Posted by on Dec 23, 2012
Christmas Ornaments- Stella, Sam, Hugo's footprints for their respective first Christmases (2009, 2011, 2012)
Yesterday was December 22. Two months since Stella died.
On this day, Aimee and I were lucky enough to have a Holiday Letter published in the Toronto Star Newspaper (December 22, 2012 page A3). This was made possible by Catherine Porter, and we are very grateful for the opportunity.
Happy Holidays to everyone, may you find peace this season.
You can read the letter on the Toronto Star Website here:
OR, I copy and pasted it here:
Dear Star Readers,
We haven’t met most of you personally, but you know all about us. Many of you have taken the time to send emails telling us how much you cried over the death of our daughter, Stella Joy, and how much you grew to love her. That has meant a lot to us: we had agreed to let journalist Catherine Porter join us on the terrible journey of watching an aggressive brain tumour kill Stella because we wanted as many people as possible to meet our spirited girl in the short time she had left.
We had no idea how long the journey would be, what it would truly mean, or the people it would include. It became so much bigger than us.
Many of you have said that you are in awe of our parenting and courage in accepting Stella’s death sentence. We do not feel brave or special. We are normal, unassuming people who live in a modest bungalow in East York. We bicker about laundry, we watch bad Reality Television, we get frustrated in traffic.
There is nothing extraordinary about us as people or parents, other than the fact Stella was one of the few, unlucky children diagnosed with diffuse infiltrative pontine glioma (DIPG).
There is nothing extraordinary about the decision we made to accept Stella’s death, other than the fact we had to accept it at all. The only treatment offered was six weeks of radiation, which may have prolonged her life but would have reduced the quality of her life in the interim.
We wanted her to live like a regular toddler, not a sick kid.
What is extraordinary, however, is how many people Stella’s story reached and how an entire community mobilized to ensure she lived the best life possible.
We are amazed at how much of a difference Stella was able to make during the 3 ½ years she was alive, and then how very big — almost mythic — her life has become in the telling and retelling of her story.
But at the end of the day, she was just a little girl, and we were just her parents. Countless people have told us that reading Stella’s story in the Star changed them. We hope very much that’s true. But any life-changing moments that people have experienced, any perspectives that have been gained, any joy that has been found, didn’t happen because of us. We didn’t do it. Catherine didn’t do it. Stella didn’t even do it. What did it was the openness and generosity of all the people who learned about Stella’s story and decided to do something in their own lives, or someone else’s, to make it better.
We didn’t change the world. The world changed us.
True change takes a lot of work and a lot of time. It happens almost unconsciously — when you no longer have to think deliberately about something, but it is just integrated in you. We are still working to change — to live more purposefully, to find joy in the small things every day. We are not there yet.
Many of you have asked how we’re doing. There is no real answer to that question. We miss Stella with our whole hearts. We just returned from a 10-day trip to Hawaii. Just the two of us — we left Stella’s two younger brothers, Sam and Hugo, at home. It was strange being alone. But we needed to sleep and weep and retreat. It was lovely and weird and spiritual all at the same time. We felt Stella all around us. We could hear her unmistakable giggle every time a bird swooped down towards Aimee’s nachos by the pool. We saw the colour of her hair reflected in the sunset over the ocean. We felt her soft kisses on our cheeks from the wind when we stood at the lip of a volcano, 10,000 feet up.
We laughed when we remembered her wearing ugly brown crocs all last summer. We cried when we left behind a commemorativemetalStella star in a national park, and when we wrote her name in the sand. We felt our hearts soar and break daily.
After more than a week in the sun and heat, it was a bit surprising to come home and remember that the holiday season is upon us. We were greeted with two 7-foot inflatable holiday decorations on our lawn (a Santa and a reindeer). It was Grandpa John’s idea of a joke. He knew they would horrify Aimee, and they did.
But more important, he did it for Stella. He knew that she would have loved those things. She would have pointed, laughed gleefully and tried to knock them down. We’re quite certain they would have been punctured long before New Year’s. So we agreed to leave them up — because they make us think of Stella. In the absence of having Stella with us physically, we are working to find ways of keeping her in our lives and consciousness.
People have also asked us what they can do to help us, to make a difference, to remember Stella. It took us a while to figure out the answer to this question. As a family, we decided on a few concrete things — decorating her memorial tree outside Riverdale Farm, lighting a candle on the Christmas table for her. But, more broadly, we think the best way to honour Stella would be to reach out to others the way you have reached out to us.
There is grief and sadness and sickness and fear on every block in this city. How amazing would it be to extend friendship to that new co-worker this season, or to call your boss whose husband died three years ago, or to shovel the sidewalk for the lady with chronic back pain who lives around the corner.
Or just send a quick email to someone to let them know you care.
Like many of the words we use today, the roots of the word “community” are Latin — cumwhich means together and munus which means gift. That is what we hope Stella’s ultimate legacy will be this holiday season and beyond — the gift of people coming together. What an incredible mark on the world that is. For all of us.
Thank you for your emails, your support and mostly, for loving our daughter. Stella would have told you proudly, “I don’t like you,” and then giggled loudly.
Aimee and Mishi
Two weeks ago the Star published an intimate three-part series in print and online on toddler Stella Joy and how she and her family dealt with her shocking diagnosis. Read the seriesabout Stella online. Catherine Porter kept a diary as she chronicled Stella’s last year. The eRead Stella is available through stardispatches.com. Readers can subscribe for $1/week, or purchase single copies for $2.99 at starstore.ca.