Disability

For those unfamiliar with my column, I’m a mom to four great girls. Caring for neurotypical teens is not without its challenges, but I have chosen to focus my writing primarily on my two younger daughters. Rachel and Janneke are neurodiverse with specific medical needs that create an added layer of complexity to mothering. Juggling their care alongside engineering the home routine keeps me more than sufficiently busy.

To follow my previous column (CC May 11), our family has appreciated having a community nurse return to our home for weekly hours. I am thankful for the help with medications, pain management and extra time over the dinner hour. Though a sense of familiarity in routine has returned, I cannot ignore the persistent feelings of discontentment. Rachel and Janneke cannot verbalize this to me, but they are missing the informal connections with classmates.

As I write this, our family is preparing to welcome a nurse back into our home after suspending our community nursing services for the last five weeks. The stories in early February of a contagious yet elusive virus created concern for us with the possibility of a community transmission into our home. Our younger daughters, Rachel and Janneke, are part of the vulnerable sector in this province, and our caregivers also work with multiple clients and in long-term care homes.

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.

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.