By Julie Keon*
There are moments in my life that stand out with shocking clarity. These moments were made up of mere seconds and yet the effect they have had on me makes their duration irrelevant. Although so much of the last 15 years has been repressed or forgotten due to trauma, sleep deprivation or brain fog, there are moments that come back to me so clearly because of what they represent. Of all of the moments that may never be unearthed and of all of the moments that work their way to the surface like a shard of glass embedded in my heel, there are a handful that illustrate the most defining moments of this parenting path. I can recall one of those moments so clearly that if I close my eyes, I can smell the stagnant hospital air and I can feel the weight of my newborn in my arms.
It happened about four months into this treacherous territory of parenting a child with medical fragility. We had been released from the children’s hospital 10 weeks after a traumatic birth led us to the specialized care of physicians and nurses who had a much better handle on what we were dealing with. Going home did not mean the end of this unexpected and terrifying beginning as parents. In that first year, we would make many trips back to the hospital for appointments and would spend a total of eight months of it as inpatients.
On this particular day, we drove into the city to see the neurologist who had watched over our baby girl since her arrival by air ambulance to the Neonatal Intensive Care Unit and who would now follow her in the years ahead. Preparing and packing for one appointment was a production in itself but walking into the neurology clinic for appointments challenged us on every level. We weren’t supposed to be here. I had done everything right in my pregnancy and expected, as all parents do, to have a healthy baby. An abrupt lack of oxygen at the time of birth changed the trajectory of all of our lives in one blessed moment.
After the appointment, I remember standing in the lounge area just beyond the main entrance of the hospital waiting for my husband to bring the car from the parking lot. I had our baby in my arms and a feeding pump over my shoulder. This contraption made it possible for her to eat. At just a few weeks of age it became apparent that she would never eat orally due to the brain injury she sustained so a feeding tube was surgically placed in her abdomen. Aside from the vibrant blue feeding pump bag and that tube of milk attached to our baby’s tummy, I looked like any new mother. I was tired, unsure and trying my best to appear confident.
As I stood there waiting, the sliding doors opened and there she was. A woman, slight in stature and looking remarkably tired and somewhat flustered, walked through the doors pushing a teenage boy (her son?) in a wheelchair that was almost bigger than she was. I looked at both of them as they made their way into the hospital reception area and I was instantly slammed with a tidal wave of anxiety. I turned away and immediately tried to calm myself down. This mother, with her teenage son, represented a future that terrified me and that I did not want to be a part of. I was still in the incredibly hopeful, we-will-prove-those-doctors-wrong stage of parenting a child with a massive brain injury. The woman and her son did not resemble the future that I was still desperately clinging to and imagining as our eventual reality. Deep down, though, I knew that, one day, I would become her and this reality sucked the breath right out of me.
Fifteen years have gone by since that moment at the children’s hospital. Recently, as I was diapering and dressing my teenage daughter, that mother and her son came into my mind. She has visited me in my thoughts many times over the years and it occurred to me, that I have become her. I am no longer that scared, anxious new mother but instead the mother of a teenager who has severe disabilities. I can no longer carry our girl in my arms as I did for many years. I now walk through those same sliding doors at the children’s hospital pushing a wheelchair that aids in our daughter’s mobility. Some days I have it together while other days I am exhausted and bleary eyed just like that mother appeared to be when she walked by me so long ago.
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What I hadn’t realized back then was that as I worried about a future yet to unfold, something profound was being cultivated under the surface. Through every challenge, every close call, every health crisis and sleepless night, little by little, I was transforming and growing in strength and resilience.
The future I had once dreaded is now my present. As a new mother battling anxiety about days yet to unfold, I hadn’t contemplated the evolution that would occur in me as I navigated these years of mothering my medically fragile daughter. Gradually I became a seasoned mother equipped to cope with this stage of parenting.
Now, when I walk by new mothers at the children’s hospital holding their newborns like I once did, I make a silent wish that they will see me and trust that however it unfolds, they, too, will be all right.
*Julie Keon is certified life-cycle celebrant, licensed marriage officiant, death educator, end-of-life doula, hospice volunteer and mother. She is the author of What I Would Tell You~ One Mother’s Adventure with Medical Fragility (released December 2017). She shares her life in the Ottawa valley with her husband, Tim, and their daughter, Meredith.