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.

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.

Three years

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:

1. Kolbjorn had a cough for most of his life
2. He would often be awake before six am
3. He would wear the same pair of socks for weeks 
4. He'd wear the same shirt for a week
5. In the summer, his footwear of choice was dress shoes
6. He had a dance for everything 
7. He liked clothes shopping
8. He wanted to go to Denmark 
9. He'd have one toy that never left his side 
10. He was visited by the 501st Legion 
11. Some of the meds he was on made him the worst person to be around 
12. Some of his other meds smelled terrible 
13. He never cut his hair after chemotherapy 
14. When he was little, he said he would marry his cousin 
15. He didn't mind playing Barbies
16. He would say the full name of books and movies 
17. He'd play video games standing up, right in front of the screen 
18. He'd watch movies over and over until he had them memorized
19. He wanted to play the oboe or trombone
20. If he could not find clothes of his own, he would wear his sisters'
21. 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

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

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.

"Poor kid"

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

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.

Candle lighting December 9th

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?

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.