Eight years ago I became a parent for the first time.
Ten years ago I was diagnosed with relapsing remitting multiple sclerosis.
Simple math will tell you that I’ve been parenting with MS for my entire parenting experience. I don’t know what it feels like to parent without a chronic illness. In my head, I have this idea that parenting would be completely different without my multiple sclerosis but who knows if that’s even close to the truth.
What I do know is that my multiple sclerosis changes how I parent my children, both emotionally and physically. Since I’ve had MS their whole lives, there was no point where I ever sat them down and had the “this is what Mommy’s doctor diagnosed her with today” talk. It’s just been part of their life for the last 8 years. Our discussions about my brain and it’s dysfunctions are a common source of conversation (and occasionally laughter) around our home. However, there are some intentional decisions I’ve made to help our kids process the information and create an environment where they don’t fear my disease and it’s implications.
A couple of years ago, our whole family watched the ESPN documentary called “Catching Kayla”. If you haven’t ever seen it, you need to! It’s a great story of Kayla Montgomery, a state champion track runner, who was diagnosed with MS in high school. The beautiful part about her story is that her coach would catch her at the end of every race. It did a great job explaining MS and gave just a beautiful picture of how this young girl persevered though so many obstacles. My girls STILL talk about it and was one of their first introductions to MS as a disease.
Another resource that might be especially helpful when helping kids deal with a diagnosis is Keep S’myelin, a publication from the National MS Society. We haven’t ever used that with our girls, but the materials look great!
Be Honest, Yet Age Appropriate
My girls see me take my medicines every morning. When they first started noticing me taking them, they were curious what they each were for and why I had to take them. My response? “Well, these are Mommy’s brain medicines that help my brain tell my arms and legs what to do”. If I was self-injecting a medication like I used to, I’m sure there would be even more questions and possibly fear to deal with it. Thankfully, my disease modifying drug is a simple pill along with other medications to help manage my symptoms.
I also try to discuss my physical limitations with them in age appropriate ways. Sometimes I really have to humble myself to tell them why I might not be able to do something. For instance, I might tell them that I can’t play outside with them because it’s too hot but when they come back inside we’ll do a game, etc.
What I don’t do is use big medical words that may sound scary. Unless they ask, we don’t talk about what might happen in the future with my MS. We don’t discuss whether someone might find a cure soon. There will be a time and a place for those big conversations. It’s just not at 8 and 5 years old.
Be active when and how you can
I’m probably never going to be able to run a 5K with the kids. I probably won’t backpack through a national park with them (although let’s be honest- I’m not doing that without MS either). What I can do is serve the runners at their school’s 5k or enjoy vacations and road trips along side them. I can go on walks through the woods or jump in on a backyard game of baseball or soccer on a cool day. It just takes a little more intentionality and creativity.
My 5 year old told me the other day that I was really “good at being an inside mommy”. I won’t lie- that stung. Then I realized that she didn’t mean for it to hurt- it was a compliment. She then went on to tell me all the things she likes doing with me. They were all activities that weren’t limited by my MS and in only a way a 5 year old can, she was speaking some serious truth to me in that moment.
While in many ways MS has limited me, I believe it has helped teach my girls to show empathy to those with limitations. They’re quick to pick up things off the floor, open doors for a stranger, or just realize that we’re all created with a different set of skills and physical abilities. Hopefully, they’ll look back as adults and realize that there were lessons they learned from seeing both the effects to my MS but also learn from how I deal with it. Which encourages me on a daily basis to be both tough and gentle with my abilities, give and accept grace, and live the life God’s given me to His glory.
And if one of them wanted to grow up and become the neurologist that cures multiple sclerosis…..Well, that’d be great too. 🙂