Life with MS

I was so naive and unprepared when I became a parent. I was completely overwhelmed by the 24/7 responsibility. And I certainly didn’t expect to be diagnosed with multiple sclerosis! Every day, it seemed I lost physical abilities, and I didn’t have the energy or stamina of a normal 32-year-old mother. It was difficult and depressing for me, especially when I saw what other mothers were doing.

Our first hurdle was, “what do we tell the children?” Even though they were so young, they knew that something bad had happened. Mom cried a lot; Dad, Grandma, and Grandpa talked in hushed tones. Outgoing little Jamie didn’t want me to leave her sight. Happy-go-lucky Andrew began sucking his thumb – something he had stopped doing months before.

One night, my husband, Dave, and I gathered our courage and told the kids that Mommy had an illness the doctors didn’t know much about and there was no medicine to make Mommy better.

Jamie’s first question was, “Mommy, are you going to die?”

At just five, she could ask piercing, perceptive questions. That night I cried myself to sleep. My MS had robbed my children of the carefree childhood they deserved. I vowed to try to keep our world as normal as possible.

As my disability increased, we tried to explain things in terms they could understand. Mommy’s hands were weak and they would have to be patient because it would take me longer to comb their hair, button their clothes and make their lunches.

Since helping the children get dressed was stressful for me, Jamie and Andrew helped select the clothing we purchased. It had to be easy for them to put on and take off. (Even 18-month-olds have strong opinions about what they like to wear.) I learned not to fight them or impose my taste on them. In the process, the kids learned to dress themselves independently at an early age. To avoid morning hassles and decision making, clothing was chosen the night before and set out for the next day.

As the years passed, however, the overwhelming fatigue and increasing disability meant that I needed more and more help. We constantly made changes that made life easier. As an example: Dave and I rearranged where we kept the toys and games to give the kids more independence. Boxes, shelves, and containers were within easy reach. No climbing necessary. The added benefit to having a place for everything was that when they were done playing, they could put their toys away. Yes, Jamie and Andrew were often slow or reluctant to clean up, but, there was no TV, (or bedtime story, or snack) until things were put away.

One day, I realized that the way I asked the children for help was part of the problem. Yes, I was saying my ‘please and thank yous’, but there was something else. Apparently, requests such as, “Come and help me start dinner,” (or fold the laundry, straighten up the family room, etc.,) seemed to be sending the wrong message. The words “help me” made it sound like these were my jobs. The kids had inadvertently gotten the impression that these activities were Mom’s and Dad’s responsibility. In reality, everyone’s help is needed to make a house a home. Making this discovery was life changing for our family!

Because the heartbeat of the house is the kitchen, it provided a fertile ground for us to begin our “House Rules” campaign. The first rule: “At mealtime, nobody leaves the kitchen until everybody leaves.” It was amazing how helpful and efficient even young children can be.

As the children’s confidence grew and they matured, their kitchen tasks became more involved. From carrying dishes and cups to the sink, to sweeping the floor, wiping off the stove and countertops, and scrubbing crusted baking dishes, they knew how to clean up a kitchen.

When Jamie and Andrew were nine and seven, I was physically unable to help with meal preparation or clean up. So the first rule was amended to include: “Everyone eats meals, so everyone is involved with meal planning and preparation.” When their friends joined us for meals, they were expected to pitch-in as well. Our kids had a sense of pride when their friends saw Jamie cutting vegetables with a sharp knife or Andrew using the stove to make grilled cheese sandwiches.
 
Time brings changes
 
As time went on, there was less and less I could do in the kitchen, so we were always looking for new ways of accommodating my disabilities. After a while I began to see my limitations as a blessing. Because I couldn’t physically coordinate my hands to crack an egg, didn’t have the strength to return the blender the top shelf of the cabinet, nor wipe up a spill on the stove, I had to teach the kids how to safely do those tasks. The “old me” would have jumped in and taken over, giving the subtle message that they weren’t capable or that I didn’t trust them. Instead, I patiently guided the kids with words of encouragement on all these tasks and so many more.

We tried to plan our menus weekly and each child chose an entrée for one of the dinners. It gave them some power and control over what was served and we all ate the same meal in peace. The ingredients we needed were put on the grocery list that hung on the refrigerator door.

Grocery shopping was done once a week. If you used the last item in the pantry or wanted a special lunch treat or snack, it was your responsibility to put it on the list. If it wasn’t on the list, it didn’t get purchased.

Perhaps the most difficult challenge I faced was discipline. I had to find ways to deal rationally with the kids, especially when I was too fatigued and frustrated to think clearly. When I was in danger of losing my temper, I’d give us all a “time-out,” explaining that I needed some time to think about the appropriate punishment for their wrongdoing.

Determining “who started it” in the children’s squabbles was impossible. There was no way that I had the energy to get to the bottom of the problem. So I learned to send both of the kids to their rooms to figure out a solution to their problem.

At first, it was pretty funny. They would each go to their room and shout to the other one. “I’m never letting you out of your room! You’re staying there for the rest of your life!”

The other one would reply, “That’'s okay! You're going to stay in your room for a million gazillion years!”

However, the angry words soon stopped and the kids began to talk and negotiate a truce. I stayed out of the loop and they learned to solve their own problems. It was a win-win for everyone.

Being a responsible parent has been the most difficult “job” I’ve ever had, and, as I watch them parent our five grandchildren, I have validation that my MS didn’t ruin their lives. If anything, perhaps it made them stronger, more compassionate, and more capable than many adults with less dramatic and stressful upbringings.
 
Diagnosed with primary progressive MS at 32 with a five-year-old daughter and three-year-old son, Shelley Peterman Schwarz worried how her MS would affect her two children. Today Jamie is 42 and Andrew is 40. They’re married with children of their own, and thankfully are healthy. You can contact at Shelley@MakingLifeEasier.com or visit www.MakingLifeEasier.com