A Mother's Story
by Shelley Peterman Schwarz
When my husband David and I decided to have children, we had been married four years. We were both involved with our careers, he as an attorney, I as a teacher of the hearing impaired. We had just bought a house in a lovely Madison neighborhood. Life was wonderful.
That was in 1973. However, shortly after our daughter, Jamie was born in 1974, the wrist on my right hand started bothering me. The doctor diagnosed it as "mother's wrist," a common ailment in mothers of infants. (It comes from lifting and carrying your baby.) When I became pregnant in 1975 with our second child, I experienced eye problems that 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 5 and 3 that I decided I had to find a reason for all my minor, but ever present, complaints. After much testing, and right before my 33rd birthday, the doctors gave me their diagnosis, "highly probable - MS". I knew they were right.
I remember vividly driving to David's office, closing the door and telling him what the doctor suspected. Neither of us knew what to say. We just held each other. We had read about multiple sclerosis in newspapers and magazines but neither of us knew anyone personally who had the disease.
Yet as frightening as the diagnosis was, I was relieved. There was a label for what was wrong with me. I wasn't a hypochondriac. (And it wasn't as bad as what I had imagined - a brain tumor.)
The Early Years: 3-7
The big question was what should we tell the children? They were so young. Did they really need to know? It wasn't long before we realized that 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 behavior began to change. My tiny, outgoing, little dynamo with Shirley Temple curls didn't want to leave the house to play with her friends. We had to leave her bedroom door open at night because she told us she was afraid we'd leave the house in the middle of the night without her. And there were many nights when she'd wander into our room and climb in bed between us.
At three, Andy was usually a happy-go-lucky child who loved to dress-up and pretend. Now he began sucking his thumb and carrying his special blanket around the house ... something he had stopped doing months before.
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 and there was no medicine to make Mom better. Jamie's first question to me was "Are you going to die?"
Serious, perceptive Jamie. I wasn't surprised at all by her question. I was angry because a 5 year-old shouldn't have to worry about such things. It was the first of many times that I would get angry because of my illness.
As we talked to the kids, we tried to tell them things in terms they could understand. It would mean that they would have to help me more and come when I called them. They would have 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. However, over the next few months as more questions surfaced we tried to reassure them by being open and honest.
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.
Two years after my diagnosis, I had to make the agonizing decision to quit my job. I couldn't keep up the pace and I was losing my ability to sign and fingerspell. At home, I began to rearrange my schedule, consolidating and eliminating chores. I cut down on the number of things I planned to do each day. With two normal active youngsters, I tried to save my energy for them. And I rested when the kids rested so I wouldn't be irritable and impatient.
Sometimes I misjudged my strength and energy, like the time I walked Jamie to kindergarten, a distance of about six blocks. I had to ask another mother, who had driven her kids to school, for a ride home. I didn't have the energy to walk back.
Getting the kids dressed was another problem. I bought clothing that they could put on and take off by themselves. Even a 3 year-old can dress with a minimal amount of help if you choose clothing properly. When Andy had his heart set on a pair of (tie) Sesame tennis shoes, I had the cobble adapt the shoes and make Velcro closures Andy could manage himself.
At times, I enlisted their help. At five, Andy was helping me collect and carry laundry to basement. Always creative, he used belts to fasten several filled baskets together to make a "train." Then he fastened a rope to the first basket and pulled the train of baskets to the top of the basement steps. However, the part he liked best was throwing the clothes down the stairs to me.
Our days were filled with the usual activities: nursery school, public school, playgroups, lessons, and visits to the park. I was still able to drive, but walking was getting more difficult with each passing month. The kids had to learn to watch for me whenever I came to pick them up because I didn't have the strength to get out of the car to get them. I remember sitting in the car watching them play in the little park by our house. A quick beep on the horn told them when it was time to go.
Mealtime was another challenge. One evening we sat down to eat and I served the kids a new dish, beef stroganoff and noodles. They wouldn't touch it. Out of frustration, I asked, "Do you want supper on your plate in one "mountain" or two?" Jamie chimed in "I want two mountains." It worked! I got them to try something new without a major confrontation.
Without realizing it, I had stumbled onto a powerful parenting tool... giving them the power of choice. 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 they had dessert? It started out as a game, but became an important technique for me that carried over into other parts of my parenting.
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 I wasn't a good 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. But I needed to find ways to protect myself from the stress that the conflict created. 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 problems 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, we'd brainstorm and come up with lots of ideas, some silly, some serious. The final solution recognized all of our ideas and was agreeable to everyone. The kids began to learn how to compromise and how to listen to each other.
One particular memory stands out. Jamie and Andy were fighting over the wooden building blocks and began throwing them at each other. As a mother, I felt like I should be able to control my children. But, the stress was quickly depleting my strength and ability to cope. David wouldn't be home for another 2 hours. I didn't know what to do so I sent them to their bedrooms while I took time to think.
Then a curious thing happened. While still in their rooms, the kids began talking to each other. Jamie thought of a way they could solve the problem. Andy vetoed it. They continued talking back and forth until a settlement was reached, all without my saying a word! Here was another powerful parenting tool! If left to themselves, my children could and would settle many of their arguments through negotiations. And, I could save energy!
The Middle Years: 7-12
Before my illness, my family thought of me as a competent, fiercely independent person. At 5' 1" and 99 pounds, I was quick and efficient. But, every single day my physical abilities deteriorated a little more and I was no longer the dynamo I once was. I cried; sometimes they were tears of sadness, sometimes they were full-blown temper tantrums. I was frustrated by my lack of control. I worried when and if the deterioration would stop. 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.
As the children started public school, I had to give them more independence in their lives. By the time the kids were 7 and 9, I could only walk short distances and I was getting worse at a more rapid rate. I cut back on all but essential activities, like getting dressed, planning meals, and arranging schedules. But, questions still remained. Who was going to make meals? ...Do laundry? ...Take the kids where they needed to go? Would I ever feel good again?
I used what energy I did have trying to adapt. When the kids needed clothes, we went to a store that specialized in children's clothing. I would sit in a chair while the kids shopped with a salesperson. When Jamie was ten or eleven, she loved going to the mall with her friends, so it was fun and easy for her to shop for her own clothes. I gave her the charge card so she could bring her selections home on approval.
David and the kids now had the responsibility of preparing the meals. At first it was fun for Jamie and Andy because we taught them how to use the can opener, the blender, the stove, the microwave, and toaster oven. It took 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 acknowledged the kids' feelings and expressed our own similar thoughts. But it was something that needed to be done and everyone had to help.
The kids learned that if they wanted my help with homework, it had to be early. David was also available to help them but his time was limited because he was doing my household jobs as well as his own.
One incident Jamie and I now laugh about happened when she was in fourth grade and got her first long-range assignment, (due in 6 weeks). Since she had never done one before. She didn't realize that she was supposed to work on the project little by little. The night before the assignment was due was a disaster. Jamie was in tears and so was I.
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. If the kids wanted or needed something, they had to come to me; I couldn't go to them.
I'll never forget the day that my limitations were painfully obvious. On his way home from school, Andy "wiped out" on his bike. It had rained heavily and there were wet leaves and dirt in the gutters. As he came around a corner, he lost control of his bike and landed in a heap in the street. Luckily, some high school boys were driving by and saw the accident. They stopped the car, picked Andy up and brought him home.
Thank goodness Jamie was home to help me! I was having a bad MS day. I was flat on my back in bed. At my request, Jamie helped Andy into our bed on David's side. Andy's knees were bruised badly. So Jamie, following my directions, cleaned up his wounds as I held his hand and tried to calm him down. After the crisis was over and the kids were in the den watching TV, I cried my eyes out. I was angry for the umpteenth time with my illness! I wanted to be the one to minister to my child's needs! I was angry that the responsibility of helping Andy landed on Jamie's 12 year-old shoulders!
After months of struggling to walk in the house, I finally had to relent and start using my scooter. Life improved greatly. I could get from place to place without exhausting myself and I could stay involved in household activities.
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. I even started a "Mothers-of-10-Year-Olds" support group.
During those middle years parenting wasn't as physically demanding as those early years. It was, however, more emotionally demanding. There were always decisions to be made and arguments to mediate. Why can't I get new roller skates? See "R" rated movies? Ride my bike downtown?
One day after handling several confrontations on various issues, I lost control. I screamed and yelled and told the kids that I couldn't take it anymore! Jamie, who often was the one pushing the limits, made an interesting observation. "Mom," my perceptive 11 year-old said, "You're not angry with us, you're angry at your MS. You're probably just tired. Once you've had a nap, things won't bother you as much." She was right.
The Teenage Years: 13-17
To a parent of teenagers, I have one statement: Pick your battles carefully! Teenagers desperately want more control in their lives and one way or another they'll get it. When Jamie wore ripped jeans and a faded sweatshirt to an awards ceremony, I kept my mouth shut. When Andy threatened to shave his head and pierce his ear, I bit my tongue. I didn't always like the choices they made, but I respected their need for independence and understood that they were searching for their own identities.
Once Jamie and Andy reached high school, they were very busy with schoolwork and outside activities. Jamie was as tall as I was and often wore her shoulder length Shirley Temple curls in a braid. Andy was almost 5' 7" and even though he ate like a horse, there wasn't an ounce of fat on him.
The kids wanted (and needed) less of my time and attention. Their friends were more important to them than their family. They spent hours alone in their rooms with the door shut...often on the phone.
As their independence was increasing, my independence was decreasing. I needed more help from them than ever before. I couldn't transfer from the scooter to the bed without help. I was no longer able to use the bathroom without assistance. I watched my weight carefully so that Jamie would be able to help me.
I tried hard not to take advantage of the kids or infringe on what I hoped was their normal childhood. Yet, they were able to understand at a very early age that when I called for help, they had to come. Even when they were furious with me for some reason, they somehow knew that they had to separate that anger and help me.
Meal preparation was still a family affair. Everyone who was invited to eat at our house, (my friends included), knew that they would be asked to help prepare, serve and clean up the meal. At first, this embarrassed Jamie and Andy. They thought their friends would be angry. Instead, their friends enjoyed the new experience and welcomed being part of the "hub bub" in the kitchen. After accepting a dinner invitation, one of Andy's friends asked, "What are we making for dinner tonight, Mrs. Schwarz?"
Were there other still frustrations? You bet! Attending school functions, teacher's conferences and athletic events often presented problems because the facilities weren't always easily 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.
I wished I had been able to drive the kids and their friends to activities and listen while they talked. My friends told me it was always very interesting. My friends also told me that teaching their children to drive was a very special experience. The kids were especially cooperative and helpful because they wanted to go out with you to practice their driving. However, the best part was that you had them all alone, no interruptions or distractions... a rare opportunity in those teenage years and one I missed.
When Jamie was 19 and Andy was 17, I've started to relax a little. I could see how capable and independent they were becoming. My having a disability hadn't ruined their lives. In fact, in some ways, they are better off because of it. They learned to trust themselves and to face personal challenges head on. When the time came for them to leave the nest and head off to college, I knew they were ready.
As for me, I now understand that having a disability wasn't the worst thing in the world that could happen to a parent. What would be 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 her friends thought her haircut was ugly. It's counseling a child worried because his 12 year-old friend is drinking. It's helping a child understand relationships and what it's like to "be in love".
As difficult as it may have been for me while the kids were growing up and going through those "normal" stages, I realize now how important those stages were to their development. It meant they weren't "skipping" any stages and "growing up too fast." And after my professional training as a teacher and my personal experience as a parent, there's one thing I believe. If kids don't test the limits, challenge authority, stretch the truth, have tantrums, behave selfishly, and make some "bad" decisions when they're young, they will do it when they're older ... and then the stakes are much higher.
Before I had MS, my life moved at a frantic pace. I often over-extended myself, short changing my family along the way. The illness forced me to make choices about where I was putting my time and energy. MS gave me 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.