Have Fun, I’ll See You When You Get Home :: Mothering With a Chronic Illness

When it comes to quality time with my three boys, I’m hardly the fun parent. You won’t find me taking family ski lessons or spending a hot summer day playing on the beach. Sure, I read bedtime stories, play board games, bake cookies, and create sensory bins. But because I am a mother with a chronic illness, some aspects of parenting are not only challenging, they’re impossible. Simply put, having multiple sclerosis means I can’t always mother the way I’d like to.

When my husband and I started seriously talking about having a baby, we knew my MS would be a consideration every step of the way, but we were mostly focused on those early stages — how I would feel through a pregnancy, what my labor and delivery would look like, preparing for the risk of flare-ups postpartum. We, or at least I, never really thought about anything past the first few months.

Fast forward six years, and our oldest is obsessed with hockey and fishing, our middle would live on his scooter if he could, and the baby will do anything and everything to keep up with his brothers. And with this third “baby phase” ending, it struck me recently that while I feel sad about it for all the reasons mothers feel sad about a baby turning 1, I’m also feeling a touch of fear. I’m worried I’ll get left behind.

For me, pregnancy and breastfeeding were protective against my MS progressing and even helped some symptoms stay quiet. I also genuinely enjoyed being pregnant and having babies — at least partly because I knew it was keeping my disease as controlled as possible. But then things started to get tricky when there were toddlers to lift, strollers to fold, so many squats getting up and down off the ground all day, and the other physical feats that come with parenting a young one. 

I was somewhat prepared for this and knew my husband and our other support people would need to step in for some of the toddler lifting and stroller folding. What I was not prepared for was how often I would be saying, “Have so much fun! I’ll see you when you get home.” Every time I have to miss yet another activity or outing, it stings.

It has been almost 14 years since my diagnosis with MS, and my disease is pretty active. This means I can’t go out on the ice with my 6-year-old, I can’t ride a bike with my toddler in a seat on the back, and I can’t participate in family nature walks that extend anywhere beyond our backyard. There are days I still struggle to accept these limitations.

I always say that my MS is a built-in opportunity for my children to learn empathy, and I truly believe that. But that doesn’t mean it’s not beyond frustrating to have to say, “Mama can’t today” when my kids want to go to the playground on an 80-degree day. As my boys start to have more “big kid” hobbies and interests, I’m finding those limitations are happening more often, and my kids are experiencing their own frustrations with the situation.

To anyone else who has to explain what feels unexplainable, who has to tell their children they’re unable to participate in a favorite activity, who has to change plans because their body had other ones, I see you. Yes, children of mothers with chronic and invisible illnesses will learn empathy in its truest form — but we could all extend a bit of that empathy to ourselves.