“This will define you.”
I resented these words from a friend when my youngest son, Rakan, was diagnosed with a very rare pediatric cancer at age five. I didn’t want to hear them. I wanted to hear how I should be positive and how he’d be fine. I didn’t want my story, his story, to be defined by cancer.
I struggle today with whether my friend was right. But of course he was. This defined me. This defined Rakan, who we lost one year later after a battle that only a superhero could have won. And this defined my family. But it’s not all that defines us. This is not our only story. It has taken me time to understand this, and, I assume, it will take a lifetime to come to terms with the loss we’ve suffered.
When people ask me to write about our experience with pediatric cancer – every parent’s worst nightmare – I always write the same things. I write about the statistics. I write about research. I write about our village. I write about hope. I write about how unimaginable losing a child is.
But something happened this year that reminded me that this story isn’t about me – something grownups forget sometimes.
Rakan would have turned eight on April 20th. For the entire month of April my husband and I were filled with intense thoughts and feelings. It’s inevitable. These thoughts tend to be mostly painful. As much as you want to spin a birthday into a day of celebration—and the spin is important—there’s no getting around how hard it is.
We assumed our older son, Zaid, who is 11, would want to be in charge of deciding what we should do as a family that day. It was important, in our minds, that we give him the option of having a small birthday celebration, going somewhere fun, or doing nothing at all. Bedtime has always been the best time to get real feelings out of him—it’s when he’s at his most vulnerable and likes to talk. So one night I gathered up the courage to remind him of Rakan’s birthday. He surprised me by telling me he knew, of course. He very quietly then started asking me questions, as though he had been waiting for this moment. Such simple questions that were like a punch in the stomach because they reminded me that he too was going through what we adults were going through.
But in a much more interesting way, Zaid was thinking about the present and the future, not the past.
He asked how old Rakan would have been. He asked how tall he would be (we measure the boys on their birthdays and the marks live on in his closet) and what grade he’d be going into. He was nervous because he didn’t want to upset me, but he was clearly desperate to talk about his brother, something he very rarely does. I asked if he missed Rakan and he very softly said yes and “I wish I could play Fortnite with him. He’d be so good at it.” I tried not to cry but then surrendered and just kept talking through it. We talked about who Rakan’s favorite teachers would have been, what subjects he’d like, and so much more.
After Zaid fell asleep I walked into our room and told my husband about what had just happened: how that tiny conversation with our son taught me so much about processing, about how we’d been thinking about it all wrong, and how we’d been spending so much time figuring out how we feel that we had forgotten that our son one room over was keeping him alive in his head, and will forever. Memories will come and go, Zaid’s brain will keep some, discard some, and make up others, but that’s OK. There’s magic in that.
Since that night, Zaid has started unlocking his grief in a way I couldn’t have imagined. He participated in an event in honor of Rakan at the hospital unit where he was treated, a seemingly impossible feat that he handled with maturity and grace. He quietly started wearing two #TeamRakan bracelets.
Last week while going through his school work online, I found an email in his inbox with the subject heading “Sorry For Your Loss.” I opened the email to see that he found out his teacher from last year had lost her mother, so he sent her an email offering condolences. It breaks my heart that he can relate to people who have suffered loss in a way children shouldn’t have to, but it also made me think perhaps this is what my friend meant. That it changes the course.
So almost three years after the diagnosis, two years after losing Rakan, does this define us? Sure, maybe. But is it our only story? And is it only my story? No. And it took an 11-year-old to teach me that.