Dejah, The Warrior

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.

Dejah Milne
February 4, 2000 – October 5, 2013

dejah

Photo by Cher Milne Gennaro‎, Memories with Dejah

 

RL

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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.

 

With a Little Help From My Friends; Paul Curran “The Invisibles” Part 1

While I’m off batting away demons, some friends have come to bat for me by sharing some pretty amazing survival triumphs of their own. I am so happy and grateful to share them.

Think you’ve heard of some tough years? Read on for a chronicle of unbelievable, stunning setbacks and lifesaving ennui.

This is a two-part tale of an incredible trip to save one’s sanity along with body by the beloved blog-o-sphere cheering and writing champion, Paul Curran.  

paulcurran2015.-2As I lay restlessly in the hospital bed, a plan began to form. I was here for internal bleeding, one of many, many complications that had cropped up from my cancer treatment.

It was under control but I knew what it meant – I had lost my right kidney, which we all knew was happening and came as no surprise. An ultrasound had confirmed that there was but slim remnants of that organ.

This had been a rare side effect of the radiation treatment – a treatment that was really a pact with the devil. In my case it was exceedingly effective and had destroyed the cancer, but it also created a list of horrendous side effects from the destruction of my kidneys to temporary impotence and many others in-between. I was now officially a dialysis patient and would remain so forever, barring a transplant. That was hard to accept.

This was the final straw, and the worst was that I KNEW it was not the end of the side effects – which the literature says can continue to appear up to 25 years after treatment.

quotation mark 1At 45, I would pretty much be at the end of my life before I’d be done with the potential lifespan of side effectsquotation mark 2.

In the preceding year I’d spent all my savings on a degree that I finished just in time for an economic downturn; got laid off from my job because with the new degree I was overqualified; ended a 12 year relationship which meant giving up my house; was diagnosed with colon cancer and underwent radiation, chemotherapy and three operations.

I’d also suffered major treatment side effects including a colostomy, temporary impotence, a fistula between my bladder and rectum and then endured the many, many issues that crop up with dialysis such as multiple operations, scopes, colonoscopies, endoscopes, too many more to list.

Along with all of that, the engine of my car blew up. I was unable to work and with no funds left, I finally had to draw welfare.  The final topper, I had to move from where I was boarding because my landlady (not much older than me) died of a blood clot in her sleep.

I started drinking too much and clearly recognized that I was suffering from severe depression – certainly a state of mind that was natural given the few years of my life.

I had seriously contemplated suicide but didn’t have sufficient desire to follow through – sigh, a failure even at that. Ha! I needed help, of this I was sure and while lying in that hospital bed I decided it was time to get some help.

As difficult as my health issues had been over the previous few years, I had gotten excellent care and anything I desired treatment-wise was readily available. For instance when I came out of the last operation and recovered, I realized that they had cut through my belly button.

This meant nothing to me, but when my surgeon presented himself and asked if all was OK, I responded with: “My belly button is gone”! I was being funny, obviously having survived the cancer and surgery, my belly button was immaterial, but he took me seriously. “I apologize”, he said, “I can arrange for a plastic surgeon to rebuild your belly button and it will be covered under OHIP [the government health plan which normally did not cover non-life threatening plastic surgery].”

Invisible Beginnings…

Expecting mental health care to be as carefully and meticulously addressed as physical health care, I requested a psych evaluation – my intention was to eventually get sessions set up so I could talk my way through the depression and get a hand up back to normal.

In physical health care the doctors were so thorough that I sometimes had to turn down tests or watch for duplication. I had never requested help that I did not enthusiastically receive.

My requests for a psych evaluation went unanswered. I knew that the hospital had a whole psychiatry floor filled with patients and psychiatrists, but try as I may, I could not get one to come to my room.

After a week of asking daily, two interns showed up – doctors in training – who were not psychiatrists or even psychiatry students, but rather were doing a rotation in their training for a few weeks in psychiatry.

These students were typically kept busy doing case histories and such. I thought perhaps this was the route to a real psychiatrist, so I was cheerful with them and we chatted for an hour or so while they took careful notes. (They were humorous at times in their naivety and when I complained about the impotence, they asked how I knew.  Of course, I pointed out that I was sequestered here in the hospital so obviously it was an inability to masturbate – at which they turned all red, stuttered and moved to another topic).

And then nothing happened…

-Paul Curran

————— You can find Part 2 here ————–

Dejah is Soaring

The bagpipes were playing and the Red Serge of two RCMP officers were present when we arrived for the service.

Hundreds of us gathered to say goodbye for now to Dejah; our hearts heavy as we looked at each other knowing this made it more real.  It was time to acknowledge that one of our babies had moved on.  He came to us through Glo and Bob, but we all saw how he was family to many more, some he hadn’t even met, but to whom he became beloved nonetheless.  Such was, or rather, is, his beautiful spirit.

The air was a mix of warm expectancy and wistful anticipation, the kind where we needed to say to ourselves – hold it together here.  Just hold it together at least until you can take a seat.  We pinned on little yellow ribbons in support of beating childhood cancer as we lined up to sign the guest book on our way in.

There was so much love gathered today through Dejah that at times it was overwhelming.  They were not tears of grief, it was the fullness of hearts spilling over.  All got lifted up with all the messages of love spoken by those who took turns to share their feelings and experiences with him. His sister Rayne couldn’t have had a better letter of sibling love to share with us.  His Uncle Dwayne spoke to that part of us that loves with a parental heart.  Family friends shared how their lives have been impacted by him and his family.

We watched a video that displayed how much life that young spirit lived in between the bouts of inconvenience caused by cancer invasions.  It was astonishing to realize how much life he packed into the short thirteen years he was to be here.  It seems miraculous actually. Through those pictures we saw how much he loved to laugh, and he showed what really living was about, even with insurmountable challenges.

One of his best friends, Tre, stood up and told us, in the way only a kid can, what it was to be Dejah’s friend.  He told how Dejah was a video game king that regularly brought his opponents to their knees.   Tre made us laugh as he admitted he was one of those friends who felt like crying when Dejah wanted to play a video game because he knew he was going to get wiped out within minutes.  He reminded us of what it means to be a kid when he described how they would put Dejah into a baby cart at the grocery store and run until it fell over, and then they would fall over laughing.  We were overcome by Tre’s beautiful recounting of his friendship, and from the wisdom, far beyond his years, that he gained from it.

Dejah was the typical hockey-obsessed Canadian kid – one happy to throw a dig at his soccer loving friend, Nuvin, in good-humored contempt.   This is especially funny because Dejah was the inspiration for the start of a fantastic organization, started by that friend, called Kick for a Cure.  They work to raise awareness and funding for research of childhood cancer treatments – mainly through annual soccer tournaments.

He was an inclusive caring boy who lit up the hearts of so many with a remarkably warm smile.  That was an often mentioned point.  He laughed, and loved, and played the hell out of life.

He showed, even today, that to really live is about grabbing the moment we have, this one right here and now, and making it as worthwhile as we can.

Grab the opportunity to smile and laugh at anything you can. Do whatever it takes, even something as crazy as recording yourself elaborately eating your last bite of a sandwich.  Just. Do. It.  You have no idea how funny that will be some day.

It wasn’t an easy life for Dejah, and just like the rest of us, he had some days that made it too hard to smile.  His lesson isn’t that life will always be easy, it’s make the most of it when you can.  Strive to make the most out of what you do have, while you have it.

All too soon, the celebration was nearing the end.  We were all given tree saplings to plant in his honor and then we were given blue helium-filled balloons.  It was time to symbolically release our fears and pain and send out instead, our love for Dejah and for each other.

We cheered as the balloons rose and we watched as they drifted up into the sky, up and up, and then somebody realized a distinctive shape to them.  Look, Caroline said, they’ve gone into the shape of a heart, and they had.  Somehow that didn’t really seem all that surprising.   It was just another addition to the moments that display the power of Dejah’s spirit.

An earlier post I wrote about Dejah has, so far, been read over 1,100 times on seven continents.  Those are the reads that I can track, the ones that I can’t probably drive that number into the thousands.

It’s astounding to realize that a seemingly average young boy from Eagle Ridge in Coquitlam has touched so many people around the world.  It boggles my mind to try to comprehend that his spirit has literally surrounded the planet.

Glo and Bob, that spirit that was to be such a gift to so many came through you, and you nurtured it until it became whole in its perfection, until it was time to be released.  You are to know that you did well.  You did very, very well.

Dejah's second last Facebook post

Dejah’s second last Facebook post

RL

The family requests in lieu of flowers that you consider making a donation in Dejah’s memory to (your choice):

Canuck Place Children’s Hospice:
https://payment.csfm.com/donations/canuck_place/donate/
or
Kick For A Cure:  http://www.kickforacure.ca/donate-to-kfac/