Happy Birthday, Kol

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"

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.

Spring Sprint 2013

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

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?"

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.