Friday, December 11, 2015

Dancing in the Rain and Brookifying the Dash

A long silence, I know.  This post has taken quite a few weeks to write.  Since October 24th, when we attended Brooke Malakoff's Celebration of Life, I've been trying to write about my response to that day and to childhood cancer. 

It HAD to be written but no matter how I rearranged the words, they weren't "right" and they weren't enough.  The blog waited, frozen.  Today, I finally acknowledge there never will be a perfect way to express the impact of meeting the young people I describe below, but I will try, regardless.

I am going to share this post with the meme Orange You Glad It's Friday (thank you so much, Maria), since it does happen to be Friday today, and there is more than a little orange scattered throughout the post.  However, for this week only, I am going to think of it as: Orange You Glad It's ANY Day!

Some of you might immediately know who we were thinking of as Bill "danced in the rain" a couple of weeks ago on a very rainy November day.  
We had never done that before.  We discovered even the literal translation of the words requires a bit more effort than we had anticipated.  The truth is that there's quite a difference in perception, depending on the temperature of the rain, whether you are really dressed for it, and whether or not your dog happens to be especially miserable in it.  Never mind whether, as in my case, your arthritic joints would have preferred a little warm-up, rain or no rain :)
"Dancing in the Rain" was a concept first introduced to me by the family of Lilee-Jean Putt (Dec. 5th, 2010 - Sept. 6th, 2013) though the original quote is attributed to Vivian Greene.  
"Life isn't about waiting for the storm to pass.. it's about learning to dance in the rain." For me, those words will forever be associated with the way Lilee-Jean's parents chose to pack all of the love and laughter and happy memories they could into their daughter's short life.  And, talk about facing the most difficult conditions imaginable, when a beloved child is terminally ill. I wanted to take that lesson from this beautiful family and apply it to my own life.  It comforted me that something of Lille-Jean would be preserved and passed on.  Even Black Jack, who hates the rain, could be encouraged to find some pleasure in it.
And, I hoped by writing this post to offer some sort of comfort to families that have lost loved ones.  I wanted them to know that their kids' spirits have reached distances they surely could never have anticipated.  But, even as I write that, these words from a woman who lost her beloved son hit home this morning.  Her comment on the passing of Seanny (just a few short weeks ago), 
Image result for sean, cancer, legolandyet another child caught in cancer's cruel grip and now forever ensconced in my heart, echoed a view that keeps creeping into my thoughts, no matter how much I try to oust it: "I wish we could learn to appreciate the value of life, without our children having to be the ones to teach the world that."  Seanny is shown at the right.  You can read more about him here.

I echo that lady's thoughts for sure, but I will all the more fiercely live my life by the lessons taught by those kids, not to waste a moment of their precious lives.  Who would have anticipated that strolling through Granville Island in August, 2012 would take me to the world of childhood cancer, one I didn't want to recognize but couldn't ignore.  It all started with a young busker's beautiful singing voice. I had begun to observe and appreciate my world more closely a few years earlier, after meeting Bill in 2007, starting a blog and delving into photography with his encouragement.  Then, when he became seriously ill, the lesson to appreciate every good moment was intensified.  But, as most of us will know, it takes continual reminders to form life habits, and Lilee's example was followed by that of Brooke Ashley Malakoff (November 27, 1994 - October 17, 2015).

I could write for days about how tragic it is that Brooke and Lilee-Jean and Seanny are no longer with us, but I'm guessing they would think that quite a waste of precious time.  They'd probably tell me to "dance in the rain" or "live my dash" instead of wasting anger on something that, at least until we figure out how to clean up our world and/or have a research break-through, will continue to take a high toll on living beings. So, I'd like instead to celebrate those young lives and their continued influence on mine.  See that orange hat?  Well, Bill suggested I try it on.  We were at Chapters-Indigo Book Store at the corner of Granville and Broadway on a day that might have made us grumpy.  A noisy fire alarm testing process in our building terrified Black Jack and made it necessary to stay out of the  building for most of the day.  We needed to find some way to pass the hours outdoors while still finding a few warm, dog-friendly places to rest from time to time.  Book stores are not what they used to be.  Mugs, CD's, clothing..  just about every product you could imagine, including that orange hat, were on display alongside the books.  Black Jack was warmly welcomed and there were cozy reading corners set up that encouraged people to settle in for a nice read, so we selected Chris Hadfield's An Astronaut's guide to Life on Earth  and spent a most enjoyable half hour reading aloud to each other.  We liked the book so much, we ordered a copy for our Kindle, and finished it during our evening read-aloud-to-each-other times.  And yes, I tried on the hat, eliciting laughter and the realization that a day we had been dreading was actually now a happy adventure.

Looking at that hat now reminds me of these captures of Lilee-Jean.  She surely knew how to appreciate a happy hat and an opportunity to laugh.  As you can see, I still have more to learn from her to really get that laughter right :)
For those closest to Brooke and Lily, the ones who can barely breathe in a world without their physical presence, I worry about the hypocrisy of claiming to have learned from them.  In fact, I was only in Lily's presence once, Seanny's once (while he was sleeping) and Brooke's twice.  But, perhaps that will give you some idea of the strength of their personalities and message.  And, full disclosure.  Although I vow never to have a negative thought again, they do still creep into my head space sometimes, and there are still days when the weather is a little too cold or too rainy and I find myself whining inwardly.  But those negative thoughts are banished more and more quickly, and when I'm tempted to whine about the weather, I remember how lucky I am to be able to be out and about in any weather.  Sometimes, I think even their loved ones may not fully understand the vast distance these children's spirits continue to travel.  They make their way across continents and across time, passing from one generation to the next, even via people like me, who could never claim to have known them.  I fully believe those spirits are making, and will continue to make, the world a better place.  I think of Brooke and Lilee-Jean and Seanny whenever a small moment makes me happy, because that is a part of what I learned from them - to appreciate the small stuff.  I think of them when I see a rainbow (though for me, rainbows are big stuff), as I did on October 10th, four days before Brooke was admitted to hospital for the last time. It was hard to believe her treatment had been palliative for about a year; she drew smiles and laughter from those around her wherever she went and whatever she did.
Perhaps you've heard of The Dash, a poem by Linda Ellis.  I hadn't. 

Its message inspired Brooke and so she shared it with her friend, Carmen, who shared it on Facebook.  It was printed on Brooke's "Celebration of Life" program as shown below.

I caught snapshots of Brooke twice when she emceed the BC "Gold Ribbon" Childhood Cancer awareness events in September 2014 and September 2015.  In the picture below, taken less than a month before she died, Brooke (in the blue jacket) hugged her dear friends and fellow oncology patients, Carmen and Danielle, after they sang a great rendition of "Fight Song" by Rachel Platton. 
Carmen not only sings but also composesShe wrote this song for Brooke and posted it on Facebook with these words: "For my angel Brooke, i wrote you a short little song because it was really hard to find the words and music to express how truly beautiful you were but I know you are at peace now. Thank you for teaching me so much, and never failing to be the best sidekick of all time."  It's a beautiful song.  Here's the link one more time.  I've listened to it many times.  I love it.  It reaches my heart over and over, reminding me of the terrible loss of potential when children die, and of the pain inflicted when cancer survivors witness the death of friends met during their illness.  And yes.  It reminds me to "live my dash" while I can.

I don't know who took the photos printed in Brooke's "Celebration of Life" program but the photographer did a wonderful job of capturing the sparkle in her eyes and the sheer joy in her smile.

It was Lilee-Jean who led me to Brooke.  Remember the beautiful voice I mentioned at the beginning of the post?  Well, it belonged to Lilee's father, Andrew, and I followed it like a child lured by the Pied Piper, though I was some distance away.  In fact, I was ready to board the aquabus for home, but couldn't draw myself away from the music.  When I found him, I sat on a bench for a while, soaking up the gentle lyrics, sweet melodies and velvety-textured voice.  Later, hoping to find more of his singing on line, I learned instead of the battle he and Lilee's mother, Chelsea, were waging for their daughter. I began to read Chelsea's blog and finally attended a picnic given by Lilee's family to offer followers a chance to meet her.  Her grandmother, Mary, was there and we became friends.  I learned that Mary doesn't take friendship lightly.  We lived an hour's drive apart and Bill, recovering from his own cancer treatments, no longer had a vehicle!  Mary took it upon herself to contact me whenever she could.  She traveled to Vancouver often, usually to visit and comfort children and parents met during Lilee-Jean's treatments.  Sometimes, she was able to  meet for coffee and a chat and little by little, we came to know each other better.  However, when she invited me to my first childhood cancer awareness event, I didn't jump at the opportunity.  It seemed too sad to learn about more kids facing such a horrible disease.  No, I wasn't keen, but it was an opportunity to spend some time with Mary, so Bill and I went.  And yes, I found it sad, but I also witnessed a camaraderie and playfulness that was unexpected.  An already cruel disease was sentence enough; these kids and their families were not about to let cancer also steal their ability to laugh and love. It was great to spend time with Mary..

and it was amazing to see how the kids that told their stories or sang together were busy getting on with life, acknowledging that cancer was a part of their reality, but also showing us that they weren't defined by their illness.  There was such a sense of their concern and love for each other, and a sense, too, of how much fun they found in each other.  Brooke is just right of center, wearing the gold-colored t-shirt.  We heard from her and also from her mother, each telling their story with honesty and courage.
At that event, I realized that Brooke had the kind of empathy and supportive nature that made all the kids around her comfortable and happy to share the stage with her.  It took until the following year before I fully absorbed the knowledge that childhood cancer is very different from adult cancer.  I posted about that here.  I believe there are small ways that each of us can make a difference to improve the odds for kids fighting cancer, and many of those ways have the potential to help cancer-afflicted adults as well.  Looking into our own hearts to see how we can help is probably best, since individual strengths and concerns motivate each of us in very different ways.  My personal focus comes down to two main points:
1. Lessen pollution (almost always have my own cup with me, ride my bike, use public transport or walk most places, eat vegan, avoid plastic shopping bags).  Plastic is a particular horror.  I quote from this site: "Tiny plastic beads used in hundreds of toiletries like facial scrubs and toothpastes have even been found in our Great Lakes—the largest group of freshwater lakes in the world! Giant garbage patches (one TWICE the size of TEXAS) can be found floating around in the oceans." I am convinced that elements from plastic get into our food chain and cause some of the mysterious cancers afflicting vulnerable babies and children (the ones that cannot be attributed to lifestyle choices like smoking and eating processed foods).
2. Make a donation earmarked to help Dr. Paul Sorensen, a Vancouver doctor, continue his research.  This year, our Xmas shopping, except for the children on our list, will go to that cause, as I've learned that he may be on the brink of a discovery that could give kids with Sarcoma a better chance of survival.  I know about him because of a little girl named Greta.  "Greta was 5 years old when she was diagnosed with an aggressive bone cancer in her spine, Ewing's Sarcoma. She is now 6 years old and still battling hard, while trying to enjoy the world as a little girl. Childhood bone cancers have some of the lowest rates of survival, especially when present in the spine."  That quote is from her mother's facebook page.  I promise if you spend a little time there, you will never forget her or her family.  
Lilee-Jean's mom has started a new blog called The Chelsea Diaries.  It describes a life forever changed after losing a child and one might think that would make it unbearably depressing, but rather, one begins to see in Chelsea's strength, honesty and humour a part of the source of these same qualities in Lilee-Jean. The blog is a powerful read for anyone, but resonates with particular meaning for those struggling to get along in a world both cruel and beautiful by turnsThe most recent post allows us to see and feel inside her head.  It's raw and it's ugly, and it is heartbreakingly beautiful.  Even as she says: "I am sorry you won't respond to this and tell me I’m inspiring because there is nothing inspiring about this.."and continues with: "..my positivity tank is empty, my well of sunshine and rainbows is dry, my dancing in the rain legs are tired and my mama-without-a-child’s heart is broken.." words follow close behind that attest to her determination to carry on: "But then… like I always do, I’ll spend hours, days, weeks, and I will gather up those pieces and haphazardly stick them back together until I’ve assembled something that resembles a heart. I’ll fill up that tank, I’ll dig a new well, and I’ll shake out those legs. Because she’d want me to."  
Lilee's dad continues to sing; you can hear him perform quite a few songs, including one of my favorites, "Hallelujah" at this linkHe does a great version of a Bare Naked Ladies song called "One Week" with Big Shiny, his new band and he has also recently started his own blog, one that is already rich with musical as well as psychological insight.  The picture above of Lilee with Chelsea, and the one below of her with Andrew, were taken during a "Christmas in August" celebration.  Everyone wanted to make as many happy memories for Lily and her family as they could, and they knew at this point that she would be unlikely to live until December.  In fact, she died just a couple of weeks after these photos.  
The pain is still acute, but two years after Lilee's death, her loved ones are slowly finding a way to live without her physical presence though they are never far from her spiritual one.  

During the time Lilee-Jean was here, she smiled and giggled and danced and laughed and lived more than many of us do in a full lifespan.  Her hometown hockey team even trucked in snow for that Christmas in August celebration.  If that isn't dancing in the rain, I don't know what is! 



In the video below, filmed about five months before she died, Brooke explains the difference between a "living list" and a bucket list" as she describes her life philosophy.  It was a revelation to me when she said, "Why not me?  I mean, I'm strong enough.  I can take it.." ..those words in answer to the "Why me?" question most of us ask when hit with a horrible crisis. Where could that maturity and generosity of spirit have come from?  The three and a half minutes it took to watch that video passed by so quickly, but I believe their influence will carry on throughout my lifetime and beyond.

There's Bill reading the program as we arrive at Brooke's Celebration of Life.  Mary (Lilee's grandma) is at the right, recording a favourite Brooke story to place in the Memory Jar.  
We took the Sky Train to Surrey where Mary picked us up and drove us to Langley for the service.  That Mary took time out of her busy life to make sure we could attend the celebration really touched me.  I snapped a few photos as we drove.  Brooke's favourite colours were orange and yellow. She was also a huge Canucks (NHL) fan and her mother also realized as she looked through photos of her that she loved plaids. The orangey/yellow Pattullo Bridge between Surrey and Langley called out Brooke's name for sure.
I had never seen the BC Lions football team's club house before, and sure enough, its colours were also calling out Brooke's name.  One speaker at Brooke's celebration of life was a young man whose words will stay in my memory forever.  He was a longtime friend of Brooke's and had recently gone to a BC Lions game with her.  While his focus had been on the game, hers had been on the players, and let's just say it wasn't their athletic skills that had her most entranced :) What I loved most was that she voiced her fascination (and glee) to him, fully embracing a moment of great fun with a true friend. When he quoted her at the service, everyone's tears turned to laughter, even those of her parents. I knew Brooke would have loved and celebrated her friend at that moment.
One speaker at the celebration spoke of his new job as a principal of a high school.  I'm not sure if he had been one of Brooke's teachers or whether he was perhaps a family friend, but, like many others, he recognized that her example could change lives.  His goal as a new principal was to somehow "Brookify" his school.  Talk about a far reaching impact!  The kids at that school would "slow down enough to consider what's true and real, and always try to understand how other people feel.  And be less quick to anger and show appreciation more.."  Imagine growing up with those attitudes and passing them on!  That "Brookify" thought stuck close that evening as we made our way home and the Sky Train malfunctioned.  The 45-minute trip became more like 3 hours, and we became quite worried for our little dog waiting at home, not to mention that we felt quite lost in Vancouver's transit system.  What saved me, I believe, is that I kept asking myself, "How would Brooke have handled this?"  I realized quickly that she would have made a couple of friends along the way and she would have found a way to laugh.  We talked to at least three people that evening who did their best to help us, and we laughed more than a few times.  Thank you, dear Brooke!
Brooke started a blog in 2013, two years after being diagnosed.  This is her first post dated October 4th, 2013. Her last post was published on July 6th, 2015.  She kept the blog up for two and a half years, writing a total of 27 posts.  Not all that many, really, until you consider the wealth of understanding wrapped up in her eloquent words.  I love the photograph below, displayed at her celebration of life.  What you don't realize in admiring the wonderful smile on Brooke's face was that her hair had begun to fall out on the very day of her high school graduation.  She describes in this post how 6:8 Photography's Kevan Wilkie and Duane Clemens managed to get a photoshoot together while she still had some hair left.  They rounded up make-up artists and hair-stylists, and in her own words, by the time the shoot was complete, she "had never felt so pretty in [her] entire life."  Pretty is the understatement of the year.  Brooke was a beauty, inside and out!
The legacy of these kids is such a powerful one, I can't see a beautiful sky without also recognizing how quickly and how far their messages have traveled.     

At Brooke's celebration of life, Canucks jerseys, plaids, oranges and yellows were everywhere, and ever since that day, it seems that wherever I go,  

oranges and yellows call to me.
In looking back through photos to find the one of the orange hat, I also came across other memories of that day as we wandered about town waiting for the fire alarm testing to end.  We walked by several art galleries on Granville Street that we had never really noticed before.  I took these photos through the window of Kurbatoff Gallery .  This painting by Gerda Marschall, so full of color and enthusiasm for life, brings Brooke and Lily and Seanny and childhood to mind.
The day these oranges appeared along False Creek, I was quite sure we had never, ever seen oranges growing there before.  Perhaps, they were just waiting for my eyes to wake up and see what had been there all along.  
The day Brooke died, Bill and I had met up with a former student from my high school teaching days.  Her name is Lan and though I hadn't seen her in seven years, it felt as though it had been just yesterday since she graduated and began to travel the world to further her education.  She still had the kindest of hearts and she still saw and appreciated the smallest of pleasures that many would miss.
The performance was by a group called A Simple Space, Gravity and Other Myths.
We had amazing seats right on stage, so that the performers actually made eye contact with us.  Apart from the unbelievable talent of these athletes, there was that special "magic" ..
that comes when people genuinely care about the people around them.
This young girl must have felt so cherished as she landed safely in the arms of her trusted fellow performers.  I saw love in all three faces and find comfort in imagining kids gone too soon, cradled similarly, as they passed from one world to the next by the deep love of their parents and other family members.  
Their dashes weren't even close to what I would have wished for them, but they lived them to the maximum.  Their inner light glowed as brightly as this flower.  If I can live just the tiniest portion of my dash with such impact, I will consider my life one well lived.  Thank you ever so much for stopping by, especially after all this time, to allow me to share my thoughts.

16 comments:

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    1. I'm not quite sure how you define "touchy" but am happy to hear from you.

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  2. So eloquent, poignant, and moving. I am sure all who read this post will feel the life force that made these "children" so wise. Thanks for the struggle of how to express that which is inexplicable. The pictures echo the theme so tenderly. Hugs and keep dancing in the rain. Phyllis

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    1. Thank you so much for these words, Phyllis. They mean the world! Hugs to you as well. The next time we get together, we'll have to do a group dance, whatever the weather.

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  3. What a wonderful post, and such heroic kids! You can't set aside the tragedy of losing a child, but you can 'live the dash'! I like that. I've been struggling to write something since William died 6 months ago, and it just never seems right. Maybe i'll just accept that abd out it out there anyway! I certainly find that a large part of my teaction is 'learning to dance in the rain'!

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    1. So good to hear from you! Your words mean a lot. I think of William very often, and always as someone who "lived his dash" with every ounce of his being. My advice to you is to write what you feel, give it a day, go back, edit a bit (although you may not even need to do that) and then post. (Now if only I could learn to take my own advice!). Along with your wonderful photography and shared knowledge, I have always admired the honesty in your posts. I've read every word you wrote about William (except during this latest drop-out period of mine) and feel honoured when you share him with us.

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  4. Hello Carol, I have been wondering where you have been. What a touching post and a lovely tribute to these wonderful children. I can not imagine loosing a child. I wish there was a cure for this horrible disease called cancer. I think I need to learn to dance in the rain too. Have a happy weekend!

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    1. Thank you so much, Eileen. You are the proverbial "dancer in the rain" and someone who "lives the dash" for sure! I have thought of you every single Wednesday and Saturday, but I seem to be an all or nothing personality. Hoping to stop by your blog today to catch up on what I know will be amazing sightings and add a few critters we've seen over the past weeks as well.

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  5. The hat looks good on you, Carol, and I like the light filtering through the flower. There are many lessons to be learned in your thoughtful post. It’s a paradoxical existence when people/children must fight to continue living while others destroy themselves and sometimes others … blind to the gift of life in the here and now!

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    1. Thank you, Maria! Paradoxical indeed, and so very sad. I visited your blog yesterday and was blown away by the sandpiper post and also by the one about the seals. Ran out of time to write a comment that adequately expressed my appreciation, but will be back!

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    1. And always so happy to hear from you, lovely lady!

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  7. Wonderful to read you again and view your images. The hat looks great on you.

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    1. Thank you Stephanie! So kind of you. Hope to stop by your blog today!!

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  8. Awesome post! What lovely young ladies they were... the pain of loss is the flip side of loving.

    Thanks for your comment on my post and keep on dancing!

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  9. Wow! This post gave me shivers, Carol! It was so powerful and poignant. I can't imagine the anguish and bravery of the parents who lose their children. That photo of Andrew in his Santa cap and Lilee is the epitome of parental love and courage. As for the children themselves, their spirits cut through all the sadness and they show us how to dance in the rain and live in the dash however short that dash is. I love the photos of you and Bill and BJ dancing in the rain. It's easy to forget sometimes how truly fortunate we are and how much harder so many people have it. You are a bright light in this world, Carol, because of your big heart and generous spirit. Thank you for sending the ripples of these brief but shining lives further out into the world. Hugs my friend!

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