Shortly after Rachel was born, I spoke with a mom who had two older children with disabilities, and she wisely encouraged me not to hide. Her own experience had taught her that people will not help if they do not know the need, and people will not know how to respond unless they hear the story. Because Rachel and Janneke were not able to verbalize their stories, I took that advice and chose to share glimpses of what I called our story. Interestingly enough, Janneke’s sounds are now increasing in volume and range, leading me to wonder if she’s trying to tell me her story.
“I would never quite be the same.” So ends The Dwindling, a personal and quirky account of Janet Dunnett’s experience in caring for her aging parents. Not intended as a spoiler alert, it is a truth woven through the thoughts and stories from Janet’s perspective. Lest we think caregiving for aging parents is gentle and warm, filled with vignettes of wonderful memories, Janet shares the less-than-perfect but very real experience of helping her parents through their dwindling years.
Happy New Year to our readers! This column contains reflections from my days as mom and primary caregiver to the four girls I share with my husband Ralph. Our older daughters, Emily and Sophia, are more than capable of sharing their stories, and we look forward to hearing them some day. In the meantime, I’ve chosen to focus on Rachel and Janneke in these writings.
There’s something quite captivating about the glow of Christmas tree lights. I remember when our kids were young, we would bundle them up after supper for a quick walk through our neighbourhood before bedtime. Many of our neighbours loved to decorate for Christmas, so the girls were eager to go. The look on our girls’ faces suggested there was indeed something enchanting about all the lights set against all the dark.
It’s Saturday morning, and I’m entering my local grocery store. At the doors, I observe an older woman in a motorized wheelchair having an animated conversation with a younger man who refers to her as Mom. She is insisting she have another grocery bag on hand for some items, and he is insisting she doesn’t need it. The patronizing tone in the son’s voice is difficult to hear – and impossible to miss.
A month ago, I moved our oldest daughter Emily into her new room on a college campus. As we packed the van, memories of her first day of Kindergarten crossed my mind. The days of picking out new crayons and pencil sharpeners long past, this time, we loaded up clothing, sentimental decorations, a new shower curtain and a random assortment of dishes and groceries.
When I first started this column in March 2016, I shared that our Rachel and Janneke were not diagnosed; they were instead referred to as medically fragile with complex care issues. In the columns that followed, I have tried to reference their gifts and strengths before describing that which stretches or disables them (and us).
So says Stella Young, an Australian comedian and journalist, in her Tedx Talk in 2014. She had osteogenesis imperfecta and died in December 2014 at age 32. With her disability limiting her to a wheelchair, Stella shared instances of perfect strangers approaching her and stating she “inspired” them.
As I write this column, the iPad is laying in Rachel’s bed; my inquisitive 13-year-old nonverbal daughter is listening to the second book in a favourite series. The passion and inflection of the British narrator’s voice tempts me to step away from my computer and sit with her under the spell of the story.
It’s 6:30 a.m. on a Saturday morning. It’s been four hours since the 2:30 a.m. alarm; every four hours I do a routine check-in. This means repositioning the girls and changing wet clothes and bibs – and sometimes bedding.
March 14, 2019 marked 10 years of being a family of six. As I greeted Janneke early in the morning of her 10th birthday, she turned to grin at me. I could only wonder if she saw this day significant from the others.
NOT LONG AGO, I MET UP WITH a neighbour who asked about Rachel and Janneke, our two younger daughters who are medically fragile with complex care issues. I mentioned that they attend Beacon Christian School – to which she said, “They can do that?”