution that recognized all of our ideas.

The Middle Years (7-12)

By the time the kids were seven and nine, I could only walk short distances and I seemed to be getting worse at a more rapid rate. I was very upset. I didn't know how I was going to manage. I didn't have the energy and patience other moms did. I worried that Jamie and Andy would have memories of a mom who was always in bed, always sick.

I had cut back on all but essential activities, like getting dressed, planning meals, and arranging schedules. Questions still remained: Who was going to make meals? laundry?...take the kids where they needed to go? Would I ever feel good again?

I learned to adapt, to think creatively. When the kids needed clothes, we went to a store that specialized in children's clothing, so that I could sit in a chair while the kids shopped with a salesperson. When Jamie was 10 or 11, she began shopping for her own clothes. She and her girlfriends would spend hours at the mall -- this seemed to be heaven to them -- then she'd put the items on hold until I could get to the store to see them.

I did, at this stage, have to turn the responsibility of preparing most of the meals over to Dave and the kids. At first it was fun for Jamie and Andy because we taught them how to use sharp knives, the can opener, the blender, the stove, the microwave and the toaster oven. It took patience (one thing everyone in a family with MS has to do is learn patience!) because I couldn't demonstrate what needed to be done. I had to "talk them through" each lesson.

The "fun" of helping in the kitchen wore off after a few months and it became a chore. We talked a lot about their feelings but finally ended up explaining that it was just "something that needed to be done, that families need to pull together and help each other get a job done." The one saving grace was that Jamie and Andy enjoyed having friends over so they could show off their new skills. My ability to walk in the house, where I could hang onto strategically placed furniture, was getting more limited and my upper body strength was now being affected. It was painful to face the fact that I couldn't "run" to the children when they were hurt, that I couldn't take them a glass of juice when they were sick in bed. I couldn't even take a frightened child into my arms to hold him or her because my arms were too weak. If the kids wanted or needed something, they had to come to me; I couldn't go to them. Nothing has ever been able to ease the sorrow I felt when I couldn't kiss a child good night in bed because I couldn't get the scooter close enough. These were facts of life, however, that we just had to face and learn to live with.

I continued to take advantage of parenting classes and workshops the school offered and asked school professionals for books that would give me new ways to handle age-old parenting problems. My aim was to anticipate and avoid problems -- a little different perhaps from the average mother who takes a more day-to-day attitude.

The Teenage Years (13-17)

To a parent of teenagers, and believe me, this has nothing to do with MS -- I have one statement: Pick your battles carefully! Teenagers desparately want more control of their lives and one way or another, they'll get it. I learned that it was important for them to make their own decisions regarding their clothes, music, hairstyles and friends. I didn't always like the choices they made, but I respected their need for independence. I often had to hold my tongue. Whe Jamie recently wore blue thermal underwear leggings, men's boxer shorts and inside-out sweatshirt to high school, I took a picture. I figure some day we'd both have a good laugh.

Now that Jamie and Andy are in high school, they are very busy with school work and outside activities. They want (and need) less of my time and attention. I'm no longer needed in the same ways I was needed when they were younger.

Yet, as their independence increases, my independence decreases. I need more help from them than ever before. I can't transfer from the scooter to the bed without their help. And I am no longer able to use the bathroom without assistance. I try hard not to take advantage of the kids or infringe on what I hope is their normal childhood. I try to respect their "turf." For instance, I'll try to wait for a commercial if I need help, or say, "In five minutes, can you..." Yet they understand that when I do call for help, they have to come. Even when they are furious with me for some reason, they somehow know that they have to separate that anger and help me. Maybe it's because it was ingrained in them so early. If I'd developed MS when they were teenagers, it might have been a whole other story.

Meal preparation is still a family affair. Anyone who is invited to eat at our house (my friends included) knows that he or she is expected to help prepare, serve and clean up the meal. At first Jamie and Andy were embarrassed by this. They thought their friends would be angry. Instead, their friends enjoyed the new experience and welcomed being part of the "hubbub" in the kitchen.

Are there still frustrations? You bet. Attending school functions, teacher's conferences and athletic events often presents problems because the facilities aren't always easily wheelchair accecsible. I feel guilty if I don't at least "try" to attend. I don't want the kids to think I don't care enough to try. I'd love to drive the kids and their friends to activities and listen while they talk. My friends tell me it's very interesting. My friends also tell me that teaching your child to drive can be a very special experience. Not only are the kids cooperative and helpful because they want you to take them driving, but you have them all alone, no interruptions or distractions...a rare opportunity at this age and one I'll miss.

Now that Jamie is 17 and Andy is 15, I've started to relax a little. I can see how capable and independent they've become. My having a disability hasn't ruined their lives. In fact, in some ways, they are better off because of it. They've learned to trust themselves and to face personal challenges head on. When the time comes for them to leave the nest, I know they'll be ready.

As for me, I now understand that having a disability isn't the worst thing in the world 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 open house. It's loving, caring, listening, guiding and supporting your child. It's consoling a child crying because her friends thought her haircut was ugly. It's counseling a child worried because his 12-year-old friend is drinking.

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. MS gave an opportunity for personal growth, a chance to see more clearly the important role I play in the lives of my children. This disease, which has taken so much from me, has also given me something in return.
COPYRIGHT 1991 National Multiple Sclerosis Society
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1991, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

Article Details
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Title Annotation:multiple sclerosis; includes related article on survival tips for parents
Author:Peterman-Schwarz, Shelley
Publication:Inside MS
Date:Mar 22, 1991
Previous Article:Excerpts from the 1990 annual report.
Next Article:You deserve freedom of speech!

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