This is a re-post for my dear friend, Glo, in tribute to the amazing life and soul of her baby, and their loved ones. It’s hard to believe it’s been 5 years. Already. I can’t say exactly how it feels for Gloria, Robert & Rayne, but I would like them to know we remember with them. We share in their heartrending memories and in support of their amazing capacity to move forward in strength, purpose and love for each other and for life. They couldn’t live a better legacy for their son and brother…
I hardly know this young boy who impacted my life and so many others so profoundly. What kid is all that interested in their mother’s friends anyway? And so, I came to know him mostly through her, our Glo.
She is that quintessential statement of strength and courage, which can almost sound like a cliché, but it isn’t when it’s applied to a parent facing one of our worst fears. Which is what happened to her and she, true to character, faced that nightmare fully and head-on.
He was only three years old when they were told he had cancer. It was horribly bad news. Most kids who get this kind of cancer have a pretty good outlook, but for some the challenge will push to the limit. This was to be the case for him.
I can’t imagine having to look at my baby’s sweet innocent face, and into his trusting eyes, knowing what they knew was to come for their son, and try to prepare for that. How unbearable could it have felt to know the awful truth of what was in store in some ways, and not have any idea or certainty about anything else?
The only thing that turned out to be absolutely certain is that this kid had something else too – a hell of a fighting spirit. Those innocent eyes masked a strength that could rival a grown man’s, and that was good because he used it fully. It was what carried him beyond the lines of expectation.
As it turned out, his backup arsenal was also beyond outstanding. His shield of steel was the love and faith of his mother, and his dad and sister were the center of his phalanx.
Phalanx is a perfect word for his story. I’d stumbled around for a while looking for a way to describe all the people who joined the power of this boy’s circle. My son said, “That sounds like you’re talking about a phalanx, mom”. I asked what that was exactly. After he explained, I thought yes, that’s exactly what they are.
A phalanx is defined as a compact or close-knit body of people, a formation of infantry carrying overlapping shields and long spears. Perfect. That’s what they were – overlapping shields of love and spears of hope. The rest of that foundation was formidably filled out by all the family and friends who rallied around them.
No matter their role as those weapons of love and hope, every one of them, including the calvary of determined medical personnel was there in common spirit. All were there to throw everything they could at that God-damned tumour.
They did it well for ten amazing years. It wasn’t a smooth trip for sure, but they fought those ups and downs with purpose. He and his family were also determined to instill something meaningful into what would seem to be a senseless, painful ordeal.
He moved to the center of an organized effort to finally stop cancer in children. He and his family charged alongside an organization called Kick For A Cure, whose role is to fund the research that will finally “kick cancer where it hurts”.
Part of the fight for a full life was trying to be just a boy who could play and learn like everyone else. Why should any child have to fight to be just a 5 year old or an 8 year old? The balancing act to just be and to be a helper in the bigger picture becomes another unexpected fact of life, a new normal.
The day came when balance was made impossible, and it became an effort to just hold on – to a few more hours spent wrapped in the bond of fighters who’ve survived together for so long. To a few more minutes of saying I love you, and for that one more heartbreaking second to look into each other’s eyes.
When children get so sick, when they die, we are all devastated. We cry and feel deeply because for those moments, born to us or not, they all become our babies.
Maybe we ask God or the Universe, why or how? Maybe one day we’ll have all the answers, but for now, at this moment, I need to believe that the Universe said these things to him:
Thank you, Dejah.
Thank you for enduring the pain of the fight for so long.
Thank you doing for so much work in such a short period of time to inform and teach about childhood cancer.
Thank you for all that you’ve given and taught to your mom, dad, and sister.
Thank you for all that you’ve given and shown to your family and friends.
Thank you for the sacrifice you gave to medicine that will one day make this illness less devastating for another child.
Thank you for the way you brought your community together over and over again, and got them all thinking about love, and for reminding them that, it is the only true purpose.
Your work is done Dejah, and it was done in superhero excellence.
You’re finally pain free; dance wildly in joy. You’ve earned it, kid.
You will always, always, be a kick ass hero.
February 4, 2000 – October 5, 2013
Photo by Cher Milne Gennaro, Memories with Dejah
The story of how Dejah affected his community and the people around the world was captured during his beautiful service tribute and in how his story was shared around the globe.