Kolbjorn's Journey

Eighteen

2020-09-27T23:56:00.000-06:00

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.

2020-05-21T23:58:00.000-06:00

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

2019-09-27T23:58:00.001-06:00

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?

2019-05-21T23:53:00.000-06:00

"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

2018-05-21T21:37:00.001-06:00

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

2017-09-27T23:53:00.000-06:00

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!

2017-01-13T14:56:00.001-06:00

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

2016-11-27T19:56:00.002-06:00

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

2016-10-27T21:55:00.001-06:00

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

2016-05-21T23:12:00.001-06:00

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.

Three years

2015-05-21T17:18:00.001-06:00

And here it is, May 21st again, the third anniversary of our hearts being broken and our lives being changed. I'm not sure what to say about today - there's so much emotional baggage, so many memories tied to it. It's the kickoff to a series of anniversaries over the next couple of weeks - 3 years since his funeral, 5 years since that fateful headache that sent us to the ER, since a CT scan found "something", since his surgery and pathology results. It's a day that I can't forget, and as much as it pains me, I don't want to forget it.

Mari recorded some of her memories of Kol, called 21 Things You May Have Forgotten About Kolbjorn, and with her permission, I'm sharing it here:

Kolbjorn had a cough for most of his life

He would often be awake before six am

He would wear the same pair of socks for weeks

He'd wear the same shirt for a week

In the summer, his footwear of choice was dress shoes

He had a dance for everything

He liked clothes shopping

He wanted to go to Denmark

He'd have one toy that never left his side

He was visited by the 501st Legion

Some of the meds he was on made him the worst person to be around

Some of his other meds smelled terrible

He never cut his hair after chemotherapy

When he was little, he said he would marry his cousin

He didn't mind playing Barbies

He would say the full name of books and movies

He'd play video games standing up, right in front of the screen

He'd watch movies over and over until he had them memorized

He wanted to play the oboe or trombone

If he could not find clothes of his own, he would wear his sisters'

He once fit seventeen grapes in his mouth

Today will be a mostly quiet day. I've taken the day off work so I can spend it with my family (and honestly, I don't think I'd be able to do much of anything that requires concentration). We've been playing some Mario Kart and Super Mario Bros games, we'll visit his grave and do a balloon release, we'll likely watch some Star Wars or Clone Wars - these are our new traditions for the 21st, if you can call doing something three years in a row a "tradition".

New traditions. Our "new normal" (I still don't like that term). Life goes on, even when it seems like it can't. Our hearts are broken, but they are healing. And even though our family doesn't feel whole, we are still a family. Thank you for being with us on this journey, for your support, for your prayers, for your encouragement. May God bless you all.

February Numbers

2015-02-15T20:39:00.000-06:00

The beginning of February is a precious time for us. Mari, Julianna, and Annika have birthdays on the 2nd, 8th, and 12th. Kirk's mom and sister also have birthdays within those 10 days. This year, there are some more milestones in February.

3524
Three thousand, five hundred and twenty four days = 9 years, 7 months, and 24 days = 115 months and 24 days, = 503 weeks and 3 days = how long Kolbjorn lived = the age Birgitte was on Annika's 5th birthday.

On February 12, 2015, Annika turned 5 years old.

On February 12, 2015, Birgitte was exactly 3524 days old. The same age that Kol was when he died.

Birgitte is now older than her big brother will ever be.

On the day Annika was born, I noticed that Kol's headaches were more frequent than I thought they should be, and I started looking for patterns, and possible causes.

Annika will be 3524 days old on October 7, 2019, just 12 days after what should have been Kol's 17th birthday.

1826
One thousand, eight hundred and twenty six days = 5 years = 60 months = 260 weeks and 6 days = how long it has been since Birgitte's first Grand Mal seizure

On February 12, 2015, Annika was 1826 days old.

Today, February 15, 2015, is 1826 days since Birgitte's first Grand Mal seizure.

1000
One thousand days = 2 years, 8 months, and 25 days = 32 months and 25 days = 142 weeks and 6 days = the number of days since Kolbjorn died.

Today, February 15, 2015, is 1000 days since Kolbjorn died.

It's interesting to me that so many of these milestones overlap. Maybe it's God's way of making it easier for us. All I know is that the last two weeks, and especially the the last few days, have been full of bittersweet moments, and lots of tears.

I wish I could say that grieving gets easier over time. The second year after Kol died was harder than the first. Everyone talks about how the first Christmas, the first birthday, the first anniversary of a person's death (some say "angelversary", or "angel day") are hard. They are, but for me, the second year was much harder than the first, and the 3rd year has been even tougher emotionally.

I think the 2nd year was harder because the shock had worn off, and I dealt with the reality that my son was dead, and would never be around to celebrate any more special days with us. Now, in the 3rd year, I see our other kids continuing to grow, developing new abilities and accomplishing more, and I don't know what Kol would be doing or what he would be interested in as a 12-year-old. It's hard sometimes, to see other 12-year-olds; how accomplished, tall and mature they are becoming as they begin to look like teenagers, instead of little kids. We feel his absence so very strongly on on special occasions, and even on plain, boring days. Family dynamics are so different than they were with Kolbjorn around. We feel so strongly what Kol is missing out on, and by extension, the myriad of possible experiences WE are missing out on, because Kol's not there to add his unique touch. I know Kol isn't having headaches any longer, that he's not in pain, that he's probably happier than I could imagine, but I guess I'm selfish. This hole inside me will never go away. The grief will never go away. Some days, I can't wait to see him again.

Two years

2014-05-21T23:36:00.000-06:00

It's May 21st again. Two years since Kol died. Almost four years since we took Kol to the ER. And like last year, we spent the day together as a family (except for a couple piano lessons that we couldn't reschedule). We watched Star Wars while eating Kraft Dinner and wieners for lunch. We went out to his grave, wrote messages to him on helium balloons (green of course - not his favourite lime green, but as close as we could find in town), and had a picnic supper. We watched more Star Wars after we came back home. And we cried.

I think in many ways, the second year has been harder than the first year, and many of our friends at Compassionate Friends say the same thing. And life is still changing for us. We're still getting used to being a family of six, not seven. We're still all dealing with emotional aftermath. But some days, it almost feels like things are getting better. Not a lot better, and not quickly, but a little bit now and then.

Julianna posted something to Facebook late last night (or early this morning, depending on how you look at it), and with her permission, I'll share it here with you:

Today
For most people, today is just like any other day.
Wake up, shower, eat breakfast, go to work or school,
Come home, eat supper, go to bed.
To most people, it's just a Wednesday.
Middle of the week.
Nothing too special.
The month, May, doesn't matter too much, aside from implications of warm weather.
The date, the 21st, isn't much of a concern either,
Aside from its reminder that June is nearly here.
To almost everyone, it's just another day.
But not to me.
To me, it is Wednesday, May 21st.
To me, it is sadness and pain.
To me, it is grief and loss.
To me, it is memories and tears.
To me, it is an anniversary.
The two year anniversary of the end,
The end of hospitals and doctors,
The end of needles and tubes,
The end of nurses and drugs,
The end of sickness and suffering.
The end of life.
But it wasn't the end.
Not for me.
For me, it was a beginning.
The beginning if grief and sorrow.
The beginning of questions without answers.
The beginning of unstable emotions and bursts of tears.
The beginning of painful memories and inability to cope.
The beginning of a new life, but a life that feels wrong.
A life without you.
A life without your smile.
A life without your laugh.
A life without your jokes that made no sense, but still made me chuckle.
A life without your hugs.
A life without your competition in Star Wars trivia.
A life without seeing how proud you are because you beat a level on your video game.
A life without the sight of you on the couch with your nose in a book.
A life without your excitement over your new LEGO creation.
A life without lightsaber fights in the backyard.
A life without seeing your love, shining through your eyes and spreading over your whole face.
A life without my brother.
And I don't know how I made it this far
Without you.
I love you.
I love you so much.
I always have.
I always will.
Keep On Loving.
Kolbjorn Lloyd Obert Friggstad Sept 27, 2002-May 21, 2012

Thank you all for being with Kol and with us through this journey. It's been a long while since we last posted here, and I don't know how long it'll be until our next post, but thank you for being here, for reading this post, for remembering Kol, and for keeping our family in your thoughts and prayers. May God bless you all.

Happy Birthday, Kol

2013-09-27T10:15:00.001-06:00

My dear son:

Today should have been your 11th birthday. It's the second time we've had to celebrate your birthday without you around. Last year, your sisters helped organize a big party at the church with lots of friends and family, but this year, we're keeping it simple. We'll just be at home, eating some of your favourite foods (at least as well as we can remember, since it's probably been three years since you had much choice over your diet), and doing some of your favourite things (like watching Star Wars, playing Wii games, and reading together). We'll probably cry, but we'll also probably laugh and enjoy our memories of our time with you.

We keep asking ourselves how you would be different now. Would you still like the same things? Would you still be a voracious reader? Would you still be building LEGO contraptions? What games for the Wii would you have begged us to get? Would you have loved the Hobbit movie as much as your sisters have? What new things would you be into that we couldn't guess at now?

We love you, and we miss you terribly. We talk about you every day, and you're always in our thoughts. Happy birthday.

With all our love,
Mom and Dad, Julianna, Mari, Birgitte, and Annika

"Poor kid"

2013-09-02T01:21:00.001-06:00

Kristen was just telling me about another kid we know of fighting an SPNET, about all the surgeries and treatments he has been through, and all the complications arising from them, and the only thing I could say was "Poor kid."

I meant it sympathetically, not sarcastically, but I found myself recoiling at the shallowness of my response. I know something of the hell that this kid and his family have been through - the uncertain future, the painful present, the longing for the trouble-free past. This - "poor kid" - is the best I can give them? They deserve more than that.

But then I realized that I don't have more than that to give right now. That if I let myself feel more than that for him and his family, it'll bring all my grief crashing down on top of me, burying me, destroying me. That saying "poor kid" isn't a sign of callousness or lack of sympathy, but a survival mechanism.

There are too many "poor kids" out there that we have met or become aware over the past three years. There are too many families simply trying to survive the journey of a sick child. The oceans are not enough to contain all the tears that should be shed on their behalf. All I can offer to them now is "poor kid", and a promise to myself that someday, when I no longer need all my tears for myself, to shed some for them.

To the parents we never met of the children we never knew

2013-07-01T15:45:00.000-06:00

There are so many of you. We found your blog online, or someone sent us a link to your CaringBridge page, maybe you found our blog and sent us an email, maybe our kids met your kids at Camp Circle of Friends. Your child was sick, likely with cancer, especially a brain tumour or something similar. We've never met in person, but possibly we've talked on the phone or maybe exchanged emails. We've been part of the unwilling fellowship of "parents of sick kids."

And now your own dear child has died. Maybe it was a short journey, only weeks or months since their diagnosis, or maybe it was years. But now they're gone, and we don't know what to say.

We wish we could tell you that we understand how you feel right now, but we can't honestly say that. Each person is different, each family is different, each circumstance is different. The pain and grief that you go through isn't the same as what we have gone through. To say "we know how you feel" seems naive at best, and trite or cliche at worst.

So what can we say? Only that we feel sorrow at your loss and the pain you are feeling now, and we hope and pray that you and your family are able to find solace and healing over the coming months and years.

P.S. One thing that has been helpful for us this past year has been the Compassionate Friends support group of parents who have lost children. It's been helpful to share the story of our loss and our grief, to hear other parents' stories in return, and to celebrate the lives of our lost children.

Spring Sprint 2013

2013-05-31T15:57:00.000-06:00

Kristen and I, along with our daughter Mari, will be walking in the 2013 Spring Sprint in Saskatoon next Sunday (June 9th), in support of the Brain Tumour Foundation of Canada. Please sponsor us at KolsKrew.ca, and if you're in Saskatoon on the 9th, please come out and be a part of the event - we'd love to see you there!

And for a little trip down memory lane, here's Kol giving his speech at the 2011 Spring Sprint:

Off to a running start (with our friend and brain tumour survivor Gary):

See you at the Sprint!

Remembering

2013-05-21T21:10:00.000-06:00

Today has been on our minds for the last little while. It's hard to believe it's been a year, although I can't quite decide if it's hard to believe it's been only a year or if it's hard to believe it's been a year already.

We kept today pretty low-key. Tuesdays are normally pretty busy around our home - it seems to be the day that everything happens, like band, piano lessons, voice lessons, youth group, quizzing, bible study - but today we skipped out on most of those activities. We had pancakes for breakfast. We watched some Star Wars movies. We packed a picnic supper and went out to Kol's grave. We wrote messages to Kol on helium balloons and let them fly. We came back home, played some Star Wars Trivial Pursuit, and watched some Star Trek. And we cried.

Thank you all for your support over this past year.

"How many kids do you have?"

2013-03-07T10:23:00.000-06:00

I've been dreading this question since Kol died, hoping no one would ask it, yet knowing that someone would. How would, should, could I answer?

When Kol was sick, we got asked that question often. We saw many different nurses, social workers, psychologists, doctors, interns, etc., most of whom were meeting us for the first time. Often at some point during the initial meeting or exam, Kol would comment about what his sisters had done recently. Then they would either ask Kol "How many sisters do you have?" or ask us "How many kids do you have?"

We learned quickly when we were expecting Annika that there is a big difference in people's perceptions between 4 and 5 kids. When we had 4, people would say something like "You must be busy." but they weren't surprised. When we said 5, eyes widened, jaws dropped, and most didn't quite know what to say. After being annoyed or surprised ourselves the first few times we got that response, Kirk started to enjoy watching the responses we got.

It took a little while to get used to our identity as parents of five, but it is who we are. When we go places now, with our four girls, it feels like someone is missing. Someone is. Even when we are sitting together at home, playing a game or watching a movie together, I'll look around me, around the room, and it feels wrong. It takes a few moments to realize what the problem is. There aren't as many bodies around me as there should be. It's an instinctive reaction. I think, that after years of keeping track of where all the kids are, most moms (and probably dads, too) start to know intuitively how crowded the space around us should be. We don't need to do a head count to see where everyone is, we just know. I feel that there is too much space in my space now. It takes another moment for me to remember why there is too much space.

When we do something as a family now, o the rare occasions when all of us are together at a movie or shopping, and strangers see us, they see six people. They see what looks like parents with four girls. Rationally, I know that most people who see us barely even notice us, but I have an intense desire for everyone to know that what they see is wrong. I want to scream it out, for everyone to know, that we are not a family of six, we do have a son, too, and we are seven. I am a mother of five, not four. THAT is who I am, who I should be, who others should be seeing. Yet, in some ways, I am not. I need to learn to accept, that from now on, that is what others are going to see.

How many kids do I have? How should I answer that? I am, and will always be Julianna's, Mari's, Kolbjorn's, Birgitte's, and Annika's mom. Always. But Kol is no longer here for me to take care of. So, then do I say I had five? This doesn't really work, for two reasons. One, it opens the door for people to ask why I said had. I don't necessarily want to explain everything to a stranger. Two, it feels like I'm denying Kol's existence. He is an important part of our family. Still.

I will say I have five children.

Through the looking glass

2013-01-25T14:24:00.000-06:00

Christmas is over now. We made it through. Heading into the holiday, I felt numb. I know Christmas is supposed to tough for those who are grieving, and I expected it to be. I wasn't excited about Christmas, but I wasn't dreading it. My mom had health problems in the end of November, so she ended up staying with us for much of December. That gave me a good excuse to not shop. I really didn't want to, anyway. Christmas felt empty - and not just because Kol wouldn't be here to share it with us. This year, especially, I keenly felt the superficiality surrounding Christmas; the excessive emphasis on things, the merchandising, the busyness, rather than thankfulness. Our kids were excited about Christmas, but I noticed a difference in them that pleased me. They were excited to see their cousins, and spend time with the family. They made homemade presents for everyone, and couldn't wait to see the reactions. They were more concerned with what they would be giving, rather than with what they wanted to get. They weren't focused on gifts, and they were truly thankful for the gifts they received. Overall, Christmas was alright. Kol should have been there, though. We missed him immensely.

While Christmas wasn't as bad as we anticipated, the 2 weeks in the middle of January were much worse than we expected. We spent those days remembering last year - the broken blood vessel in Kols's brain, the subsequent hospitalization, and our trip to Oklahoma. We didn't anticipate how tough these days would be - didn't know how painful and vivid the memories of Kol's pain and the frantic trip would be.

January 7th.

Today has been much, much harder than Christmas was. I think the next few days will be tough, as well. I'm sitting here tonight, trying not to remember this night a year ago. Kol and I were going to play a game together. I don't remember what game. (Julianna tells me it was LEGO Ramses Pyramid, which Kol had begged for, and gotten for Christmas.) We had just gotten the table cleared off, Kol was setting up the game, and I was upstairs getting something when Kol started screaming. I thought that he'd had an argument with one of his sisters, and that maybe she hit him. I was wrong. Kol was holding his head and didn't stop screaming. After talking to Kol's oncologist, we took Kol to R.U.H. for a C.T. scan. Kol was in so much pain. He barely moved, and didn't flinch at all during the multiple (5? I think) tries it took to get an IV started. We eventually learned that a blood vessel had burst in the tumour, and that Kol would need to be admitted.

We were worried about Kol then, but I'm much more of an emotional wreck tonight, remembering it all, than I was that night. Maybe it was shock, maybe I just suppressed all of my emotions then. Maybe it's hindsight. We know the rest of the story now, and I don't like the ending.

January 11th.

Today, we all keenly remember this day last year. Throughout the day, the girls especially would comment about what they were doing at this time a year ago. This is the day that we left for Oklahoma. I don't want to remember; I don't want to relive the emotions from this day a year ago. I don't want to remember what it was like seeing my son in so much pain - feeling helpless, hoping that the trip we were taking would be worthwhile, knowing it might not be, and yet feeling absolutely certain that it was what we needed to do. I don't want to relive it, and yet I can't forget - I don't ever want to forget. I don't think I've ever experienced such a range of emotion as I did that day. I was certain we were doing the right thing. I felt peace, yet I was worried, afraid, uncertain. We didn't even know if Kol would survive the drive. There were so many uncertainties, so many questions, so many details to take care of,

After getting all of Kol's hospital discharge papers completed, we picked up our borrowed van, and then drove home. There, we picked up Birgitte, packed last minute stuff, transferred Kol and Annika to the "new" van, said good-bye to Julianna and Mari, and finally left around 5:00pm. On our way out of town, we got a phone call from Ulla telling us that we would have a police escort through Regina, and Kol would be allowed to ride in the police cruiser. We remembered the icy cold night, the stop at the gas station to transfer Kol to the cruiser, the drive through the city, and the icy stop at the edge of Regina to say tearful good-byes and move Kol back to his seat. I remembered the nerve-wracking stop at the border; I wondered that the morphine or the borrowed van would be a problem. As it turned out, only the bag of oranges that had been given to us was problematic.

January 13th.

Today, Annika was playing with a doll I haven't seen for a while. It was the one that Kirk had bought her at Target in Oklahoma City while Kol was having his PET scan last January 13. The doll brought back memories.

We'd arrived at our hotel around 10:30 the night before, and needed to wake up every 4 hours to give Kol his medications. Neither Kirk nor I had slept much more than an hour since we left Outlook almost 30 hours before. For that matter, neither one of us had slept much the night before we left, either. I was so worried we'd oversleep. I was exhausted by the time we got to the PET centre, but we made it on time. Birgitte and Annika were not allowed into the building where the PET scan was done, so Kirk took them to Target while I filled in paperwork.

After the scan, we raced to Tulsa, where the nurse had difficulties finding a vein for Kol's IV. We decided it would be best to go the the near-by children's hospital to have someone more experienced with sick kids put in the IV, then returned to the clinic for Kol's first treatment. We still hadn't found a place to stay in Tulsa, yet, either. It was a crazy day.

January 22nd.

Julianna, Mari and Obert arrived in Tulsa. By this time, we were much more relaxed. Kol was doing much better, we were more comfortable with the staff at the clinic, we'd experienced kindness from strangers, we knew our way around Tulsa (at least parts of it) and where to shop, we were settled in our hotel, and we were excited to have our family back together again.

We knew were were doing the right thing - I still feel strongly that we needed to take that trip. There were many good things that came from it. Mostly, it gave Kol quality of life that he wouldn't have had otherwise. While our trip was a good thing, the emotions, the confusion, and the feelings of loss and loneliness that were subjugated to our need to get things done and our worry for Kol at that time resurfaced now. It's been tough.

Candle lighting December 9th

2012-12-02T01:25:00.000-06:00

Shortly after Kol's death, Kristen and I attended a support group in Saskatoon for bereaved parents called The Compassionate Friends, and have continued going regularly since. It's been good to be able to talk with other parents who have lost children, to hear their stories of how they're coping, and what they are doing to honor and remember their children.

This coming Sunday (December 9th), the Compassionate Friends have their annual Worldwide Candle Lighting event. At 7PM in each time zone around the world, candles are lit in memory of children who have died, and kept lit for an hour until the next time zone lights their candles. It's a "wave of light" that goes around the world for 24 hours. While we won't be joining in the Saskatoon group's get-together this year, we will be observing this at home, and we'd like to invite you to observe it in your home as well if you're able. At 7PM in your local time zone, simply light a candle and keep it lit for an hour.

We will light our candle in memory of our dear son Kolbjorn. We will light our candle in memory of my brother Eric and our nephew Dag. We will light our candle in memory of all the kids we've met or become aware of through various cancer and brain tumour support groups who have lost their battles. We will light our candle in memory of all the children who have left their earthly home far, far too soon.

Sinking?

2012-11-21T23:37:00.000-06:00

It's six months today since Kol died. It seems like yesterday. It seems like a lifetime.

It's been a long time since we've written anything on the blog. I know there are still some who check here daily for updates, and I'm sorry it's been so long. It's been hard to know what to write. It's hard to know how open to be. I don't want to risk being judged. I want to be honest. I don't want to be negative. I can't be honest without being negative. While there are so many things that I feel I need to share, I haven't even really felt capable of writing lately. The thought of writing made me feel tired, overwhelmed, and confused.

At Bible Study this week, we talked about Peter walking on the water. When he was focusing on Christ, outside of himself, he was able to do something amazing - he walked on the water. As soon as he looked away and saw the wind and the choppy water around him, he started to fall. Fear took over. His trust disappeared, and he started sinking. He couldn't get back to the surface, and didn't know what to do to get back up.

During most of the last 6 months, I've felt like I imagine Peter did when he was sinking. I think our whole family has been feeling like that. We've been lost, sinking under the grief from Kol's death. I don't mean that we've lost faith, although Kol's death has certainly inspired us to re-examine what we believe, and why. I do mean that we've been surrounded by the reminders that what we believed to be a safe, secure existence has no guarantees; that the future we expect to have can be taken in an instant, and we can fall from that safe place, to chaos without notice. We don't know how to get back up to that safe place without calling to God for help, and yet we also know that He never promised us a pain-free life. We feel Kolbjorn's absence so strongly. It doesn't seem fair. We miss him. He should still be here, telling me all about the book he's reading, or explaining the purpose of all the little parts on the latest Lego creation he was building. He should be here.

I wonder how Kol would have changed in the last 6 months. Would he still do the blender dance, or would he have a new dance? What new songs would he have made up on his iPod? What games would he like to play now? What books would he be interested in now? What new ways would he have devised to get out of distasteful things? What else would he be interested in? Would he have grown taller? What kind of medical or neurological problems would we be facing? There are no answers to these questions, and that fact leaves me with a longing for the empty, Kolbjorn sized hole in my heart to be filled. The knowledge that it can never be filled again causes my heart to break just a little bit more.

The emotions come in waves - some days are easier than others. Even on the good days, though, I often just want to hide. There are days when I'm just angry, days when I'm numb, and days when it seems I can't stop crying. I do believe that someday, the ache will just be a part of me - that I'll be able to look at that hole, and accept that it's part of who I am. I can't do that yet.

Thank-you for continuing to check on the blog, for continuing to pray, for continuing to stand by us. Thank-you for the unexpected flowers. It's good to know we're not alone.

Remembering (through stories, pictures, and parties)

2012-09-13T21:30:00.002-06:00

This is our 200th published post on Kolbjorn's Journey, so we thought it'd be the perfect time to remember the past 28 months. I occasionally go back through the blog and and re-read the posts. I'm drawn to certain ones more than others - the fun ones, the big announcements, the ones that I had no choice about writing, the ones that have lots of comments. It's surprising how much we forget. It's surprising what we remember. It's good to remember. It's hard to remember.

Kol liked to remember. I'd often have Kol read through our posts on the blog before they were published, just to make sure that I hadn't said anything he didn't want shared, or if he had anything to add. After reading the preview, he'd start going back through the archived posts and re-read them, too. He liked remembering what he'd been through, and I know he was interested in seeing his life through our perspective. His favourite posts were the ones that had pictures, star wars references, or video, although he did read the hard ones, too.

Annika's newest word is 'remember'- except she says 'member. A couple of days ago, she said "Kol. Hands cold. 'Member?" She had insisted on holding Kol's hand after he had died, and when she did, she told me that his hand was cold. She remembered that. I've often wondered if she will have her own memories of him, or if she'll just remember him through the stories we tell about him. None of us have talked about Kol's cold hands, though. She does have her own memories.

One day at supper we'd been talking about Kol and Annika saw tears in Kirk's eyes.
     "Daddy sad?" she asked. Kirk said yes.
   "Kol died."
     "Yes, Kol died." answered Kirk
   "Kol love." This is Annika speak for "You love Kol." Kirk said yes.
     "Miss Kol?" Kirk nodded. Then Annika left the kitchen, and came back a few seconds later with the picture of Kol that is beside the couch, which she gave to Kirk.

We've been asked a few times if we talk about Kol, or if it's too hard to talk about him.   I could talk about Kol for hours. I'd cry, but it'd be good tears. Immediately after Kol died, I felt I needed to do as much as possible to preserve the memories I had of him. I worried my memories of Kol would be reduced to a short movie in my head of just a few events. I still worry about that sometimes. I wanted to remember his voice, his laugh, his smell, the feel of his hand in mine, the softness of his hair, his bald head, his breath on my cheek when he fell asleep in my arms, his hugs, his goofy blender dance, his machine-gun laugh. I wanted to remember the way he told me about what was happening in the books he was reading, assuming that I knew exactly what he was talking about. I wanted to be able to hear him explain how he beat the tough level on the Wii game he was playing. I wanted to remember what he sounded like when he was crying, when he was angry, frustrated. I want to remember how he looked in his suit, in the goofy hats he insisted on wearing.

Everything I've read about grieving says that it's a long process, and that it's important to give ourselves permission to grieve however we need to. I'm finding it's a crazy, topsy-turvy journey, and nothing is predictable. While I love remembering Kol, there are also some days now when I don't want to think about Kol. I don't want to think too much about the pain he was in, or about how horrible he must have felt some days. I don't want to remember even the good things, because even the good memories bring back the hard memories. I don't want to cry again, and any memory - even a good one - is a reminder that Kol was no longer here.   Kirk and the girls all swing between needing to remember and needing to forget, too.

I've been going to a mom's bible study since the fall of 1999. I've made some good friends through the group. This summer, the other families in the group got together and ordered portraits for us from Carla Chabot, and had them framed. They even came and hung them on our walls for us! It was an amazing and wonderful surprise, and we can't thank them enough! The photos are from the family sitting we had in 2011. We now have two photo walls, one in our living room, and one in the almost completed homeschool area. I sometimes sit down opposite the walls, staring at the photos, remembering. We also have a slide show of pictures of Kol as a screen saver. Some days, I've watched those pictures for hours. Other days, I can't watch them at all.

PARTY!

Kolbjorn's birthday is coming soon, and we will be having a "Remembering Kolbjorn" party to mark the occasion. We're hoping it will be a healing time, a chance to strengthen relationships, and an opportunity to remember Kol. Kolbjorn would be turning 10 on September 27th.

Details:
Saturday, September 22, 2012
2:00pm - 4:00pm
Bethlehem Lutheran Church, Outlook

We'll have cake! And fun.

If you have photos, or memories of Kol, we'd love to hear and see them. You can leave a comment, or if you'd rather, our contact info is here.

Three Months

2012-08-21T21:10:00.000-06:00

Kolbjorn died three months ago. It feels like a lifetime. It feels like just a moment. Sometimes, it feels like the last 3 months have all been a dream. Sometimes it feels like it was Kol's whole life that was the dream.

It hurts just as much today as it did three months ago. We miss him so much. Julianna and Mari spent a week at camp this month and Birgitte spent the mornings that week at VBS. While it was good to have time to just focus on Annika and Birgitte, it was really good to have everyone back together after camp. Except that everyone wasn't there. Kol has left such a big hole - I don't know how to fill it. I don't want to fill it. Our family dynamic has changed - it's still changing. I want what we had back.

Some days are better than others. On the bad days, I just want to hide, stay away from people. I don't want to deal with the awkward smiles from people who don't know what to say to us anymore. On the bad days, I don't want to smile, or pretend that I'm doing fine. On the bad days, I know that I'll burst into tears if someone says something nice to me. Today was a hard day. Earlier today, two sisters - friends of Julianna and Mari's - stopped by with flowers and a card, and said that their family was still thinking of us. I don't know if it was a random thing, or if they remembered that today is the anniversary of Kol's death. Either way, it meant a lot. I could barely stop crying enough to say thank-you.

On the good days, I say that I'm doing OK when they ask how we're doing - because, at the moment, I am feeling OK. Then I wonder - are these people going to think that we're doing fine overall? Are they going to think that we're getting over the grief? It may seem petty, but I'm scared that people think that we don't need them any more. We've said it many times before, but we are incredibly thankful for all of the people praying for us, thinking about us, showing us love and support. We still need you. And there are probably lots of other people in our "circles" - in your circles - that are probably hurting more than we realize, and who need love and support, too. We all need people. We need relationships. That is probably the most important lesson that I've learned through Kolbjorn's illness and death. We all need other people in our lives. Things are nice, but it's the relationships that are most important.

The recording of the tribute that Kirk and I gave at Kol's funeral is now on YouTube. I have to admit that I haven't seen it yet - I'm not sure that I can yet. However, we'd like to share it with you. The text of the tribute is below, if you'd rather read it, or read along. I did add and change a few things while I was speaking though, so the text isn't exactly the same. [Kirk adds: I have no idea how we managed to hold it together through that speech. Maybe we were still in shock?]

TRIBUTE TO KOLBJORN

(Kristen) Not all parents have an opportunity to do what we get to do today - to be able to stand up here and brag about our child to an audience who truly wants to hear what we have to say. Today, we will say good bye to our only son, but before we do that, we want to tell you more about him - about his passions, his likes and dislikes, and his heart.

(Kirk) When I think of Kol, I remember him stumbling out of his bedroom in the morning, hair sticking out every which way, rubbing sleep from his eyes, and with a hopeful smile on his face asking whether he can go play on the computer, never remembering that the answer is always "get dressed, have breakfast, and then we'll see". I think of him sitting at the kitchen table with a snack of sliced apples and almond butter, curled up on the living room couch with a stack of books and comics beside him, or up on his top bunk, surrounded by LEGO. I think of him down in the family room, perhaps watching cartoons on Netflix, or playing games on the Wii, or out in the backyard, chasing (and being chased by) his sisters. I see him laughing, with a twinkle in his eye, a smile on his face, enthusiastically talking to anyone who would listen about whatever topic currently had his interest - LEGO, Star Wars, a Wii game he was in the middle of playing, a book he was in the middle of reading, a movie he had just watched, what happens in our mitochondria or even the intricacies and mysteries of Kinder Eggs.

(Kristen) Kol was a happy baby - as long as he got to eat when he wanted to. Even as a newborn, he loved snuggling. He'd put his head on my shoulder, and snuggle right in, and go to sleep. He loved being sung to - but regular lullabies, or children's songs didn't calm him. Old hymns did. When I sang Amazing Grace, or Peace Like a River, Kol would almost instantly relax. When he got a bit older, Kol would play with my hair - twisting it around his finger as he drifted off to sleep. Just last week, I noticed him twisting his own hair around his finger as he tried to sleep in spite of his headache.

(Kirk) Kol was a late talker. He barely spoke a word until he was well past three years old - but then he started talking in complete sentences, and had so many stories to tell. Even then, though, he often preferred non-verbal communication. He made up his own sign language, which he seemed to enjoy expressing himself with - however, it often seemed that he made us guess what he was trying to tell us, only explaining himself verbally after we became frustrated. Two years ago, while recovering from surgery, it took him a while before he started speaking again. The signing, however, came back quickly - although the only one I could recognize was the universal "cuckoo" sign. That particular sign was a favorite of his to describe me. The day he died, in one of his last lucid periods, I made a bad pun to try to get him to laugh - but all I got was the "cuckoo" sign. It made us laugh instead. And then he smirked.

(Kristen) When Kol was a preschooler, he discovered "screen time". He learned how to operate the mouse on the computer, and how to run the VCR. Kol loved watching movies. He'd have one favourite movie at a time, which he'd watch over and over again, as many times as he could get away with. By about the 4th or 5th time through the movie, he'd have most of the dialogue memorized - right down to the inflections in the actors' voices. Kol loved playing on the computer, too. He'd play phonics games at starfall.com., and go shopping for toys online. We once discovered that he had a Veggietales shopping cart with over 5 thousand dollars worth of toys and videos in it. It's good he didn't find our credit card, too. Right around the time Kol turned 4, I decided that Kol was watching way too much T.V., so I started reading to him every time he wanted to watch a movie, or play on the computer. He had learned the letter names when he was little, but when he was almost 4.5, he refused to answer me when I asked him to tell me what they were. I thought he had forgotten them, so we started reading alphabet books again. A week later, I was driving through Saskatoon, and Kol told me - word for word, what was on a billboard we had just seen. Later that day, while driving past the town hall, Kol said "T-o-o-wn office - Mom! That says Town Office." He hadn't forgotten the letter names after all. After that day, Kol began reading better and better. Within 2 months, he was reading simple chapter books (like Magic Treehouse) independently.

(Kristen) Kol has always loved books. When he was a toddler, he would choose 2 books, which had to go with him everywhere he went.   The titles changed every week or two, but he'd always be carrying 2 books with him, under his arm. That love of books lasted. When he learned that he would be eligible to receive a wish from the Children's Wish Foundation, Kol chose books, but he needed some place to store all of those books - so he decided on a "clubhouse library." The library was delivered to our backyard last October. Kol spent many hours sitting out in the clubhouse over the last 7 months reading.

(Kirk) Kol had little fear of addressing large crowds. The earliest example I can think of was at our congregation's annual meeting 4 or 5 years ago, in our old church building - some of you here may remember this incident. Right in the middle of the meeting, Kol burst out of the room where the kids were playing, raced right across the meeting hall, and as he was running he loudly announced "Don't worry, I'm just going to the bathroom!" This fearlessness served him well later. His voice rang out loud and clear whenever the Sunday School sang, nearly drowning out all others at times. He had a significant speaking and singing role as Sgt. Tibbs in our local community theatre production of "101 Dalmations," which he handled like a pro. And over the past year, Kol became an in-demand public speaker, giving addresses at fundraising events for organizations like Camp Circle O' Friends, the Brain Tumour Foundation, and the local Relay for Life. Kol enjoyed being in the spotlight, but somehow he didn't let it go to his head - when he was done a speech or a performance, he was back to being a kid, running around and playing.

(Kirk) Kol was both a loner, and a very gracious host. He loved it when people came to visit. He tried to give every visitor a tour of the house - even the neighbour kids who spent hours everyday playing there. One day, some friends stopped in for a brief visit just before meeting someone else for lunch. Shortly after they arrived, Kol came to the living room with a plate full of soda crackers (the only thing he could reach in the pantry) and insisted that everyone took one. As much as he liked visiting, he would often get tired of it quickly.   Then he'd grab a book or magazine, find a comfy spot, and start reading. Even then, though, he loved sharing what he was reading, and would try to explain an interesting, or funny part in the story.   Usually we had no clue what he was talking about, not having read the story ourselves, but it was fun hearing his excitement.

(Kristen) Kol loved intensely. Our girls' middle names are Hope, Faith, Joy and Grace. Although Kol was named after his grandfathers, we've often thought/joked that Kol's middle name should be "love". Kol was passionate. He didn't just like something, he loved it - he was completely absorbed by it. He loved reading. He loved LEGO, Star Wars, and Super Mario. He loved his family - especially his sisters. He loved his friends of all ages, and he inspired others to love him back. When he was little, we called him "the charmer." He seemed to instinctively know what to say or do to win people over.   I don't know why, or how, but he was drawn to certain people.   And they were drawn to him. Through his honest smile, quiet strength, and complete enjoyment of the simple things in life, he has shown us how to love too - to reach out and latch on to those things that are important to us.

(Kristen) We will miss Kol. (Kirk) We'll miss his smile, his dry sense of humour, his stories about his latest video game conquest. (Kristen) We'll miss his snuggles, and hugs. (Kirk) We'll miss his machine gun laugh, and his sensitive heart. (Kristen) We'll miss his eyebrow wiggle, and his crazy hair. (Kirk) We'll miss his quiet presence on the couch, curled up reading a book. (Kristen) We'll be forever grateful for the 9 1/2 years that we got to spend with Kolbjorn, and for the lessons that he has taught us. (Kirk) We thank God for the past two years, because they made us realize how truly precious the time together was. (Kristen) We thank God for the promise of eternal life, for the hope that this is only a temporary separation, and for the hope that we will one day be reunited with our dear boy.

To God be the glory. Amen.

We said in previous posts that we want to continue blogging - and we do. I do. I still have lots of things that I want to share, and I hope that there are some people out there who would still like to read what I have to say. I'm sorry that I've made you wait so long between posts. I'd like to say that will change, but I know I can't make promises. It takes a lot of emotional energy to write what I want to say, even if writing is cathartic. It's just that, on many days, I cry enough without facing the tears that inevitably come when I'm writing. I will continue writing. I just don't know how often.

Perfect Rain

2012-07-15T00:46:00.001-06:00

For as long as I can remember, I have liked rain.

It started raining as we left the hospital with Kol on the night that he died, and gradually became more intense. Shortly after Kol died, we drove through heavy rain. Kirk told me that when he was little, he thought rain was God's tears. Maybe God was crying with us when Kol died; it's kind of a comforting thought. The rain had stopped by the time we got home, but the ground was wet, and the air smelled fresh, like it does after the rain. It's strange what details we remember from pivotal times in our lives. It rained parts of the next day, and Tuesday evening we had what I think was the first thunderstorm of the season, complete with lightning and loud thunderclaps. It rained on Wednesday as well. The weather was warm for a couple of days, including the day of Kol's funeral, and then we had rain again for two days.

While some people were probably upset with the rain, I was pleased. I needed that rain. Well, I guess I didn't need it, but I like to think it helped me heal, or at least cope better with what was happening. It matched my mood. Some say rain is dreary - depressing. While I think it can be so, especially after a long period of cold weather with unrelenting rain and darkly overcast skies, I've usually felt that rain is calming, comforting, relaxing. I used to love standing outside, getting soaked on those warm summer afternoons when the warm, gentle rain comes suddenly.

Maybe the reason I like rain is the mysteriousness of it. It's full of contradictions. Rain is subtle, changing; it can be soft and gentle, yet it can be immensely powerful, damaging and dangerous. We don't understand it. Water drops are small, harmless, yet the chinese water torture is considered one of the most cruel kinds of torture there is. In literature, rain is sometimes used to accentuate feelings of sadness, grief, loss and pain, or to amplify the difficulty of a task. Sometimes rain symbolizes cleansing, renewal, and new growth - the beginning of something new. I love thunderstorms, too, both the devastating power and awe inspiring beauty. Storms symbolize anger, intensity, even danger, and yet they too are cleansing, refreshing, renewing. Lightning signifies wrath, anger. If you've read any Greek mythology (or Percy Jackson), you'll remember Zeus' masterbolt. However, lightning nourishes the soil, causing new growth.

Now, when I look back at some of the more pivotal days in my life, I remember there was rain. I was thrilled that Kirk and I drove through a heavy downpour on our way to Saskatoon for pictures on our wedding day. There was rain the evening after Kol and I left the hospital when he was born. I remember driving through rain on our way to see my dad the night before he died - we had celebrated Kolbjorn's 3rd birthday that day in Saskatoon.

One night, when Kol was little, we got caught in a particularly fierce storm on our way to Christopher Lake. While we were pulled over to wait until visibility improved, I worried that the noise and lightning would scare the kids, so I talked about why I like storms. Julianna, in her simple, 5 year old way, said that lightning was a good thing - that God made lightning in order to help people find their way home in the dark - the lightning was guiding the lost travelers home.

Right now, we're experiencing a storm of emotions: guilt and relief, guilt because of the relief, faith and fear, uncertainty and hope, joy and mourning, sadness, grief, loss and appreciation for what we have.

Maybe the storm we're experiencing is causing new growth in us. Actually, I have no doubt that it is. I just hate the pain that we have to go through in the process. I don't like seeing our children or Kirk in pain. There are times when we can laugh at a memory of Kol - his blender dance, his head bob, or his giggle. I hope these are glimpses, glimmers of a time ahead when thinking of Kolbjorn won't be so bittersweet, flashes of light leading us home.