Eighteen

When Kolbjorn was born, the first thing I really noticed was his face. Before the chord was cut, before he was passed to me to hold, seconds after his first breath, I saw his blond hair, and then his face. One of my first thoughts was how masculine this beautiful, blond baby looked. I knew he was a boy just by looking at his face. To me, he had such distinctive features; all babies look so similar - but he didn't look like just another baby. He looked so grown up. I remember thinking that I needed to memorize what he looked like. I thought that if he still looked that good as a teenager, he'd have to fight off the girls. I wanted to remember what he looked like then so I could compare it to what he looked like as a teenager. I wanted to preserve those moments, seconds after birth, when he first looked up at me. Even then he had such an insightful, penetrating gaze, it felt like he could see all my secrets as he looked at me. 

I never got to see what he looked like as a teenager. I have nothing to compare those memories to. The glimpse of his future that I had in those few seconds are all that I have. Those few moments were a taste of what I've missed, and a bit of insight to the young man Kol might have been today.  They were a gift.

Eight years.

Mari posted this to Facebook and Instagram tonight, and with her permission we're sharing it here:

It’s now been eight years without my brother. The grief feels both very old and shockingly new. It is as much a part of my day as brushing my teeth or cooking a meal: constant but also constantly renewed. 

I am now fairly comfortable within my loss and my identity of “girl whose brother died.” I know my answer to “How many siblings do you have?” There are days where thinking about him bring back no different feelings than other memories.

Then there are some days still where I am crushed. Crushed by his absence, by the loneliness, by my lost childhood, by the sudden obliteration of his. Days where I can’t breathe or think or sleep or cry because of the emptiness, the injustice that is childhood illness.

It’s important to talk about him. It’s important to talk about loss and grief. I heard someone say about grieving that “it doesn’t necessarily get easier, but it can get lighter.” My hope for you all is that life gets lighter.

I love you Kol. It’s been far too long.

Numbers

I'm trying to wrap my head around some contradictory numbers.

Today we celebrated Kol's 17th birthday, and today Kol is still 9 years 7 months and 24 days old, the same age he's been for the past 7 years 4 months and 6 days.

In a little less than two weeks, Kol's baby sister, who is 7 years 4 months and 16 days younger than him, will turn 9 years 7 months and 25 days old, and become older than her big brother.

In a little less than 2 and a half years, Kol will have been dead longer than he was alive.

And someday, Kol will probably have a niece or nephew who is older than him. And possibly more than one. Hopefully more than one. (No pressure, girls).

Happy birthday Kol. You should be 17 today, but you're forever 9 and two thirds. We're thankful for each and every one of the 3524 days we had with you, but we wish we were at 6209 days and many, many more yet to come. We love you and we miss you every day, but today we're missing you even more than usual.

When will it suck less?

"They" say that the first year after a death is the hardest for those left behind. "They" are wrong. Kolbjorn died 7 years ago. These last 7 years have been hard. All of them.

After a funeral, or even sometimes during a funeral, we hear that the "firsts" will be hard. The first birthday. The first Christmas. The first anniversary of the loved one's death. Then it will be easier. I believed this, too. Until my son died. I read in a book about grief that the grief a parent feels at the loss of a child is the most intense grief anyone has to suffer. I don't know if I agree with that - everyone experiences grief differently - but I do know that it is the most intense grief I've ever experienced. I was blindsided by the intensity of the grief I felt, and continue to experience, and how all-encompassing, life changing Kolbjorn's death has been. The hole in my chest, the heaviness in my heart has not changed since the moment I accepted that Kol would not be taking another breath. The only difference now is that it has become a part of who I am, and I am forced to learn, second by second, how to incorporate that into my daily life. The more time that passes, the more I learn how to do that. I've learned how to smile, swallow, and be silent when I'm too choked up to speak. I've learned to look past the awkward, sometimes thoughtless, sometimes even rude comments, to the intent behind those words, and appreciate that they were probably meant to comfort. I've become a much quieter, and, I think, a more private person.

The first year after Kolbjorn died was hard. We had to deal with the shock of his death; in spite of 2 years of cancer treatment, I truly did not believe Kol would die. We spent that first year learning just what it was like not having Kol with us, and learning how to be a family without him. The second year was harder than the first. The shock had worn off, and we began to realize the execrable reality that Kol would never be a part of our future. If you talk to other bereaved parents, some will say that the 3rd year gets better. Most parents that I've spoken to will say that at the very least, the 3rd year is just as hard as the 2nd. I'd say it was harder for me. My emotional reserves were non-existent. Grief is so incredibly exhausting.

Year 4. I'd like to say it was better. I know I tried to tell myself then that it was getting easier, but it wasn't. I dreaded each special occasion. Obviously, Kol's birthday was tough, but so were his sisters' birthdays, Christmas, Easter. Mothers' Day. The anniversaries were even harder. Kol's day (the day he died), May 21. The day of the brain surgery, May 29. The day we learned the lesion was not just a benign tumour, but an aggressive sPNET, June 7. Fathers' Day.

The 5th Christmas was finally easier. It was a relief. Finally. I thought the grief wouldn't be so all-encompassing from now on. Then came Kol's day - the 5th anniversary of his death. It was the hardest day up to that point. Five years seemed like such a big milestone - a long time, and yet it still felt like only days since Kol had died. It started days before May 21st, 2017. I was emotional. Not sad, but easily triggered, on edge, remembering. Since that day, some days have been hard, some easier. Like a roller coaster. Still. And that's normal.

Please notice that I'm talking about grief. Grief is not sadness. It is not depression. It's not even bereavement. These words are not interchangeable. I've had people tell me that Kol wouldn't want me to be sad. I'm not sure what they mean when they say this. I can't avoid feeling sad. I will feel sad at times. But the sadness is temporary. I was sad that Kol wasn't at his sisters' graduations. I'll feel sad that Kol won't be at weddings, that he won't be on the stage with his grad class. I'm sad that Annika doesn't have many memories of her brother. I wonder, however, if those who've told me not to be sad meant that I shouldn't still grieve. And that's impossible. Because I can't change the fact that Kol died, and that there is a hole in my life as a result. Maybe they mean I should be glad that Kol is in heaven, in a much better place, so I should be glad for him. I am. I don't actually worry about what Kol is doing. I've always instinctively felt that he's fine. I'm selfish. I grieve for me, and my girls, and Kol's friends, and all of those whose lives Kol might have impacted had he lived. Maybe they mean that I shouldn't let grief affect my day to day living. Except that grief is now part of me. I can't escape it.

I can embrace the life that I do have. I think we as a family do embrace life more than we ever did before Kol died. We cherish what we have, and our priorities have changed. We laugh lots. We experience joy - not just happiness. We do things together as a family - things we choose to do, that we want to do, not just things that we feel we should do. We make a conscious effort to do those things that are most important to us. I like the strength and character, and depth, and insight that I see in the girls, and I know that Kol's death has caused them to grow, and shaped them into the amazing people that they are. I'm thankful for that - and so incredibly proud of them. They like who they are, and the lessons that they've learned through Kol's death. We all fully acknowledge that we are who we are because of Kol's death, and most of the changes are good! But that still doesn't mean that our grief from losing Kol is ever going to go away, and I'm selfish enough to wish that he were still alive - experiencing life with us.

I know that that hole and the heaviness in my heart will always be there. I don't know if it will change. Probably. Sometime. Sometimes I notice the feelings of grief more than I do at other times, and sometimes I'll express those feelings, or allow them to show, but they're always there. I just read an article about Keanu Reeves, talking about grief. He said “...it’s about the love of the person you’re grieving for, and any time you can keep company with that fire, it is warm. I absolutely relate to that, and I don’t think you ever work through it. Grief and loss, those are things that don’t ever go away. They stay with you.” We grieve for the loss of the life that Kol will never have, for the future we expected to have that will not happen, for the experiences that we miss out on because Kol's not here to influence them.

Today is harder again. I'm still exhausted by the grief. We're sick and tired of missing Kol, of wishing he were here, of wondering what he'd be doing, who his friends would be. He should be here. This is my struggle. Our family's struggle. Our community's struggle. I choose to accept the pain, the warmth. The grief won't ever go away. We know we're not grieving alone, that most people who read this also miss him dearly. It makes me happy to know our family is not alone in our grief - that so many others care and remember Kol enough to think of him, and to grieve with us. We thank you all for your support, for the poem, for your letters, texts, kind words, emails. The grief is part of who we've become, and we're stronger people because of it. We appreciate the highs more because we understand the lows. I just wish sometimes it wasn't quite so hard.

Six years

Today marks 6 years since Kol died. It seems somewhat more momentous this year, as this is the first time that this anniversary has fallen on a Monday again (May 21st 2012 was a Monday). We spent time out at the grave, cleaned up his headstone, switched out the old LEGO minifigs for new ones (First Order Specialists Battle Pack and an assortment of Series 18 minifigs, if you’re keeping track), had a picnic lunch, wrote messages on helium balloons and released them… much the same as other years, both on the anniversary of his death and on his birthday. And now I'm in an odd mood.

I’m starting to feel conflicted about these commemorations. On the one hand, it feels like we’ve created new traditions for our family, something that we can count on happening, something to look forward to. Its a great chance to connect, or reconnect with the girls, and to reminisce about Kol. The girls also look forward to it, and set the time apart to be just family. On the other hand, it starts to feel like a cliché, and some of my thoughts feel repetitive as well - “hard to believe it’s already been X years, but hard to believe it’s only been X years” is something I’ve found myself saying over the last few years. Actually, I just checked, and in a blog post just after Kol started radiation therapy in the summer of 2010, I said “six weeks feels like an instant, six weeks feels like an eternity”, so obviously I’ve been saying that sort of thing longer than I realized. Cliché or not, it still describes how we feel.

Other thoughts that keeps coming to mind are the “what would Kol be like today” and “would Kol have liked this or that” questions, and I find it harder to answer those questions the further we get from his death. We can look at what his sisters are like, and the things that they like now, and try to guess the answers to those questions, but as time goes on the answers seem more and more uncertain. Would he like the new Star Wars movies? Probably… maybe? I like them, and his sisters do too, but that’s no guarantee. Maybe he’d be feeling the need to rebel against his family, or to reinvent himself… or maybe he wouldn’t be that much different from the Kol we knew. Kol kept surprising us with his opinions and preferences - we certainly wouldn't have predicted that lime green would be his favourite colour, or that he would like public speaking, so what surprises would he have had in store for us in the last 6 years?

I do know that Kol loved Star Wars, and he loved music. We put together a mix CD for Kol to listen to while he received radiation therapy.  “The Imperial March” was one of his favourites. There have been some great rock/electronic covers of Star Wars themes over the past few years that I think he would have enjoyed, so I’m going to put a few of them up here. He never got to hear them, but you can take a listen for him if you’d like - just remember to crank up the volume.

Celldweller's electronic/dubstep cover of "The Imperial March" would've appealed to him, I think - he liked electronic dance music:

The "Force Theme" maybe wasn't one of his favourite Star Wars themes, but I think he would've appreciated this electronic remake of it:

And I'm pretty sure he would've enjoyed this rock cover, especially with Boba Fett drumming (he loved playing drums):

And this one isn’t really a cover of Star Wars music, but I think he would’ve laughed his butt off at it just as much as his sisters do:


Thanks as always to our family, friends, church and community, and loved ones everywhere for your love and support over the years, and for bearing with our odd moods. The pain of Kol's death doesn't hurt less as time goes on, but I think we're getting better at learning how to live with it.

Six years feels like an instant. Six years feels like an eternity. Love you Kol, we miss you.

Happy would-be birthday

Today would be Kol's 15th birthday. He would probably be at LCBI this month. He would be old enough for a learner's license, and I would be waiting for him to soon add his own dent or scrape to our battle-scarred van. I would be wondering when I would stumble across something questionable in his web browsing history and have a slightly uncomfortable chat with him about it. I would be starting to ask him those "so, what do you think you'll do after high school" questions that kids start getting around his age. I would be watching him with his friends, goofing around and joking, probably playing video games together. I would be watching him with girls, wondering who he likes and who likes him, but trying not to get too nosy or obvious about it. We would probably be talking about music, movies, stuff on Netflix, books, comics, phones and apps.

I wonder what would be different about him. Would he still be into Nintendo, or would he think that it's too childish and be into Xbox instead? Would he still be a voracious reader? Would he be into something unusual (well, unusual for our family) like playing sports, woodworking, auto mechanics? Would he still be playing piano? Would he still be singing? Would he have been in the Anne of Green Gables production earlier this year? Would he be fighting with his sisters? (His sisters laughed and said “probably!”) Would he be into Snapchat, Twitter, Facebook? Would he be playing drums? Would he have gone to the Saskatoon Fan Expo a couple weekends ago? Would he be interested in computer programming at all? Would he be begging us to get the new Millennium Falcon LEGO set (even though it costs as much as a cheap used car) or would he be "too old" for LEGO or Star Wars? Would he have been as interested as his sisters were in "Frankie K", the salamander we found in the front yard tonight?

Would he be waiting for or have already had cataract surgery (one of the so-called “late effects” from radiation treatments)? Would he be on hormone therapy to compensate for the radiation damage to his thyroid and pituitary? How tall (or short) would he be after the radiation damage to his spinal column? Would we be watching for other late effects from chemo and radiation? Would we be waiting anxiously for the results of his latest MRI? Would he be back in treatment for a recurrence or a secondary cancer, or would all these possibilities just be the “background noise” of our lives like it was six years ago?

Today I've been feeling the weight of all those "would be" moments and questions, but at the same time today I've also enjoyed spending time together with Kristen and the girls to celebrate and remember him. As much as the loss still hurts, memories of him and the love of our family still brings a smile to my face, even through the tears.

Happy 15th birthday, Kol. We all miss you, and we love you.

Sneak Preview!

First of all, thank-you to everyone who has sent me their stories and pictures of Kol for the book. If you don't know what I'm talking about, check out my last post below, called 'Stories'. I'm working as hard as I can (when I'm not busy with school) to write. I'm still looking for more stories, so if you haven't already, please send them to me at julianna@friggstad.com. I've set a deadline of February 28, so that I have enough time to incorporate them and have the book printed before the anniversary in May. As well, if you know anyone who might have stories but may not have seen this post, please tell them!

I've included the first chapter of the book below for you to preview. In it, I talk about why I'm chose to write this book. I hope you enjoy it!

Chapter 1

Behind the Image

They say picture is worth a thousand words. The story behind it, the emotions felt by both the subject and the photographer, all captured in a still image of that single moment. Sometimes, the story is hard to read. Other times, it’s painfully obvious. Still other times, the story is told through several different images, all put together.

The last kind of the story is the one told by my grandparent’s stairwell. In 1972, shortly after the birth of their first child, my grandparents moved into a three storey house in Saskatoon, overlooking the South Saskatchewan river. The year after, they started taking annual family portraits, a tradition that our family still donors to this day. These portraits now line the walls of the staircase, beginning on the main floor and going all the way up to the attic. There are photos there of my grandparents at the high school where they met, from the year they were engaged, from their wedding. The story continues with the addition of three more children, and of them growing up. There are four more wedding photos, one of each child. The photos document the growth of the family as the grandchildren are born, until finally, in the 2010 photo, there are 21 of us all smiling for the camera.

But the photos also show hints of sadness, such as the one taken with the whole family dressed in black and holding roses, taken a few hours after my great-grandfather’s funeral. Another photo shows everyone gathered around the headstone of the grandchild who died shortly after birth. Or the series of photos from 2009 to 2012.

In the 2009 photo, my little brother is smiling big, his almost-white blond hair shining in the sun. The next year, the hair is gone and replaced with a black toque, with the words ‘Little Bald Angels’ (although the words are hidden in that picture). The hat is gone in the next picture, and his hair is back, darker this time. Then, in 2012, my brother is gone.

Other photos of him stick out in my mind. In one, he’s about 4 years old, and his face is covered in chocolate ice cream. That one was taken by my grandpa on a trip to the ice cream shop a few minutes away from their summer cabin. In another, he’s fast asleep facedown in a pile of picture books. My mom took that one after finding him on the floor in our family room, where he had been reading. He was younger than five. A picture taken on a trip to California when he was nine, standing in the ocean, clothes soaked, staring at the horizon. One with his smooth bald head and his leather aviator jacket, a LEGO model of a Star Wars ship on the table in front of him. That was taken by a professional photographer during a family session when he was eight. A closeup of his head, resting on his crossed arms, his bulky beige winter jacket surrounding him, his face lit up with a giant smile. Taken by a reporter to go with an article in our local newspaper.

Those photos mean all the more to me now. They are like windows into the past, retelling the story of my brother’s life, and my life with him. Each one reminds me of his unending energy, his wild-eyed excitement, his intense love for books and LEGO, his stubborn perseverance when it came to seemingly impossible video game levels. I remember how he laughed, either sounding like a machine gun or like Woody Woodpecker. I remember how passionately he would tell his stories to anyone who would listen. I remember how his smile would light up the room.

But the story isn’t always happy. The photographs also tell about the hospital stays, the long hours in treatment, the adverse side effects. The loss of his hair, his damaged immune system, the chemo-induced nausea. The weekly ritual of changing the dressing around the PICC line in his arm, the nightly ritual of flushing that line with saline and heparin. The sulphuric smell of the drugs he was on. The month that he spent in his room, to weak and tired to get out of bed.

The night he died.

But as much as pictures tell a story, they often need help. They need a voice to speak the words. And that’s what I want to do. I want to tell the story of my little brother, the battle that he bravely fought, and the people whose lives he touched.

       I want to tell the story behind the image.

Stories

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, julianna@friggstad.com. 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!

Julianna

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.

Legacy

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.