The other day, as Janneke was being unloaded off her bus, her bus driver told me she was having trouble wiping Janneke’s slime. Many times last year, as I would push Rachel across the street to her school, the crossing guard would tell me that Rachel had spit up and needed to be wiped.
Both meant well but did not understand that Rachel and Janneke lack strong muscles in their mouth and throat, causing them to drool instead of swallow their saliva.
Drool is a real part of our day. Though we don’t reference it as slime or spit up, it is very much a part of Rachel and Janneke. When I walk the girls out in crowds, I am conscious of how wet their chins or shirts might be. I stop frequently to wipe their faces and change their bibs. Sometimes, Rachel is able to wipe her lips and chin with her own bib, but both girls rely on us to clean their faces regularly.
As it is with most of their care, I try to put myself in their chairs and wonder what I would want. I act quickly, in part because I know to expect a negative reaction from onlookers. Very few people can hide their discomfort of drool.
I remember when we first addressed the issue of drooling with the medical staff. Our paediatrician sent us to a saliva management clinic. I had no idea there was such a thing. We learned there were some measures we could take to reduce the drooling, but they were invasive with no long-term guarantees.
We currently manage the drool with bibs. Both Rachel and Janneke go to school with 15 clean bibs attached to the wheelchair; each girl goes through 25 bibs every day. We’ve got a wholesale account with a bib company in Colorado that provides a modest price point for bibs that complement their outfits and seem almost age-appropriate.
However fashion-conscious the bibs may try to be, drool is not so fashionable. It’s messy.
More than a phase
Before Rachel and Janneke were born, my own experience with drooling was limited to my two older neurotypical daughters when they were infants and teething. I thought of it simply a phase they left behind, as they grew older.
The concept of a phase came to mind when I read Bronwyn Berg’s story on CBC’s “Out in the Open” recently. As a result of a fall, she suffered a brain injury that has led to paralysis and lack of body control. I am drawn to interviews such as hers because it helps me to catch a glimpse of how Rachel or Janneke might feel. Being able-bodied until her mid-40s, Berg is conscious of what she can no longer do with her body. She recounts that frustration by comparing it with having a cold or being pregnant – both times, the body goes through a phase where it is only temporarily limited. Her status is potentially lifelong, hence the frustration.
“I don’t even have control of my imagined future. We’re all in some ways temporarily able-bodied, because if we live long enough we’re all going to be disabled at some point. I think I had to kind of let go of even the idea of control. I don’t have it.”
Quiet and ordinary
Several years ago, as we prepared for Rachel’s transition into her community school, we wondered how Rachel’s classmates would deal with the drooling. It didn’t take long for the kids to show us that drool was no big deal. My husband Ralph remembers clearly a time he saw one of Rachel’s classmates casually wipe Rachel’s face with her bib. It was one of the boys in her class and it was during chapel; he quietly leaned his arm over, gave her wipe and then carried on, as if that was ordinary. Maybe this relaxed perspective is just a phase – and things will change as Rachel and her peers age, but perhaps familiarity in the present can breed acceptance in the future.