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Children Adapt to Mother’s MS Diagnosis

By Shelley Peterman Schwarz

If you are like me, you worry how your MS will affect your children. I was diagnosed with chronic progressive multiple sclerosis 35 years ago. Dave, my husband and I had been married for 10 years; our daughter, Jamie was 5 and our son, Andrew was 3. Being a good and responsible parent is difficult and when you add MS, along with increasing disability, parenting is excruciatingly more difficult and complicated.

I remember vividly the day I was diagnosed with multiple sclerosis. The momentary relief I felt at having a label for all my complaints was immediately followed by “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; Mommy cried a lot and she and Daddy 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. Many nights she'd wander into our room and climb in bed between us.

At three years old, Andrew 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.

As much as we wanted to protect Jamie and Andrew from the news of my illness, we finally told them that mommy had an illness that the doctors didn't know much about and there was no medicine to make her 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 five year old shouldn't have to worry about such things. 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.

Although I didn’t know it at the time of my diagnosis, I had the primary progressive form of MS. What I did know was that every day I was slightly weaker than I was the day before. Each day I needed a little more help. Out of necessity, I had to involve the kids in daily tasks while my husband was at work. But I worried about how the added responsibility would affect them.

During the preschool years there were lots of testy moments and confrontations, like getting ready for nursery school. There were arguments about appropriate clothing for our frigid Wisconsin weather, dawdling at breakfast and getting sidetracked playing with toys. My increasing disability meant I needed help carrying food to the table and wiping up spills. Dressing and undressing the kids in winter garments was exhausting as was supervising their nonstop activity level. When they both gave up their naps, I cried because I still desperately needed mine.