1st Sep, 2002
Shelly Peterman Schwarz
Real Living with Multiple Sclerosis
"MOMMY, ARE YOU GOING TO DIE?" asked my 5-year-old daughter, Jamie. My heart broke as I looked into her pleading, tear-filled eyes.
My husband, Dave, and I had debated for weeks whether or not to tell Jamie and Andy, her 3-year-old brother, about my recent MS diagnosis. But the children could sense something was wrong. Outgoing little Jamie didn't want me to leave her sight. Happy-go-lucky Andy began sucking his thumb, something he had stopped doing months before.
One night, Dave and I gathered our courage and told the kids that Mommy had an illness the doctors didn't know much about and that there was no medicine to make her better. That's what prompted Jamie's question.
As I tried to fall asleep that night, I kept hearing her question over and over. I felt helpless to protect my beautiful children from the realities of life. I was angry that my illness threatened to destroy the carefree childhood they deserved.
I tried not to let my limitations infringe on the children's lives. I don't think they thought anything of the fact that I had them bring me their clothes so I could sit when I dressed them. Andy made a game of collecting the laundry, which I could no longer carry. He would string laundry baskets together and pull them like a train.
As the years progressed, I needed more help. When I drove the carpool, i didn't have enough strength to walk to the different classrooms to fetch all the kids. Jamie collected the members and their belongings. I can still see her juggling her own things along with the school projects the carpool kids couldn't manage. She was only 7 years old.
When Jamie was 9, I remember dropping her off at the doctor's office to retrieve a wheelchair. After I transferred to the wheelchair, Jamie pushed me to my doctor's office. I felt grateful to have such a helpful daughter but worried that I was putting too much responsibility on my child, especially when the receptionist asked Jamie, "Who is her appointment with?" I think Jamie liked being recognized as "the person in charge." I, of course, was devastated to be perceived as the dependent person.
The children hated the stares from passersby when I began using a three-wheeled electric cart. Because Jamie and Andy knew what it felt like to be different, they were caring and empathetic, always reaching out to the "new kid," the overweight classmate, and the loner.
A Sense of Independence
When I could no longer drive, Jamie and Andy had more responsibility than their friends in terms of getting themselves to lessons and activities. They rode their bikes everywhere. However, they continually pushed the limits on where they wanted to go. Could they take their bikes downtown or to a friend's house on the other side of the highway? Although proud of my kids for being so responsible, I was exhausted and worried by their continuing need to try new outings, because I couldn't rescue them.
Because my energy was severely limited, whenever we went on a car trip, I slept in the back of the van. The kids were Dave's navigators and learned to be excellent map-readers.
At 14, Jamie jumped at the chance to shop with Dave for a new car, a task with which I usually helped. (In 2 years, she would be driving and wanted him to select a really cool car.) When it came time to purchase her first car years later, Jamie did so by herself.
Because of my limitations, I often had to guide the kids verbally through complicated procedures like threading the sewing machine and assembling a computer system we ordered by mail. Because I couldn't jump ip and take over, the children gained self-confidence. Andy loved being my hands because he could tinker with mechanical things. Jamie found it amusing that, in later years, her college roommates regularly asked her, "How do you know how to do that?"
Twenty-two years have passed since Jamie asked me if I was going to die. Today, I no longer worry how my MS has affected Jamie and Andy's lives.. because I know.
Andy, now a civil/environmental engineer in the Peace Corps, has helped build an aqueduct in an isolated village in the Dominican Republic. As he wrote to us recently, "I was lucky to grow up in a family like ours where I had lots of advantages. Now it's my turn to do something for people who aren't as lucky as I was."
When disappointments and roadblocks have challenged my children, they have both reacted with wisdom beyond theii age. As Jamie recently told me, "I don't get worked up over little things because I know what real problems are."
I may not have been able to protect my children from the realities of
life, but they've learned to trust themselves, believe in their own self-worth
and to know that they can survive despite life's tough challenges. MS may
have taken a lot from me, but it has made my children the strong, capable,
and caring young adults they are today.
© 2002 Real Living with Multiple Sclerosis