Living with loss

The word “transformational” is often used to describe the moment or experience that forever impacts every part of you. My moment came on the warm evening of June 30, 1997, when I stood with Ralph outside my parents’ home, seeing the silhouette of my father and younger sister Rhoda framed in the front porch light and hearing Dad say, “Mom’s been in an accident.”

Mom was a nurse, working for both McMaster Children’s Hospital and the Victorian Order of Nurses (VON), a home care nursing agency. Additionally, she supported medically fragile children in their classrooms at school. Nell De Jonge was a wife, mom, sister, aunt and friend who was determined to support the needs of those marginalized. She baked great bread, and when she wasn’t at work, she was involved in women’s ministry at church or outdoors on a hike.

faith-filled formation

From an early age, Mom influenced my perspective on disability. I watched her and her family care for her brother who was born in 1951 with a developmental disability. Normalizing unique behaviours and demonstrating flexibility for family gatherings were two lessons I learned through their love for Uncle John, affectionately known as Janke. My dad and mom opened our home to others, offering respite for parents and caregivers impacted by disability. Through them, I grew to know disability was not shameful nor a secret; it was just a part of being.

Lament 

When I think about the loss of my mom and my life as a mom of children who are disabled, I’m reminded of how grief can be disabling. My dad’s words, “She’s dead,” stabbed me in the gut that night and still provoke a strangling sensation in my throat today, 26 years later. Similarly, remembering the distraught looks on the faces of Ralph and the medical teams, as I delivered Rachel and later Janneke, tears sting at the corner of my eyes. I can’t ignore the parallels between the nursing roles my mom held then and the services my children need today. We’ve wheeled through McMaster for 17 years, and we’ve accessed VON for both home care and school nursing. I miss her greatly.

Yet, in all that loss, I also know determination. There exists in me a persistence in learning to live with loss and embrace the atypical and unpredictable. I saw it with my mom and her family with Janke, and I saw it with my parents in our home. I hear it still in the voices of my mom’s two remaining sisters when we visit.  My sister Jess calls it #stubbornjoy. 

Tenacity

As we anticipate more changes with Janneke starting high school and Rachel having one more year of paediatric care, I have some trepidation with losing the familiar. Quite possibly what we’ve built over this most recent span of time will be dismantled and rebuilt again. In between the butterflies and kites this summer, I’ll be looking for glimpses of God’s assurance that it’s still going to be ok.