MS through a child's eyes

Receiving a multiple sclerosis diagnosis is a huge life change, not only for the person diagnosed but also for their entire family. Although each person handles it in a different way, children more often than not experience the largest differences in how they cope. As a parent, it is natural to want to protect your child from having to deal with the harsh realities of the disease. While you manage symptoms and come to grips with the diagnosis, you are most likely also worrying that their lives will be upended. What you don’t realize, however, is that your child may be far better at accepting MS than you, and taking a look at the world through their eyes might even teach you a little something about your own reaction to the disease.

When I was diagnosed with MS, my daughter Emma was only four. Her father, Tony, and I explained as best we could what MS is, but we were not really sure how much she understood. To be honest, I wasn’t coping very well so I probably wasn’t the best person for the job. At the time, I found that her father was the one who looked after her emotional well-being. He had the hard task of keeping our family together. He did not get any help or thanks from me, as I was firmly locked in a cycle of anger and pain.

Although you might think that this impacted Emma, she dealt with it much better than we expected. When her dad asked her how she felt about me being upset and angry most of the time, Emma, in her four year old wisdom, informed her dad, “that’s not mom, that’s the MS.”

All through the years, MS has never really phased Emma. Every year when she starts back to school after the summer holidays, she always tells her new teacher about my MS. One day, I asked her why she did this. She told me she felt it was her job to educate people about MS. She also was very open with her school friends about it, so, for her, it is very normal to be living with MS.

As for myself, I feel like I have grown with MS. I am not the same person I was when I was first diagnosed nine years ago. For starters, I am no longer that angry, scared person I was when I was first diagnosed. Yes, I have my bad days, but I am determined not to let the disease define me. I am more than an illness. I am more than my MS. First and foremost, I am a mother and a partner. My priority is to my family. MS is just a bump on the road. It can’t take over my whole life.

Seeing how my daughter faces MS has taught me a lot. Whenever we go through a hard time, she rises above it. As adults, I don’t think we give our kids enough credit—they are more resilient than we think and just want to be there for us. For the most part, MS doesn’t change how they view us—we are still Mom or Dad; Aunt or Uncle; Grandma or Grandpa. Now, at 13, Emma has much more to occupy her mind than MS. Netflix, shopping and going to the movies with her friends are a big part of her life. Not boys though. At least that’s what I tell myself anyway.