

Here's what it's like to be a parent with multiple sclerosis

With MS, it's not uncommon to "look fine" when you're anything but.
/ Source: TODAY


The author, with her son, was diagnosed with MS when he was an infant. Courtesy of Heather Millen


In simplest terms, multiple sclerosis is an incurable disease where the immune system attacks the protective sheath (myelin) that covers your nerve fibers. It can cause problems with vision, balance, muscle control, and a wide range of basic body functions. The disease affects everyone in a different manner. To add insult to injury (literally), MS is one of those so-called “invisible” diseases, where it’s not uncommon to “look fine” to the outside world, which can be tough psychologically as you battle your own body every day.

Deciding whether to have a second child was a tough choice for Heather Millen and her husband. Courtesy of Heather Millen

It’s been eight years since my diagnosis. I would love to say that I’ve been stable, but as things go with chronic disease, my symptoms and pain have progressed. A few years ago, that knowledge weighed deep on my husband and I as we had to make one of the hardest decisions of our life — whether to have a second child. There was a lot to weigh: Would we be bringing another child into the world that might one day get this disease (the cause of MS is unknown, but experts believe there’s a genetic component)? How would taking care of a second child affect my daily symptoms and my long-term health?

We had our second child, and I wouldn’t trade that blue-eyed, curly haired toddler who radiates joy for the world. I wouldn’t do it any other way. But my MS has gotten worse. In the early days, I had the “pins and needles” feeling in my body and some loss of sensation. Now, those are the “good days.” On the bad days I have muscle spasms and pain, with exhaustion so great that I can’t get out of bed.

Every mom knows the heavy burden of guilt, and it’s magnified by a thousand those days when I have to say “Mommy can’t” to a little boy who wants to go to the zoo, have a friend over, or just hang out with his mom. As a family, we have a lot of movie nights cuddled up together on the couch under the same blanket. Still though, one of my greatest fears is that my sons’ memory of childhood will be how mom napped all the time, instead of all the good days, the days I could.

Heather Millen's second son 'radiates joy.' And even though parenting with MS is difficult, she hopes her kids remember the 'good' days.Courtesy of Heather Millen

That sweet baby napping on the day I got my diagnosis is now a smart, funny, energetic 8-year-old who increasingly has questions about his mom’s disease. We do our best to explain it in the simplest of terms; he listens and then often runs off to play with LEGOs or his latest passion. Sometimes on the bad days, he’ll crawl into bed to cuddle me and say, “I’m sorry you feel bad, mom.”

The most unexpected gift of my illness is watching him grow into such a sweet and empathetic person. In those moments I realize, no matter what the future brings, we’ll face it holding on to each other.