Some moments are seared onto your mind. For me, one of those was an otherwise normal day as a new mom to a beautiful four-month old little boy: the day that I got a call from my neurologist diagnosing me with multiple sclerosis.
When the call came, though I was already exhausted and stretched too thin as a new mom, I felt a wave of relief. Finally, I had an answer, after two years of knowing something about my body just didn’t feel right. When I hung up the phone, my husband and I hugged and said we’d figure it out. I had to stay the healthiest I could for this little boy who had entered my world just months earlier and broke my heart wide open.
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.
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.
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.