This story was originally published in March 2018 for the publication SAGE-ING – The Journal of Creative Aging.
The Story begins on page 22.
It is a great privilege, honour and joy to be a husband and the father of six children. Like most fathers, I have taken great pride in providing for and protecting my family so it is especially painful for me to accept that I cannot protect my family from suffering, death and grief. Our family has spent much time on the beaches of Shuswap Lake building sandcastles. I never expected that building sandcastles would become so therapeutic and take on such deep meaning in my life.
In October, 2014, my wife discovered a lump about the size of a golf ball on the tummy of my 6-year-old daughter, Bernadette. We took her to our family doctor the next day where an ultrasound showed there was a tumor in her liver and we immediately went to the B.C. Children’s Hospital in Vancouver for further tests. While spending many long days with my wife and daughter at the children’s hospital, numbness set in as we waded through all the medical tests needed to obtain the official diagnosis. It is very painful to hear these words from a doctor: ‘Bernadette has stage 4 cancer. There is no cure.’ We asked how long she had to live and the answer was shocking: ‘There is no way to know for certain; we are guessing months, not years’.
Darkness is a better teacher than light! Great love and great suffering get us to see correctly. Richard Rohr
After receiving the diagnosis from the Children’s Hospital my wife and I took Bernadette and our two other daughters to spend a weekend at the Canuck’s Place Children’s Hospice. We were surprised to discover such a place existed. The team of doctors, nurses and support staff have created a place of refuge for families. They took the time to provide us with advice, encouragement and support. Together, we came up with a plan of how to best care for Bernadette and the staff continued to journey with us until her death. We regularly called the hospice when we had questions. It was reassuring to know they were ready to help any time of day or night. After our weekend at the hospice we then brought Bernadette back home where we cared for her until she died three months later. This traumatic and devastating event brought me to my knees and led me down completely unexpected paths of discovery. The biggest surprise was that Bernadette became my best mentor. Her illness and death have led me to live in ways I didn’t believe were possible and had never experienced before. For example, for the first 50 years of my life I rarely shed tears. In fact, I avoided tears whenever possible, not believing they were valuable or desirable. Bernadette’s short life provided me with an opportunity to receive the gift of tears.
Losing Bernadette was especially difficult because of the feeling of a complete loss of control. The most difficult part of this journey has been watching the rest of my family suffer and feeling completely vulnerable and powerless to alleviate their vulnerability and anguish. It is impossible to put into words exactly what this experience feels like. In some ways, this journey and experience have been a living hell but we have received the love, prayers and support from so many people, many of them complete strangers. It is humbling to have so many people love us so much.
After surviving the journey of Bernadette’s illness and death, I felt a growing desire to do something meaningful with all my pent-up energy and emotion. About six months after her death, that inner desire propelled me into action. I decided to build what I called Bernadette’s castle. It would be something special and something grand! Normally, I would build a small sandcastle at the local beach, take a picture and then walk away. Before building Bernadette’s castle I needed to find a safe building site where I could go really big and know that it would not be disturbed so I had 10 yards of sand delivered to my driveway. I then spent about three weeks transforming the pile of sand into something big and beautiful. Most of my know-how came from YouTube videos and practice. As I worked on it, I imagined how Bernadette was now certainly in a safe and beautiful place and maybe that place was a castle of refuge. I allowed myself to just create what came to mind. I was surprised at the result because I didn’t consider myself an artist. I believe that many of us hold on to a negative self-image and remain reluctant to discover our inherent greatness. In my experience I can see that I have been held back most often by fear, negative thinking and bad habits.
In the past few years I have continued building sandcastles in my community and have been asked to build castles in local parks, for music festivals, for Canada Day and in the shopping mall in Salmon Arm. I’ve discovered how much healing I’m getting from expressing this creativity. I enjoy getting questions from people and the interaction with total strangers. One of my greatest joys is when people approach me while I’m working and they open up and share their stories of grief. I have received so much support from Canuck Place hospice and the local hospice society, my hope is that others might also experience healing by sharing their grief. One of the goals of these sandcastles is to raise awareness about hospice and to raise funds for hospice. The way I see things, every project I work on is giving Bernadette’s life and death deeper meaning. If you want to see more pictures you can visit the photo gallery found at http://thedansereauden.ca/gallery-sand-sculptures/
Bernadette has given me the greatest gift a man could wish for. She was only with us for six short years but her story has touched so many people. I’ve developed the habit of regularly pulling out a picture of Bernadette that I carry with me in my wallet. That picture is a reminder to me that her life is very real and this wasn’t just a dream. When I take the time to remember Bernadette’s life I find that I am better able to focus and live in the present moment as I encounter other people. As I work on the sandcastles I imagine people being touched and inspired by the story. I imagine that people who are having a really bad day, a bad week or a lot of painful events in their lives might find a place of refuge by taking some time to enjoy the sight of a big beautiful sandcastle. Bernadette has helped me to mature and see things in a new way. My tears are a mix of sadness for what we have suffered but also include many tears of joy to know that I am the daddy of this amazing little girl. I am convinced that the gift of tears has improved my vision. I no longer immediately focus on other people’s flaws and faults but rather take the time to consider how much they might be suffering. The irony that too many people miss is that the way we treat others is exactly how we treat ourselves. Healing and growth can only come when we learn to stop doing violence against ourselves or anyone else.
I sometimes imagine, while creating another sandcastle, that Bernadette is talking to me, giving me advice about how I might mature more quickly. In the past, my normal way of thinking and responding was usually, “I am not buying what other people are selling.” I recognize that I’ve been too much attached to that way of thinking. The biggest reason I’m a little smarter today is that my mentor Bernadette has helped me develop a more docile heart – a heart that loves to connect with other people while I build sandcastles!
About The Author
Marc and Patti Dansereau and their six children have lived in the Shuswap since 2002. For over twenty years Marc has worked in software development for various clients including healthcare, life insurance and telecommunications companies as well as a few government agencies. The entire family’s understanding of the need for hospice care grew through the journey of caring for their 6-year-old daughter Bernadette. She was diagnosed with terminal cancer and died of the illness less than four months later in January 2015. Marc’s life has changed for the better because of the generous support received from so many including hospice. Marc has joined the board of the Shuswap Hospice Society and brings a desire to improve the services available in his community and to help families and individuals in need. Marc can be contacted at firstname.lastname@example.org. The website is www.TheDansereauDen.ca