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The Mind F*&k of Life Expectancy

by Julie Keon on December 2nd, 2019

I have pondered the term “life expectancy” for about fourteen years since we learned, after a sudden close call, that Meredith’s life would be significantly decreased due to her medical fragility. It was something the doctors had known since her birth two years earlier but did not express to us.

The early days. December 2003

They recognized that there was only so much new parents should have to come to terms with initially. It was just five days into our adventure of parenting that we learned Meredith had experienced a hypoxic event that caused a severe brain injury. Her official diagnosis, after an MRI, was HIE (hypoxic ischemic encephalopathy); most likely leading to life-limiting cerebral palsy. I had a sense, right from birth, that I wasn’t going to have a long time with this child.

In those early days, this awareness interfered with my ability to bond with her. It was a primal response to protect my heart from shattering should I get close to her only to ultimately lose her. This shifted at some point when I decided to jump in with both feet and love her fully and fiercely regardless of the final outcome.

We stumbled our way through those first two years shocked, bleary-eye, profoundly sleep deprived and emotionally wrecked. It was a test of resilience, strength and mostly, survival.  There was no manual, no crystal ball, no parenting classes…….just sheer determination and forcibly placing one weary foot in front of the other.

My memory fails me when I attempt to recall the intensity, complete madness and struggle of those first months that somehow turned into years. Details have had their edges softened by the gift of time and I am no longer haunted by the countless traumatic events that made up our beginning as parents.

And then, one August afternoon, when Meredith was almost two years old, she essentially stopped breathing. She gasped only five breaths per minute into her tiny lungs. This came on abruptly and unexpectedly. We called 911 and after being rushed to the closest ER, we were on our way to the Children’s Hospital of Eastern Ontario. It was then that we were told Meredith’s injured brain was impacting her respiratory system and these sudden events would continue. At some point, she may not regain her ability to breathe. It was after several of these events that a life expectancy of age 7 or 8 was predicted and we were referred to a new pediatric hospice in Ottawa called Roger Neilson House 

The knowledge that your child will only live within an approximate time frame is both a blessing and a curse. We were acutely aware that she could die at any moment and we watched her as though she were teetering on a narrow ridge between life and death. After one of the many close calls that occurred over the years, I would be hypersensitive to every movement, sound and behaviour she had but not in anticipation of another close call. It had more to do with a deep awareness that permeated my entire existence that life with her was going to be unpredictable. Death would be the inevitable outcome and since I didn’t know when it was coming, a close call would be a not-so-gentle reminder that her days were numbered. I remember studying her and taking mental snapshots of every detail of her physical body. There are copious amounts of photos and video clips in the days that followed a close call. It was a useless attempt at outsmarting death. If death were to come when we least expected it, at least we would have a surplus of up-to-date visual records of her.

The challenge of life expectancy is that you find yourself living in each moment with tremendous gratitude while being overwhelmed with guilt in the moments you feel like you just can’t go on. Each birthday is celebrated with a sense of accomplishment and a big “F-You” to death. There is joy in knowing you have made it another year which is quickly followed by the realization that you are one step closer to this beautiful life coming to a close.

Then a miraculous thing happened…….Meredith turned 7 and then 8 and we landed in what we lovingly refer to as the ‘bonus years’. This is a time when your brain must make sense of this new reality of when the race continues after the expected finish line. It was in this new territory, when she was around the age of 10, that doctors told us that she would live to be 15 although not likely past the age of 12. And so, we found ourselves shifting gears again and accepting this new fate placed upon our daughter.

And now, her next birthday is upon us. It is a major milestone as she celebrates her Sweet 16 on December 5th. It wasn’t in our wildest imaginings that Meredith would not only double her initial life expectancy but would surpass the second life expectancy placed upon her. We find ourselves in the land of ‘bonus years’ once again. Although we took these life expectancy predictions with a grain of salt, they still nestled into our psyches and cast a shadow over our lives. We got on with living for the most part, but the knowledge that we would outlive her played like a silent film reel in the background. It was always there but if we turned our back to it, it lost some of its power.

This time, we are facing a future that we never anticipated. Adulthood looms before us and although many would celebrate this, we feel some anticipatory anxiety in Meredith’s unexpected aging. As she grows older, so do we and with that comes a higher risk of facing our own heath challenges. Even though this was something we have always been aware of, the reality that Meredith could very well outlive us, has pushed its way to the front of the line where our fears reside. On October 19th, I was involved in a car accident that could have just as easily ended my life but didn’t. The perspective gained from that experience was both terrifying and invaluable.

People contemplate how one surpasses their life expectancy and Meredith’s longer-than-expected-life has often been credited to the exceptional care she has received and by the love we have given her. This may play some role in it however, I have seen too many children, who were loved and cared for beyond measure, die suddenly in their sleep or after contracting a simple cold virus complicating the health challenges they were already coping with. There are children who are taken off of life support who then surprise everyone by living for many more years. And there are the children who appear to be shutting down, death close at hand who months later, have stabilized; their parents forced to switch gears again to focus on living.

To be brutally honest and blunt: this whole notion of a life expectancy is a bit of a mind f*&k.

We have learned in subtle and sometimes harsh ways that none of us really know when our time is up. Of course there are signs that our end is near but by then, we have one foot across the threshold into the land of the dead and there is no turning back.

In the meantime, there is just one thing we can do; only one thing we have control over and that is to LIVE. Until that last breath leaves your lungs, you are alive. You may be actively dying however in the meantime you are still living. And that is how we will continue to move forward: celebrating LIFE with an awareness that death is always nearby. This is not morbid or dramatic, it is the reality for every living thing.

So, Happy 16th Birthday, Meredith! We have come a long way, baby, and my wish is that we continue to travel this path together with love, determination and hope for however long we have.

Photo by Brian T. Walters Photography Summer 2019

******Excerpted from Julie’s next book out this summer 2020*****

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8 Comments
  1. Kathy Theriault permalink

    Wow! Just wow! Your writing is incredible. Thank you. I have 2 children in similar circumstances. Joshua passed at 13. Tommy, who is younger, recently turned 22. We spend everyday trying to give Tommy as full a life as possible, while always being aware that this may be the last time and that attending things outside the home may lead to the last cold. Always a balancing act!! It is true, also, that fear of passing before our children. But not just that, I am so so fearful of not being physically capable of his care anymore. Just this small excerpt has spoken to me do much, I can’t wait to read the rest!!

    Kathy

    • Julie Keon permalink

      I hear you, Kathy!! Not being able to care for our daughter or having her outlive me terrifies me more than anything.

  2. Gwen Sparling permalink

    Julie, this is so beautifully written. Nathan has too passed his life expectancy. We were told that he wouldn’t live beyond five but will be celebrating his 8th birthday in February. Like Meredith he too is a fighter and continues to thrive. I live in fear every day for that horrible phone call that can come at anytime. Just like you and Tim though we continue to live and to cherish each moment. I don’t think that people who are not in this situation can fully understand what it is like. Thank you for helping all of us to understand what it means to have a medically fragile child or grandchild. xoxo

    • Julie Keon permalink

      Thank you, Gwen! It is a whole other life that unless one experiences it firsthand, it is difficult to fathom. I wouldn’t have it any other way, though.

  3. Barbara Mair permalink

    Thank you for the wisdom of your experience. Such wise words for everyone. I look forward to reading your new book.

    • Julie Keon permalink

      I will make sure everyone is aware when my next book is available! This winter will be a busy one writing and preparing it for a summer release! Thanks for following our story!

  4. Eleanore Keon permalink

    Your words are heartwrenching honest and inspirational. You both are a force to be reckoned with in your dedication to your sweet Meredith and your zest for life. I will keep you All in my Thoughts and Prayers as you continue to forge on with LOVE, hopefullness, hard work and mindfulness of life in general. Big hugs

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