ELOISE - THE INTERRUPTED LIFE XVII by Eleanor Shepherd

One of the happiest people that I know is a little eight year old girl who has already suffered more than many people do in a lifetime. Her name is Eloise and I find it difficult to think of her without smiling, as it is such a joy to be in her presence. Her arrival was a huge interruption in the life of her parents and close family, not because she was not expected and desired, but because it was only when she was born that they discovered that she came with an extremely rare genetic disease called Coffin-Siris Syndrome. The diagnosis was that she would be physically and mentally handicapped with severe complications. The reality is that with her parents, she has been a true warrior and has overcome huge challenges and brought incredible amounts of joy to those around her. 

Eloise’s father, Graham is a good friend of our son, John and showed his practicality in dealing with tough situations in providing a track suit for John to wear, when he left the hospital in Burlington, Vermont to go by air ambulance to Toronto where he would undergo rehabilitation therapy after breaking his neck in a car accident. I had become so accustomed to seeing John in hospital attire that I never thought of providing clothes for this trip. 

This kind of practicality shown by Graham has I am sure served him well as he has dealt with the many difficult situations faced by his daughter. She spent her first sixteen months in the hospital and there were many days when her survival was threatened by one of the many complications of this syndrome. Yet buoyed by the love and encouragement of her parents and family she pulled through time after time. 

When she was finally able to go home at sixteen months, her parents, Graham and Genevieve had to create a nursery that looked more like a hospital room, as they prepared to anticipate any health crisis without having to immediately return to the Children’s Hospital. By then they had become quite experienced in her care through the months they spent at her bedside, learning from hospital staff. 

At that point, Graham was able to step back a little and provide me with some insight into his reactions to this interruption. 

He and Genevieve both enjoyed their careers but also really wanted to have a family. This did not happen as quickly as they desired so when they discovered that Genevieve was pregnant they were delighted. It was only one month before delivery that they were informed that there may be a problem. Like most couples awaiting their first child, the niggling fear always was present that something might go wrong. For them it did. 

I loved the way that Graham responded to my question about his faith at the time. He clearly stated that he was a person of faith, and followed that up in response to my question about what his faith looked like with such an honest response that reflects his generation so well. He described it as a mixture of Christian, Spiritual, Humanism and Christian Humanism.  I smiled as I realized that he was admitting what few can, that he has been influenced by many different ways of thinking and he cannot put his faith in a neat little box with all the right answers. 

What I most appreciated was how Graham has been so grounded in his approach to an incredibly difficult interruption. When I asked about what his dreams were he spoke of learning to enjoy every day without thinking beyond the next one. Survival is for this family a daily victory. When asked what the most important thing in his life was now, Graham assured me that it was to give their daughter and their family as much love and support as possible. A year and a half ago, Graham and Genevieve and Eloise welcomed Édouard, her healthy little brother into their lives. 

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During this Covid-19 lockdown, in spite of the risks for someone with the fragile health of Eloise there has been reason to rejoice. Her family were able to post a video on Facebook that shows Eloise taking her first tentative steps, accompanied by little brother Édouard.  What a beautiful sight!  Again my spirits have been lifted by the child who ushered an interruption into the lives of her family and friends that has enriched each of us because of her beautiful spirit. 

Word Guild Award
2011

Word Guild Award
2009

Word Guild Award
2018