Someone asked me recently if I am still sad about the death of my daughter, Natalie. I was surprised by the question and even a little offended. Of course I’m still sad, but when I stopped to reflect, I realized that the sadness has changed in the nearly 12 years since she died.
Natalie was our middle child—the organizer, instigator and peace-maker between her two sisters. She died when she was 9 years old after being treated for leukemia for two and a half years. We had no idea how to carry on without her lively spirit in our family. When she died, we not only lost Natalie, we also abruptly lost the support of most of the health care providers who had cared for her and for us over many years. It was other parents who taught us most about how to cope with that shattering sorrow.
From our friends, we learned to celebrate our lively girl and include her in our lives. Every year, on her birthday, we invite her cousins and best friends to share her favourite meal of Fettuccine Alfredo and rhubarb cake. We can’t give gifts to Natalie, so we give them to our guests instead. At Christmas, Santa still fills her stocking along with those of the rest of the family. On her “Death Day” (inspired by Nearly Headless Nick, Natalie’s favourite Harry Potter ghost), we have a tradition of talking about how we can each do something to make our family better without Natalie.
During the first few years, each of these occasions was an unbearably sad reminder of her death. But gradually, we began to look forward to these remembering-Natalie-traditions. But the first time her best friend couldn’t attend a birthday party, I was devastated. It felt as though some part of Natalie had died all over again.
Then another wise friend reminded me that a 16 year old would likely not have had a family birthday party and might even have outgrown Fettuccine Alfredo. I realized that our remembering-Natalie-traditions could also grow and change, just as she would have done.
On the first Death Day that our family could not be together, we decided that each of us would draw a picture in honour of Natalie, who was a talented and prolific artist. The forced change in tradition encouraged us to explore her passion ourselves and to try something that she loved. Death Day was once the saddest day of the year. But now it is a day of art and creativity.
This past March, we celebrated her would-have-been twenty-first birthday. After living for nearly 12 years without her, yes, I am still sad. But after nearly 12 years, there is space to remember and celebrate the gifts she gave us that continue to enrich our lives.
Valerie McDonald is a former chair of SickKids family advisory council who also volunteers time to speak on palliative support and policies and assist with the research selection committee of TRACPG which the Sasha Bella Fund supports. This reflection is reprinted from the TRACPG's summer 2011 newsletter.