"Why Are You Using a Wheelchair, Mama?"
The first few times I heard these words from my daughter were about a year ago. She was around 3.5 years old, and not only really noticing things around her, but learning the language to engage with them as well. We were just sort of coming out of the pandemic life, which was almost all of her childhood to date, and we hadn't done many things out and about outside of the house.
Now, as a mama who has struggled with joint pain her whole life and has lived with a formal RA diagnosis for almost a decade, this behavior wasn't different or new for me. My most symptomatic areas of pain and inflammation have been my knees, my ankles, and my feet.
Even with medication, I still have hard days
I've been lucky enough to be on a biologic medication for the last 6 years that has mostly managed my symptoms and has kept me mostly mobile and able to go about my daily life to the best of my abilities; however, that doesn't mean that there aren't events, seasons, or hard days where the pain gets the best of me.
Using a wheelchair to better enjoy events
During the time I've lived with known RA, I've also learned things I can do to protect myself and my joints from exacerbated pain and longer times in my bed or on my couch struggling with recovery.
One of these things is using a wheelchair at larger events or events that would require a lot of walking — things like conferences, events with show floors like Comic-Con, long walking paths, etc. My husband not only doesn't mind pushing me in a wheelchair at these events —because he knows how much it will ease my experience and allow me to be fully present and better enjoy/immerse myself in the experience — but he encourages it and often does the arrangements of calling to reserve a wheelchair, picking it up ahead of time, etc.
Navigating public events as an immunocompromised parent
Now add in our daughter. As a tiny tot, she didn't attend many events because we were mostly in quarantine, playing it safe by staying outdoors or participating in things only in our neighborhood. We tried to severely limit our exposure to germs. As you might have guessed, my RA medication is a biologic, which comes with a compromised immune system and has required extra work to stay safe these last several years.
During the first larger event we brought our daughter to, I tried to figure out how we'd navigate the logistics. My husband couldn't push me in a wheelchair and push our daughter in the stroller. So, I tried to muscle through. I walked the show floor at the conference, pointing out different things to her, stopping only to get her snacks and keep her comfortable. By the time we got back to the car at the end of the day, I was hobbling from pain. We decided that wouldn't work for the future.
Explaining my wheelchair use to my daughter
Events like these aren't super frequent, but we do attempt them periodically. At the next event, we brought a friend to push the stroller, and my husband pushed me in a wheelchair — this was much more ideal. But it was also the first time our daughter asked the question, "Mama, why are you in a wheelchair?"
My husband and I have always tried to be open with her in language she can understand, so our response was sort of a general: "Mama's knees and feet get tired easily and hurt sometimes. Using a wheelchair means mama will have more ability to play with you later on. Just like you sit in your stroller because your legs get tired sometimes." And she was satisfied with this response.
Across the next few events, she got used to seeing me in a wheelchair, and the questions stopped. She understood that it was something mama needed, just like she needed her stroller for a different reason.
Our young child understands better than some adults
This holiday season, we visited an outdoor holiday light show path, and not only was it quite chilly (increasing my RA pain), but I was in an Aircast (stupid continual metatarsal fractures) and the wheelchair was a must.
Since the event, our daughter has been telling her grandparents and our friends that we took up a lot of space on the path because she was in her wagon and I was in a wheelchair. To be honest, the adults in our life understand the situation a lot less than my 4.5-year-old does, but I shouldn't be surprised by that.