"How many kids do you have?"

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

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

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.

Remembering (through stories, pictures, and parties)

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

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

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.

Adjustments

We've been home for a couple of weeks after spending a few days being completely lazy at Christopher Lake.  We had no agenda, no expectations to live up to.  We slept in late, played in the (cold) lake water on the warmer days, and watched mindless, silly television shows (like America's Funniest Videos, Wipeout, Just For Laughs Gags, and Corner Gas) on the cooler days.  We watched "Milo and Otis" and remembered how Kol had laughed at the animals when he saw the movie the first time.  It was wonderful to just "be" - to not have any agenda, or list of things we needed to do.   We even got to visit with some old friends on the last couple of days there. 
 
It's a month today since Kolbjorn died.  I don't know how to describe the adjustments we've been forced to make in that time, without Kol.  I'm shocked at the complete range of emotions we've experienced - pain and sadness, relief, guilt and surprisingly, moments of joy.  It's certainly not what I expected.  My dad is the only other person that I've been really close to and lost.  It's so much more painful losing Kol than it was losing dad.  I've cried more tears than I thought possible. 

While we were at the lake, it was easy  to accept that Kol wasn't with us, that he had died.  We had had 2 years to get used to the possibility that Kol might die, and although I never really believed he would, we still had been forced to face that as a possible eventuality.  Maybe it was easier to accept his absence because the lake was never really Kol's element.  Whenever we were at the lake, Kol would disappear into a book and watch as much T.V. as he could get away with.  He liked swimming and playing in the sand, but whereas the girls would spend all day at the beach, Kol got tired of it after about an hour.  Maybe it was easier to accept Kol's absence because it didn't seem real yet that he was dead. 

It was tough coming home again.  Grocery shopping was surprisingly tough - and it wasn't because of the 3 people who stopped to give us hugs and ask us how we were doing (in  the 15 minutes we were actually in the store.)  I cried when I walked past the mangoes.  Kol loved mango sauce.  Then I saw straws and even reached out to grab a bag - I remembered that Kol had used up the last of his favourite green straws when we were working so hard to keep him hydrated - and then I realized that we wouldn't really need bendy straws much any more - and we still have other colours.

One day, maybe about a week and a half ago, Annika was standing in the hallway outside of the bedrooms, and was really fussy.  Mari was with her and at first tried to guess what Annika wanted, and then tried to distract her.  Mari is really good at knowing what Annika wants, and at distracting her if necessary, but this time, nothing worked.   Finally Mari got exasperated and asked "What do you want, Annika?"  Annika leaned against the door frame to Kol's room, and said, "Kol".

We've been trying to keep busy and get on with our lives, and aside from the constant ache of missing Kol, we've been able to get decisions made and to start being productive.  I pretend to garden.  I've had a herb garden since a year or two after we moved to Outlook.  It did well for a couple of years, but it's been neglected recently.  I haven't had much interest in gardening or yard work during the last couple of years.  This year, I've had an incredibly strong desire to get outside and get not only the herb garden, but also the flower beds somewhat rejuvenated.  After I went and spent way too much money on herbs, I found an article about health benefits of gardening which talks a bit about how gardening works as a treatment for depression.  Maybe I instinctively knew what could help me heal.  Or, it could be just like other years, where I have a big burst of energy in the spring, only to lose interest in the summer.  I enjoy buying and planting and planning, but not so much the upkeep. The girls have been joining me outside this year, helping me weed the flower beds. 

Kirk walked in the Spring Sprint on June 9th.  He walked 5km in the pouring rain with his dad.  Birgitte, my sister and brother-in-law and I walked a little way, but Birgitte's feet got sore quickly in her (actually Kol's) Star Wars rubber boots.  We went back to the park, and stood in the pouring rain waiting for him.  ( To be honest - the rain really wasn't that bad, though - we did all have rain clothes on - and it wasn't cold at all, and although it rained constantly, it wasn't really "pouring".)  It was tougher that I expected, though, to see others there who are still fighting brain tumours. Not only was I concerned for them, but I have to admit that I was jealous that they were still alive to fight when Kol isn't.

The following weekend - last weekend - we took part in the Relay for Life here in Outlook.  It was hard being at the Relay this year.  We knew it would be tough, especially after the sprint, but I had no idea how hard it was going to be to be a part of the Relay.  Kirk, Julianna and Mari were on a team, but all of us sat with the team, cheered them on and walked.  Annika got lots of stroller rides.  It was especially tough hearing someone else give "Survivor speech" that Kol had given last year, and seeing all of the luminaries around the track "in memory" of Kol, rather than "in honour" of him.  Kol should have been there.  I know both Kirk and I felt Kol's absence so very intensely that night.

Then came Father's Day.  Our first holiday without Kol.  We made a big deal out of the day - got Kirk lots of cards  and surprised him with a trip to Saskatoon - for supper, and to replace the pair of jeans of his that I cut up while we were at the lake.  It was a good day - good that we kept busy and tried to fill it with fun.

Birgitte had her 7th birthday this week.  Again, we strongly felt Kol's absence.  Kol and Birgitte were such good friends, and Kol loved parties, and doing things for his sisters.  We still had fun - Birgitte's grandparents all came for lunch, and her aunt and uncle surprised her with a visit in the afternoon.  She also got a very special phone call from her godparents. Birgitte loved being the center of attention.

I guess life goes on - but the pain of losing Kol is becoming more intense.  It's getting harder to accept, rather than easier.  Our tears are much closer to the surface.  All of our emotions are, actually.  I'm sure this is a temporary part of the grieving process, but that doesn't make it any easier to accept.  We all have holes in our hearts - shaped like Kol.  It's starting to feel real that he's not here with us, and that he never will be. 

Kol bears

We were shocked at how many people came to Kolbjorn's funeral or sent us cards and e-mail messages.  I guess it shouldn't surprise us any more, knowing how many lives he's touched, but it does.  Kol was an extra special kid (yes, I'm bragging) and we miss him so incredibly much.

At the funeral, we gave away Kol bears.  Kol bears are little black stuffed bears.  

The name Kolbjorn, (or Kolbjørn as it is written in Norwegian) means black or dark bear.  Kol is an Old Norse word for black, and bjørn is the Norwegian word for bear.

Kolbjorn loved hugs and cuddles.  He would often come sit beside his mom, dad or a sister and rest his head on our shoulders or hold our hands. We sometimes joked that he was our teddy bear. While we can no longer hug him, or feel his head on our shoulders, we have a Kol bear to help us remember him.

Brain Cancer Ribbon

Childhood cancer ribbon

Each Kol bear has 3 ribbons.  The grey ribbons on the Kol bears symbolize mourning, and are also the symbol for brain cancer.  Gold symbolizes joy, what is precious, and the presence of God.  Gold ribbons also symbolize childhood cancer.  White is a symbol of resurrection and everlasting life.  

 
I know that there were people who weren't at the funeral, or who were but didn't get a bear.  We would like for anyone who would like a bear to remember Kol by to have one.  PLEASE - if you would like a bear let me know!  Or, if you know of someone else who would appreciate having one, tell me their name.  You can  e-mail me, or contact us however you want to.   We also have extra bulletins from the funeral.  Let me know if you'd like me to mail one to you.

I shouldn't be surprised at what kids say any more - our kids have had some incredibly insightful comments - but I am.  I just heard of a little girl who told her mom that she thought Kol stands for "Keep on loving".   It was so sweet, and so appropriate.  It makes me teary.  What makes this even more special is that this girl wasn't at Kol's funeral, so she didn't hear what we said about Kol and "love" in the tribute.

Kol loved intensely.  Our girls' middle names are Hope, Faith, Joy and Grace. Although Kol was named after his grandfathers, we've often thought or joked that Kol's middle name should be "Love".  Kol was passionate about the things he cared about.  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 - and he wasn't afraid of showing it.  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.

Keep on loving!


P.S. In case you missed Kirk's post from yesterday, he will be participating in the Saskatoon  Spring Sprint.  Check out yesterday's post for more information.  Also, I have another blog post almost finished, too, so that should be up in the next couple of days. 

Spring Sprint

I (Kirk) am going to be participating in the 2012 Sprint Sprint in Saskatoon in support of the Brain Tumour Foundation. The Brain Tumour Foundation has been a wonderful support to us these past two years - they have excellent handbooks for brain tumour patients and families, and the support group in Saskatoon is fantastic - so we'd like to be able to give back to them. This is the same event that Kol gave a speech at last year, and had so much fun running with some friends from the Foundation.

If you'd like to, you can donate online to pledge me - I plan to walk (definitely not run!) at least the 2.5km, and depending on how much it's raining, I may even do the full 5km. I know many have already donated to the Brain Tumour Foundation in Kol's memory, and this is very last minute, but thank you for any support you can give. If you're in Outlook or Saskatoon and would rather not use the online donation system, please give me a call and we'll see what we can work out.

P.S. - now that we're back from our family getaway at Christopher Lake, we've got some more blog posts coming over the next couple days. I guess we missed blogging!