Recently, I picked up my youngest (14 years old) from school. He immediately wanted to know what was for dinner, was his LAX uniform clean, could I cut his hair tonight? Then I got a text from my oldest (18 years old). He wanted to know if I could pick him up from school to come home for the weekend, told me he needed to get a physical to be on the track team, and asked if I had liked his latest Instagram post. Finally, my 16- year-old arrived home from work at 9 p.m. and announced that she needed snacks for a meeting tomorrow, inquired if I had finally signed her up for her SATs, and asked about going to visit schools over spring break.
My children are no longer babies, no longer toddlers, no longer completely dependent on me. But I’m still their mom, and they still depend on me for a lot. They still require time, energy, and thought — all of which can be limited when you’re dealing with MS.
These are some of the parenting “hacks” that I use to get through the day and continue being a mom in the oh-so-annoying way (according to them) that I always have been.
This isn’t always the easiest thing to manage with children around, but stress and anxiety are downright killers for me. When I allow myself to get worked up, in no time flat I can go from having a great day (absent of leg pain and fatigue) to having skyrocketing pain and shaky weak legs.
I used to spend a lot of time and energy on things like what my kids were wearing and cleaning up with their messes, but I quickly learned that these were needless energy sucks. If my 10-year-old wants to declare it “Pajama Day,” who am I to say no? It doesn’t much matter if the clean laundry remains unfolded in the basket and not put away neatly in drawers. It’s still clean. And the dirty dishes will still be there in the morning, and that’s OK.
I want to believe that I can do it all and stay on top of things. It turns out that’s complete and utter bull. I can’t always get it all done, and I do get buried, swamped, and overwhelmed.
I’m not a better mom because I sign up to chaperone field-trips, work the book fair, or host the back-to-school picnic. Those are the things that might make me look like a good mom on the outside, but they’re not what my own kids look at. And my kids are the ones who matter. I have learned to just say “no” and to not feel obligated to take on more that I can handle.
Asking for any form of help has always been a challenge for me. But I quickly realized that engaging my kids in “helping mode” was a win/win. It relieved me of some of my tasks and made them feel more grown up and involved. Doing things because they’re designated as chores is one thing. Learning to do things without being asked, or to simply be helpful, is huge life lesson that MS has highlighted for my kids.
My mother used to call me the “Queen of Distraction.” Now it’s coming in handy. Find distractions (for both you and the kids). Whether it’s simply bringing up another subject or pulling out a toy or game, redirecting moments that are going awry help me keep life on track and all of us happy.
Technology has introduced tons of distractions. I began looking for apps and games that challenge the brain and I play them with the kids. I have a number of spelling games on my phone and will often pull in the kids (or anyone within a 500-yard radius) to help me. It allows us to focus on something else (and apparently we are getting smarter at the same time). Fit Brains Trainer, Lumosity, 7 Little Words, and Jumbline are some of our favorites.
Between the brain fog, middle age, and mommy tasks, I’m lucky to remember anything. Whether it’s signing up my daughter for the SATs, or remembering a pick-up time or the grocery list, if I don’t write it down it’s not likely to happen.
Find a great note-taking app and use it religiously. Currently, I’m using Simplenote and have it set up to send an email each time I add a note, which provides a necessary reminder later when I’m at my computer.
If someone makes a snide remark about my Segway or my disability parking tag, I use the moment to make my kids better people. We talk about how it feels to be judged by other people, and how they should try to empathize with people dealing with disabilities. MS has made teaching them to treat others with respect and kindness a heck of a lot easier, because it provides constant “teachable moments.”
MS can introduce some pretty crappy things into your life, and it can be a scary thing to have a parent who is sick. I’ve always gone about “surviving” MS by using humor, and my kids have embraced that philosophy as well.
Any time something happens, be it a fall, peeing my pants in public, or a bad flare-up, we all scramble to find the funny in the situation. Over the past 10 years, I have encountered more unexpected, awkward, and embarrassing moments than I could have ever imagined, and our family memories include all the great jokes that have stemmed from them. Even a bad fall will more than likely lead to a good story, and eventually some laughter.
Knowing what’s expected and what’s coming up can help reduce stress and anxiety for all of us. When we arrive at my parents’ house for our summer vacation, the kids always have a million and one things they want to do. I’m not even sure we could get to them all if I didn’t have MS! Talking about it and making a list of what we will and won’t be able to do gives everyone clear expectations. List-making has become one of the things we do in preparation and anticipation of the pending trip. It allows my kids to know what they get to do during the day, and it allows me to know exactly what I need to do to get through the day.
From the very beginning, I’ve been open with my kids about MS and all the side effects that come along with it. I figure if I’ve had to deal with their pee and poop for years, they can at least hear about mine for a bit!
Although it’s a mother’s instinct to not want to burden your kids (and I hate coming off as whiny or weak), I’ve learned that it does more harm than good to try to hide a bad day or flare-up from my kids. They see it as me lying to them, plain and simple, and I’d rather be known as a whiner than a liar.
MS can redefine your life in an instant … and then decide to mess with you and redefine it again tomorrow. Learning to roll with the punches and adapt are both necessary skills to have when living with MS, but they’re also great life skills my kids will take forward in life.
No one is perfect — we all have issues. And if you say you have no issues, well, then that’s your issue. MS brought many of my own “issues” to the forefront. Showing my kids that I’m OK with them, that I can embrace them and my failures with laughter and smiles, is a strong message for them.
No one chooses to get MS. There was no “checking the wrong box” on the application for life. But I certainly choose how to live my life and how I navigate each bump in the road with my children in mind.
I want to show them how to move forward, how not to be victims, and how not to accept the status quo if they want more.