Stella Joy

I've written a couple of times before about a little girl named Stella Joy Bruner-Methven, and I wanted to post more about her now because she had such an impact on the lives of so many people, myself included, that I want her story included on my blog for my children to read someday. I want them to know that this story was a big part of why I became the mom that I am becoming. I believe that witnessing Stella's story through the eloquent words of her two moms on their blog has forever changed the way I will live my life, and more importantly, the way I will parent.

Stella was diagnosed with an inoperable brain tumour in June of 2011, and given three months to live. She was two years and two months old. I remember sobbing over a post where one of her moms said she would never see her third birthday. Well, she did see her third birthday, and her 3.5 year birthday. She lived through the births of not one, but two baby brothers, and named them herself (Sam and Hugo.)

But there was never a time when anyone thought she could survive this. It was just a question of how long. On several occasions, she slipped into sleep for a few days and her doctors and parents thought it was the end. And then she would bounce back, the last time even able to eat solid foods again.

Stella slipped into yet another deep sleep this month, but her heart beat strong and her breathing stayed steady for 12 days. Although she could not be roused, her parents say she showed signs that she could hear them, sticking out her tongue to say yes (a trick she'd learned to communicate once the tumour took her ability to speak) when asked if she wanted ice chips rubbed on her lips, and whining when they stopped reading a story.

For 12 days she lay in her parents' bed while her family - moms, brothers, aunts, uncles, cousins, grandparents, friends - came and went around her. She was never left alone once, and there was still joy and laughter surrounding her. On her 3.5 year birthday, they bought cupcakes and sang Happy Birthday to her one last time. The next day, her brother Sam turned one, and again they celebrated around Stella. The day after that, her cousin turned one, and again, she hung on for one more birthday party.

It was the day after that, October 22nd, that she passed away, in the arms of her mothers and surrounded by family. Her mom says her death was peaceful and beautiful.

We often hear stories like this and of course, we are touched by them. But, like so many other strangers, I really got involved with this one. At times I wanted to turn away from my computer screen, I wanted to stop checking in on Stella, it was all too sad, but I couldn't. And I know now that the reason I couldn't was because I wasn't witnessing Stella's death, I was witnessing her life. Her parents, though they were devastated, gave Stella the most beautiful life you could imagine. When she was still well, they took her on trips and playdates and let her eat ice cream for breakfast every day. When those things were no longer possible, they snuggled up on the couch for months because that was what Stella needed. And when Stella wanted to get out in the world again, they went out in the world again. They once again took her places - swimming, music class, zoos, farms, friends' houses, her old daycare. Right up until the end, they gave Stella what she needed and wanted. At every moment, they were following her lead.

And along the way, something beautiful happened. Her moms, too, found joy in life. Even during this devastating time, they found joy at every turn. And seeing Stella live this beautiful, short life, and seeing that her parents could find the joy in it... well, it made hundreds of internet strangers stop, take a deep breath, and learn the most important lessons about life.

Stella taught us what it means to be alive, to be present in the world. Despite everything that happened to her - her tumour took her physical abilities away one by one, eventually leaving her body weaker than a newborn baby's - she loved life. She never stopped smiling. As her mom said, even when she couldn't smile anymore, her eyes smiled. And she was one determined little girl. One of the most touching stories about Stella - the one that will stay with people forever - is how one day, out of the blue, she demanded (in whatever way she could at the time) to go downstairs to paint with her cousin. She hadn't been to the basement playroom in months but her parents happily took her down. She kept biting the paintbrush that her mom was trying to help her paint with, and her mom kept saying, "No, Stella, we don't eat the paintbrush." And then they realized that Stella wasn't trying to eat the paintbrush. She was using her mouth to hold the paintbrush so she could paint! 

I learned another lesson, too. I learned, really learned, finally, how my mom felt when my brother died. I had some knowledge, at the time, how horrible it was for her. And my knowledge of this increased tenfold when I became a mother myself. But I didn't know what to do when he died, and I never really did know what to do afterwards, either. I always thought the goal was to distract her from her grief. But Stella's moms taught me that I've been doing the wrong thing all along. I need to talk to my mom about my brother, and listen when she talks about him without trying to make her happy again. I need to let her cry. I need to stop trying to cheer her up during the difficult times of the year. I will be forever grateful that I learned this lesson.

Now Stella is gone, and the forums on her web site are bursting at the seams with stories of the lessons we've learned from Stella and her moms and the inspiring support network that surrounded them every moment. How so many parents have found a lot more patience with their kids. We hold them tighter, tell them we love them more often, let them eat junk for breakfast sometimes, enjoy our time with them more, and - this was big for me - fear the future less. I have always had a deep fear of the future, of not having any control over what happens to me, my wife or my kids. I still have the fear, but what I've realized is that I truly don't have any control, so I'm wasting time and energy worrying. It's important to enjoy each day. Whether it's a good day or a terrible day, there are moments of joy in each and every one. Stella's moms found joy in the worst time of their lives, and because they could, and because they shared it, I can, too. The lesson I learned is that I don't have to be scared, because it turns out that even on the darkest days, there will always be joy. At times, in all of our lives, those moments may be fleeting and hard to find, but there will always be joy.

None of this changes the fact that Stella is gone, that these two women have to live the rest of their lives without their daughter. The horror of that is still very real, and my heart was heavy the day after Stella died, when the enormity of her parents' loss really hit me. I truly can't imagine what that would feel like. But now, because of Stella's moms, I know what it means to be strong and brave, and it turns out being strong and brave is not at all what you think. Being strong and brave is to be honest, to cry, to scream, to feel and express the anger and grief and unfairness. Being strong and brave is to acknowledge that you have no choice but to walk the road you're on, and to know that you need help because you can't walk it alone, not when, at times, you can't even stand. Being strong and brave is to still think about your future, and to do something about it.

Being strong and brave is being open to learning lessons from all of that. And being strong and brave is sharing those lessons. Because other people need them. I did.

Rest in peace, Stella. Your life meant something. You made a huge difference in the lives and experiences of many parents all over the world, which will have a ripple effect through generations of parents to come. You will never be forgotten.