The thing I’ve wanted for Mother’s Day for the last 10 years isn’t material. No flowers. No jewelry. No spa day. I can honestly say I don’t have a single material wish. What I truly want for this holiday — and it doesn’t even have to do with my own kids — is for communities to recognize mothers with disabilities. I’m a mother with multiple sclerosis, and for this special day I’d just like to see a few simple things happen.
I want to park in the handicapped section without an older person, who happens to also have a handicap placard, giving me the stink eye because I took the marked spot. I may look like I’m better off than them, but what does sick look like anyway? If we’re going by stereotypes, I should be the miffed one — I’m younger, and got struck down with a quadriplegia diagnosis in my thirties.
But I let it go because I don’t know this other person’s story, just like they don’t know mine. Although I’d love for other people to wave and smile, rather than make assumptions, when they see me parking in the handicapped spot with my kids.
Another miracle I’d love to receive on Mother’s Day is the power to banish the statement, “I’m bored.” Chronic fatigue is real. I am 110 pounds, but my shell easily feels like 500. I can’t lift my right leg. Take it from someone who used to run marathons and work two jobs. Now my disease doesn’t allow my body to do much after 5 p.m. I can’t play with my kids the way they want me to most of the time. It stinks, sure. But my motto is: just live. There’s no reason to ever be bored. Take yourself outside. The colors are changing. There’s so much to see. Play with your babies. Take your teens to shows.
It also goes beyond boredom. If you have a body that loves you, love it back. Love it all the way. Love your body, no matter what it weighs. Be kind to it.
I only got thin when I was diagnosed with MS. And it hasn’t been the easiest thing to navigate.
Now, that is SICK. That’s what true sickness can do. It’s not always physical.
I want to live in a world where people don’t get skeptical about my sickness or compare sicknesses. Here’s a question that I hear all too often:
“Are you really THAT sick?”
I deal with my condition every day. The last thing I need to do is prove to you how sick I am. Sickness is not a contest. I’d love for the competition to go away (and stay away) from me on Mother’s Day.
Oh, am I supposed to be talking about what I want from my family? I mean, what can they possibly give that they already haven’t?
My kids adapted their playtime for me when I couldn’t move. I became the bridge in their Lego game, lying on the floor as they cheerfully built around me. This is just one small example of many. They also say the sweetest things to me, and always talk to me with the knowledge that I’m more than my disease. Their dreams have lifted mine.
They even inspired my children’s book about them, “Zoe Bowie Sings, Despite Sad Things.”
My husband gives so much, too. He works from home when he can, and always extends his arm when we walk so I won’t fall. He opens my door and puts me in the car. Advocates for those who are ill beside me. Dances!
So while my one wish is more awareness around mothers living with disabilities, I guess I don’t need anything else from my family.
Although … chocolate is always good, right?
Jamie Tripp Utitus is a mama with MS. She began writing after her diagnosis, which led her to become a fulltime freelance writer.. She writes about her experience of coping with MS on her blog Ugly Like Me. Follow her journey on Facebook @JamieUglyLikeMe.