Life with MS

When my two children were young, I always felt tired and sleep deprived. Jamie and Andrew were normal, active infants and toddlers, but they were not great sleepers. I still vividly remember how my husband Dave and I took turns sleeping-in on weekend mornings. It did help, but I looked forward to a time when the children were more self-sufficient and needed me less.

When Jamie, 5, and Andrew, 3, were in preschool, I was diagnosed with multiple sclerosis and the word “tired” took on a whole new meaning. It was impossible to keep up with the children no matter how much sleep I had. I had to find new ways to take care of the children given my limited energy and stamina. If health problems limit your ability to take care of your little ones, perhaps some of my tips might help you.

1. Find a space in your house that can be used as a playroom. You can keep your eye on the kids and the “mess” they create is contained in one area.

2. To eliminate packing the kids up and taking them out, I invited another mom and child over. These moms were also my friends and knew of my health problems. We’d sit where we could see the children and visit while they played.

3. At times, I hired a neighborhood child, as a “mother’s helper,” to come over after school to play with the kids. I was still in the house should they need me. However, I might be resting or having my “quiet time.”

4. From the time the kids were very young, we played board games while I reclined on the couch or was lying in bed. When I couldn’t reach or grasp the game pieces, the kids moved the pieces for me.

5. When the children wanted to have a friend over to play, we talked about who would be a good choice. (Some of their friends needed more supervision than others.)

6. When we could arrange it, the kids were involved in indoor sports, (ice skating, gymnastics, tennis, soccer, swimming, etc.) especially during seasons when they couldn’t play outside. Since I was no longer able to drive, I asked other parents if they would have room in their carpool for my child. People were amazingly kind and inclusive. Because I felt awkward asking for help, I offered to help pay for gas.

Today, my children are grown up with children of their own. As a grandmother, I have embraced the “Digital Age” of computers, smart phones, and 24/7 cable TV with more than 200 channels on all sorts of topics. Technology has added a unique new twist for today’s parents (and grandparents). Since I still can’t depend on my head and heart to agree with my energy and stamina, I use technology to keep the children engaged. Whether it’s watching a video together, playing an educational game on the iPad, using YouTube videos to learn how to do something, or researching information of special interest to one of the children, I’m spending quality time with my darling grandchildren and I love how we are making memories and learning new things from each other.
 
Shelley Peterman Schwarz lives in Madison, Wis. She is the award-winning writer and author of 7 Tips for Making Life Easier books, A columnist for the Wisconsin State Journal newspaper, and a monthly guest on the CBS affiliate in south-central Wisconsin, (WISC-TV) on News 3 at Noon. She was diagnosed with primary-progressive multiple sclerosis more than 30 years ago. She said “even though I'm severely disabled due to MS, I lead a happy, unlimited life. I've made peace with the many loses that I've had.”