Sunday, November 27, 2016


I love to write.

In a way, I have Kol to thank for that. I started writing so that I’d have something to do during the day while I was sitting around at the hospital, or the cancer center, or at my Grandparents. I created new worlds and characters to go with them, and fantastic stories about their adventures (stories that will probably never be read by the general public). Writing became an outlet for me, a way for me to escape from the reality I was facing.

I haven’t written as much the last few years. Part of it was that I started school and found my time filled with homework and other assignments. Part of it was that I had trouble finding the inspiration I needed.

Lately, I’ve been wanting to start writing again. It was hard to get back to it, but once I started, I knew it was what I needed to do. I also knew what I needed to write about: Kol. I’ve been wanting to write his story for awhile now, but I wasn’t sure I could do it. But now, I feel confident that this is something I can do. I’ve also set myself a deadline: May 2017, five years since he died.

While the book will talk about the years Kol was sick, and his journey through the treatments, I also want it to talk about Kol apart from the cancer. I want it to talk about the little boy who couldn’t put a book down. I want it to talk about the boy whose Star Wars knowledge rivaled my dad’s. I want it to talk about the boy who was obsessed with LEGO. Most importantly, I want it to be about the boy who affected so many people’s lives.

And that’s where I need your help. I want to include your stories. I know that so many of you have a favorite memory, or two, or three, or more, that you can share. Some of you may also have pictures. So I want you to send them to me. Send me your stories and your photos. I will collect them and include them in this book. Your stories could be just a couple sentences or a full page. They could be from before his diagnosis or from when he was sick. They could even be about some way you saw him affecting your life or others’ lives after he died. They can be funny, happy, or inspirational.

Please send your stories and pictures to my email, Be sure to include your name, so that I can properly give you the credit for your contribution to the story (if you wish to remain anonymous in the book, just let me know). If you send a photo, try to include the date when it was taken (if you know).

I also know that many of you will want to read this book when it is finished. While I haven’t been able to figure out the details, I will try my very best to make sure that the book is available to the public, and will put the relevant information on the blog when I have it.

Thank-you in advance for your help, and happy writing!


Thursday, October 27, 2016

Triggers and safe places

From Julianna (originally posted to Facebook, reposted here with her permission):

Okay, so I've had something on my mind for awhile, and I need to say something about it.

I've seen a lot of people talking about trigger warnings and safe spaces lately. People seem to think of those things as contributing to a generation of young people who feel entitled and self-important. They are portrayed as enabling people to live in a bubble, away from anything they personally deem offensive or too controversial.

Most of you know my story. I was twelve when my little brother was diagnosed with brain cancer. For two years, I watched him suffer through debilitating headaches, sickness from the drugs, needles, hair loss, and other side-effects. During this time, I also had to adjust to a new role of responsibility in my family, so that my parents could focus on taking care of him as much as possible. When I was fourteen, I listened as my parents explained that my bother had less than a week left to live. That night, I sat beside him and heard him take his last breath.

It was about a year later that the anxiety started. Little things would make me feel sick to my stomach, and would keep me up at night. My first panic attack came after watching a movie in the theatre. The loss experienced by the lead character, and the grief they felt, reminded me of my own, and by the time my Dad picked me up from the theatre I was sobbing. It took me hours to finally calm down.

By the time I started Grade 10, I knew what things triggered the panic attacks. I could usually keep them under control. Most of my teachers knew my background, and were really good about making sure I knew what was coming up and letting me have the space I needed.

But not always. We watched a movie in English class. Within the first five minutes of the movie, there was a scene of two children, laying in coffins. The rest of the film dealt with death, and the idea of heaven and hell. I ended up in the bathroom, having a huge panic attack, bigger than any I had had before. 

Do you know what could have prevented a fifteen year old girl from having a panic attack in a high school bathroom? A trigger warning. Just a quick mention to me that the movie dealt with death and loss. I had myself in a place where I would have been able to mentally prepare myself.

I have since gone to a support group to help me learn how to deal with my greif in a healthy way. But I still deal with the anxiety and the panic attacks on a regular basis. My family does their best to give me trigger warnings when they can. Personally, I usually don't need to avoid the trigger, I just need to know it's coming and be prepared for it.

My story is mild. I know that there are others out there who have experienced even more traumatic events than I did, who react to their triggers much stronger and in ways that need more than a little group therapy to even begin to heal, who need to completely avoid their triggers. That's why they need a safe space. They need somewhere where they can feel comfortable, without having to be afraid of triggers. 

Because everyone deserves that, right? Everyone deserves a chance to live without fear.

Saturday, May 21, 2016


Today is 4 years since Kol died. I thought I had some ideas for a blog post - talking about a legacy, the grand piano we bought with Kol's life insurance payout, the headstone that we finally got for him - but I just can't seem to get them together right now.

This seems to happen to me a lot. I'll have something moderately complicated that I want or need to do (like building a web site, getting my taxes done, filling in a census form, cleaning my office), but my mind just can't focus and get it done. It feels like there's this giant whirlpool of grief inside my mind, and I have to work so hard to keep from getting sucked into it that I don't have the energy to deal with anything non-trivial. This isn't every day, mind you, but it can feel like it is, especially when I'm tired.

This scatter-brained-ness, this tiredness, this is not Kol's legacy. This is the aftermath of grief, the wake of disruption that permeates our lives (and will for years to come). As it is with a boat's wake, the first waves are large and loud as they crash on the shore, and the waves continue to come - sometimes just a ripple, but other times almost as large as the first waves. The shoreline is changed by the waves, in some places so much you don't recognize it, and it continues to change as the waves continue.

Kol's legacy is in our memories of him. It's in the pictures we have of our family together. It's in the videos of him. It's in those moments where I see an echo of him in his sisters - in a smile, a laugh, or something they say. It's in the laughter we share when we're talking about the goofy things he did. It's in the tears we share when we talk about how much we all still miss him. It's in the hugs we share after the laughter and the tears.

His legacy is love, and while subtler than grief, the waves of his love and our love for him will also continue to change the shorelines of our lives.

Huh. I guess I did make the legacy thing work after all.


I couldn't find a way to integrate the piano and the headstone into this post, but here they are anyhow:

We bought a Yamaha grand piano with some of the money from Kol's life insurance. We wanted to get something that would be substantial, that would bring us joy, and this piano fills that role very well. I wouldn't say that playing piano was Kol's favourite thing, but he did enjoy it, especially playing duets and trios with me or his sisters.

I've often thought that if it were up to Kol to choose something to spend that money on, he probably would've picked a giant TV screen, with one of every kind of console, and a stack of video games a mile high. As tempting as that would be to me as well, the piano does seem like it would hold it's value (both in terms of money and usability) over the years. :)


We also finally got a headstone for his grave this past year. It's different than pretty much any other headstone we've seen - at the very least, different than anything else in the Outlook cemetery. The base is wider than normal, and there are two rectangular areas (on either side of the "pillow" stone) that are etched out and have Lego plates attached. So, instead of (or in addition to) putting flowers to his grave, we can put Lego there.

Stormtrooper honour guard...

...and a miniature AT-AT lying down. It was the only way to make it stay in place.

We're planning to swap out the Lego there on a regular basis - some purchased specifically for this (like the stormtroopers and the mini AT-AT), and some built from our collection at home. I don't think Kol was much for flowers, but Lego was definitely one of his favourite things - I think he would approve.


Thank you to everyone who was thinking of us and praying for us today, and for all the support you've continued to offer us.