Talking to My Children about MS

Even if the sun was shining and the day was warm, I’d cringe whenever I’d drive by the park with my sons. Because I knew my 6 year old would ask to stop.
And I knew I’d have to say no.
I was newly diagnosed with multiple sclerosis, and I had trouble walking. It wasn’t all the time—sometimes I got around just fine, with only low-grade vibrations going through my feet and legs. But other times, especially when walking a long distance, my leg would essentially lock up. I’d struggle to reach my destination—my office, my car.
The worst times were when this happened right before I picked up my sons after work.
It meant that I’d have to be strategic about pick-up: stop and get the 6-year-old from his after-school care program before picking up the 1-and-a-half-year-old from day care. That way, big brother could help with little brother.
It wasn’t my proudest parenting moment, and it’s not easy to admit it even now, more than four years later. As a parent, the last thing you want is to feel like you can’t care for your own children. It’s why I didn’t ask for help at the time.
But if there was a silver lining to that particular struggle, it’s that it opened the door to how to talk to my young kids about my illness. My stepdaughter, a teen at the time, could understand, but my sons were too little to even pronounce multiple sclerosis, let alone grasp the full implications of the disease.
So when my older son would ask to stop at the park, I’d say, “sorry, buddy, mommy’s legs are tingling, and daddy’s not here to chase your brother around.”
For me, this was the best way to start explaining my disease to my kids. They didn’t need to know the ins and outs of the illness, they just needed to understand how the symptoms were affecting me.
I’d also sometimes tell them mom couldn’t walk as fast as usual because of this “leg tingling” (a pins-and-needles phenomenon common in MS, which for me sometimes led to the leg-locking-up feeling—which I later learned is muscle spasticity).
I also often had to explain to them that mommy is really tired—not just regular tired, but exhausted—and needs to rest. Or that mommy shouldn’t be outside in the hot summer afternoon sun for too long.
This is still the phase I’m in with my youngest, now 5. But at 10, my older son is graduating into a different phase, a deeper understanding. It wasn’t pleasant explaining to him that MS is something I will have forever—that even though I feel fine today, I might not tomorrow. But I’ve been proud to watch him grow into an empathetic young man who often notices when I’m not feeling quite right and is ready to help.
I’m sure that empathy is not an uncommon trait for children of parents with a chronic illness. And perhaps it’s another of the few silver linings we can cling to. For all the fears I have about parenting my kids with this illness, I’m most proud of their kind, caring hearts.
Even my little guy displays this. A few months back, when I had to lie down because of fatigue, he sat next to me on the bed and said, “okay, mama. I’ll sit here and get you whatever you need.”
It was a heart-warming reminder that I’m not alone in this fight, and that despite everything, I already have everything I need.
Tags Parenting, Symptoms      2 Appreciate this
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Elissa Dickey

Elissa Dickey lives in Aberdeen, South Dakota with her husband and children. A former journalist, she is now an author who also works in communications at a university.

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  • Ted Dickey   Feb 28, 2018 12:28 PM
    I am so proud of my wife.
  • Eva Moore   Feb 28, 2018 6:49 PM
    Thank you for opening up about something that is hard to talk about. Much love to you and prayers for you always!
  • Erika Evans   Feb 28, 2018 11:34 PM
    I am so proud of you for sharing your story to help others! You are an inspiration! I'm praying for you! Love you!
  • Helen   Mar 1, 2018 6:27 PM
    Thank you. It was as if I wrote this. It is so nice when someone understand you. I was diagnosed two years ago and the mother of four beautiful children. One a teenager the other three are 6 years old and under. So once again thank you for sharing.
  • Lisa Brennan   Mar 2, 2018 10:42 AM
    This strikes a chord with me. My daughters are mostly grown now (19 and 16), but they were only 3 and 10 months when I was diagnosed with MS in 2002. I've been lucky enough to maintain mobility for the most part, except during some relapses and after IV steroid treatments. However, there have been many conversations with my girls over the years --evolving as they've grown -- about the limitations forced on me by chronic illness. They certainly have gained the empathy that you mention.
  • Cari Symonds   Mar 3, 2018 7:30 AM
    Thank you for sharing insight into your journey and for helping others. I'm proud of the strong, courageous woman you are.
  • Avatar
    bubbadog66  Mar 4, 2018 5:54 PM
    Have you ever checked out "The Spoon Theory" by Christine Miserandino? Great stuff!!
    Thanks for your blog i really, really, really relate.
  • Jennifer   Mar 21, 2018 5:45 PM
    Thank you for sharing! I can completely relate to your story. That was always the hardest for me...when we would drive by a playground or park...and I would have to tell my son no we could not stop ... I had so much gulit when my son was too little to understand. Now he is 8 and understands more of what I can and can't do.