At the end of fall semester, one of my students declared in my Business and Professional Speaking class: “A big shout out to Dr. Iz [me] for keeping it real.” I can’t say it was one of my proudest moments as a teacher, especially given the 15-weeks prior that we had been addressing the importance of formality and etiquette. But then, maybe just like parenting, sometimes my teaching doesn’t quite look like what I idealized-it’s often not neat, tidy or seemingly relevant. After a few months of this shout out from one of my favorite students, I decided it was he who was keeping it real. Even with all the niceties and formalities of the world, sometimes we just have to say it like it feels.
When I last pounded out my lame monthly post for Hopeful Parents, I was hours from admitting our Sylvie back to the ER for more upper respiratory distress. She stayed in the hospital for 4 days, and now oxygen is another mainstay to add to the array of other medical equipment that litters our house. This winter has knocked us on our ass, and we have hit the wall of chronic caretaker fatigue. But even in that moment of sheer distress (e.g. midnight arguments with my long-term partner, assuring Sylvie’s twin sister that is not her fault that Sylvie is sick, having zero tolerance for petty office politics) I try to receive the rawness and realness of my everyday life:
- Sylvie’s sister boldly corrected the woman at the counter of the local science museum when she referred to Sylvie as a toddler. “My sister is NOT a toddler, she just can’t walk and talk” declared her sister. You go girl. Tell it like it is!
- I was near tears at the recent Burlington Mardi Gras parade when a Special Olympics Vermont float past by. The message on the banner: “Don’t Say It” followed by the word “Retard” printed inside a red circle with a diagonal line. The float had a bunch of volunteers and S.O. athletes. I just loved that image of kids with disabilities so out there in the public demanding to be seen as people and not for their disabilities.
- I spent 20 minutes on Friday ensuring that my daughter would be included in the public transportation event to the local chocolate shop—I wanted to be assured that she would be on the bus with her classmates (and that she was going to get her due chocolate!). The school and public transportation staff were great, but it wasn’t how I planned on spending my morning.
- Last month, my sweetie and I shared with some graduate students at our local university what it is like to parent a child with a degenerative disease at the invitation of our fabulous pediatrician. As we left the room and walked down the hall after our discussion, I heard one young woman wailing. Our story is sad. And while I don’t want to make other people cry, I’m glad to share the challenges and successes of caring for our daughter with others in hopes they may learn and rethink what they know about disabilities.
I wish I could be more upbeat these days, but parenting a kid with severe medical needs is exhausting. And if I yell, cry, sleep, drink or eat too much, at least I’m keeping it real. When I take a long walk along the shores of Lake Champlain, or play hard with Sylvie’s twin sister, or sit on a friend’s bed on a sunny Sunday afternoon talking, my life is also real.
Kirsten is a professor of Communication Studies at the State University of New York and the mother of 6-year old twin girls.