Conversations around ability difference, mobility aids, and chronic illness can be tough with little ones. Their questions can feel big, and many times it might seem like the answers are too much for their young minds to process. But, like so many other types of conversations, some families must face them sooner than they would like.
My family is one of these families. I have multiple sclerosis — a chronic neurologic autoimmune disease with no known cure. I was diagnosed eight years before my oldest son was born, and my symptoms were present more often than not by the time I became a mother, so I knew my children would ask questions from a young age.
Even before my children were born, I felt guilty that they would have to understand more than I thought was fair to them because of my diagnosis. I remember telling my 4-month-old son “I’m sorry” as I rocked him to sleep on a day I hadn’t felt particularly well.
As they’ve grown up the tiniest bit and have started asking toddler-sized questions, I have come to realize that my diagnosis, symptoms, and life with chronic illness is an opportunity to teach them about empathy, flexible schedules, and giving people the benefit of the doubt. That certainly doesn’t mean I don’t have days where I still feel that guilt or sadness that I can’t do certain activities with them. But we’re learning as we go.
One thing I always try to remember about toddlers’ questions is that they are innocent. When a toddler says, “Why do you look like that?” it is because they truly want to know why a person appears a certain way. While this language is innocent, it’s also an opportunity to model a thoughtful response. When my son says, “Why is your leg like that?” when my gait and balance are affected, I’m able to say, “Mama’s leg looks a little different than it normally does, right? That’s because it’s a little harder to walk today so my leg feels really tired.” I have found that specifying body parts or activities that are challenging or painful makes it feel a bit less scary than generally saying, “I don’t feel well” or “I’m tired.”
Similar to a lot of 3-year-olds, my oldest son asks “why” a lot, and this question can be much harder to answer. The truth is, we don’t know why certain things happen in the world of chronic illness and ability differences, and we don’t always have explanations for symptoms that come and go.
This is one of the most challenging parts of chronic illness for adults, so I can only imagine how confusing it must be for a child watching one of their grown-ups experience it. As much as every fiber of my being wants to say, “I don’t know, let’s talk about something else” when my toddlers ask me why I can’t jump on a trampoline, I know I owe them honesty. I also don’t want to be defined by my limitations in their eyes, so I try to say, “It’s hard for Mama to . . .” rather than, “Mama can’t . . .” and always follow it up with an alternate option that we can do together instead.
I hope that being honest, particularly about naming what I’m feeling and what my diagnosis is, helps my children understand. My oldest knows “Mama has MS,” and even though he certainly doesn’t fully grasp what that means, I hope that on some level it helps ease his mind that when he doesn’t feel good, it doesn’t mean he will need a cane or that he won’t be able to walk. It also has helped facilitate conversations about naming feelings and situations, which I hope will continue and evolve as my boys grow.
The short answer is, there is no right answer. There is no right way to talk to children about chronic illness and ability differences, there are no answers for a lot of their questions, and the questions they ask and things they point out can sometimes make us — the people who have to do the explaining — feel sad or uncomfortable. But, the sooner and more often we can have these conversations in an honest way that encourages questions and conversation, the lighter the burden of explanation will be for each person with an ability difference who our children encounter during their lives — and that is a beautiful thing.
Guest author Stephanie Lynch lives on the South Shore with her husband, Tim, and their two toddler boys. A New Jersey native, Stephanie came to Boston to go to college, met Tim her senior year, and the rest is history. She has a master’s in public health with a concentration in maternal-child health and is passionate about her career in research to improve health outcomes for mothers and babies everywhere. She also loves cooking with her boys, spending mornings at the beach, all things classic and preppy, and an extra espresso shot in her latte. Stephanie shares everyday life as a working mom of two little ones, plus classic style, home decor, and her experience living with multiple sclerosis, through her blog Linen & Littles.