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In the Shadows: Book Excerpt

by Julie Keon on November 21st, 2017

I am anxiously awaiting the passing of this week as next week, I will receive the revised and expanded edition of my beloved book “What I Would Tell You~ One Mother’s Adventure with Medical Fragility.” I have updated and tweaked the existing chapters from the first edition but have also added 12 new chapters. The book is graced with a glorious fresh look as well as a new Foreword and reviews. I have written a section in the book entitled “What I Would Tell You About Preparing for the Inevitable.” This was a challenging section to write and should come with a trigger warning. I felt that since it is a reality for so many of us that it was necessary to tackle this topic that we often choose to shrink away from. Here is an excerpt from that section from the chapter “In the Shadows.”
Excerpt from “What I Would Tell You~ One Mother’s Adventure with Medical Fragility.” Chapter 36
“I was raised in a home where birth and death were openly talked about and viewed as a normal and necessary part of life. From the time I was very young, we attended wakes and funerals because my parents taught us that it was the right thing to do and because my sisters and I often ended up singing in the church choir. I have never felt fear around death, and I don’t back away from talking about it openly and being in its presence.
When Meredith was born, I felt Death lurking nearby and I knew that my time with her would be limited. Before we understood the depth of her brain injury and before her neurologist broke the news about life expectancy, we were aware that this beautiful child’s life would likely not outlast our own. For the first few years this knowledge sat front and centre in our minds. If we ever allowed ourselves a moment to exhale and pretend our lives were as normal as everyone else’s, reality would punch us in the gut with close calls and frantic rides to the hospital in the back of an ambulance.
In the days that followed each of these close calls, we would wander around in shock and horror at how quickly and abruptly things could change. I remember being hyper-aware of her smell and every sound she made. I would take countless photos of her, grateful for the opportunity to capture her through the lens of a camera. Should another close call occur without warning, at least I would have up-to-date pictures to remember her by.
I would have conversations with her and tell her that although I could not bear the thought of my arms without her in them, I understood if she needed to go. I always assured her that Tim and I loved her so much that if dying was something that had to happen, we would let her go. I don’t know how much she understood, but these heartfelt conversations happened again and again each time I felt Death come near.
After we were referred to Roger Neilson House and Meredith was deemed palliative, I began to imagine scenarios of her death. What would it be like? How would it happen? Would it be sudden or lengthy? Would we be in the hospital or at Roger Neilson House?
I also contemplated how I would be afterward. I reasoned that since we have always known that we would likely outlive her, somehow I would be able to “handle” it okay. I remember speaking to my counselor about it shortly after we learned of Meredith’s short life expectancy, how I matter-of-factly told her that I was more worried about Tim than I was about myself. I would be fine, I said. She looked at me and nodded, knowing that my denial of the enormity of what was to come was protecting me for now.
In the early days when things were excruciating for Meredith, I believed that death would come as a relief. Since there was no relief to be found, it was only natural that my weary mind would go to such lengths to imagine her having comfort and peace. I didn’t want her to die, I just wanted her to have a break, and dying seemed to be the only way she would achieve that. Those days were like hell on earth, as I tried to navigate a road that had so many washouts, detours and sinkholes. I just didn’t know how she (and we) could cope with it all day in and day out indefinitely.
Shortly after Meredith’s tenth birthday, things changed drastically when one medication miraculously controlled the nocturnal seizures she had been dealing with for several years. For the first time in a decade, we were getting uninterrupted sleep. I remember keeping track as though they were gold stars on my chart of life. Look at us … 93 nights of sleep in a row! Meredith’s health stabilized and life got a little easier. Death seemed to retreat into the shadows, and we basked in this time knowing that it could reappear without warning.”
©Julie Keon 2017

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