29 msfocusmagazine.org Life with MS When MS is a Family Affair Reflections on Raising Kids When You Have MS By Shelley Peterman Schwarz When I was diagnosed with MS in 1979, my husband Dave and I had two children – a 5-year-old daughter and a 3-year-old son. I didn’t know at the time that I had the primary progressive form of the disease. Nor did I know that, over the years, I would slowly lose the abilitytowalk, stand, transfer, dress myself, and would need help with personal care. Even though I had only minor changes in my abilities at the time – slowed running and finger movements – I worried about how my diagnosis would affect the kids. Opening the lines of communication Children are perceptive. Even though they were young, they could tell that something bad had happened. One night, Dave and I gathered our courage and told the kids that Mommy had an illness that the doctors didn’t know much about, and there was no medicine to make Mommy better. Our daughter’s first question was, “Mommy, are you going to die?” That night I cried myself to sleep thinking that MS had robbed my children of the carefree childhood they deserved. Kids who have a parent who is chronically ill have more worries, responsibility, and pressure than other children. When we didn’t share information, the kids conjured up all kinds of fears – some of them were worse than the reality – and, we were inadvertently teaching them to keep secrets and withhold information from us. We learned to be open and honest. Even today, questions get answered no matter how difficult or embarrassing. Dave and I won't pretend that nothing’s wrong. We must work together if our family is to survive. And, we must continue to remind our kids that it wasn’t anyone’s fault that I got sick; it just meant that we needed to be there for each other a little more often. I also learned that sometimes the kids were afraid to ask questions or talk about my MS. At times like these, it was important for our kids to have someone – relative, family friend, clergy, school counselor, etc. – that they can talk to if they have questions or worries they think will upset you.