The Challenges of Parenting Kids Who Don't Yet Understand My Multiple Sclerosis

It was a morning like most parents of young children experience all of the time. My husband and I had been up all night with kids having nightmares/needing water/feeling too hot/too cold/too tired. We were both already exhausted from our daily responsibilities, and wished for an extra 15 minutes of sleep. Still, the three kids were awake, and one of us had to wake up. “I’m just so tired,” we said in unison.

I pulled out the big guns, looked him in the eye, and said, “Your tired is not my tired.” He nodded and got out of bed.

Parenting with a chronic illness is not a task for the faint of heart. I’ve read multiple sclerosis (MS) described by others as feeling like you have the flu all the time. That is true for me on the really bad days. On the so-so days, MS means weak feet and ankles that don’t move the way I tell them, coupled with the feeling of a charlie horse in my calf being stabbed by a jagged knife. Nice visual, right? Even on less painful days, MS means mood swings and careful calculations of how far I can walk without needing a rest. For me, MS always means brain fog on a hot and humid day, and time slowing down as a fever spikes on a cold and windy day. Without a doubt MS is always fatigue and often exhaustion. Even well-controlled, it’s kind of a crap shoot.

Being a parent with MS has additional challenges. Especially a full-time stay at home parent of twins plus one. My kids don’t really understand that I have MS. They don’t get that I can’t just bring them for a hike with their friends, or run to the park down the road. I can’t explain to my 3-year-olds that I can’t sit on the beach in the sun on a hot day because my body will shut down. My kids get mad that I need to do pilates and meditate for at least an hour each day just to make sure my body can get me to bedtime. They get frustrated when we can’t agree on a restaurant because I can’t eat any food on the menu that complies with my allergies. They don’t understand why I can’t bolt across the playground if they get hurt or stuck on the monkey bars.

Being a parent with MS has also made me creative. I know my physical abilities are limited, so I improvise. I’m extremely good at driveway chalk art, and I excel at play dough (both making and sculpting). I am proud of my read aloud performances and my Lego creations. I’ve become really good at healthy baking and impromptu science experiments.

I think having a parent with MS has made my children independent, brave, resilient and somewhat understanding (they are still little kids, of course). My daughter is so compassionate, and offers endless snuggles on challenging days. My youngest plays independently so well, sometimes as if he knows I need just to rest for a minute. My oldest struggles with my physical limitations (like when I can’t play soccer with him),  but I know it’s because he understands more than my little ones. When I walked him to school this year for his birthday wish, he hugged me and said, “I knew you could do it.” This is not every day. But it is some days.

My sister-in-law is also an MS warrior, and we have had many conversations about MS and type A personalities. We even joke that every person we know with MS is or was type A. It’s a control thing. A perfectionist thing. A full blown wake-up call that we can’t all go 100 miles per hour 24/7 and not burn out. Even those of us who excelled at that lifestyle get slapped in the face sometimes.

I don’t know what my husband’s tired is. I don’t know what your tired is. All I know is my tired is not like yours, and today I needed that extra 15 minutes.

Follow this journey on Mom Seeking Balance.

The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. Check out our Submit a Story page for more about our submission guidelines.

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