Sunday, December 30, 2012

My Year in Review

As the hours tick by and we're getting closer to the new year, I wonder what I'm supposed to say about the old one. Looking back over the last 12 months, I feel like not a lot has changed, but really so much has.
What am I supposed to write about anyway? Am I supposed to write about feeling truly invincible for the first time, being around my people, drinking fizzy drinks by the pool in Vegas, looking at this city lit up with so many lights? Do I write about the struggles I overcame, the battles I won, the wars I made it through?
Or do I write about the slamming doors, the screaming fights, and everything I still - 12 months later - cannot handle? Do I write about the tears I cried, so many I thought there was nothing left? Do I write about how I let my heart break open on the back of an old grocery list while I was babysitting one night, and in that night I wrote the most truest sentence I know: I want to be enough for myself.

January began with good intentions. It was the month where I was going to stitch everything back together. The year 2012 began with longing, and anger, and watching chick flicks on TV. The month didn't end with quite as much ambition and inspiration as it started with, though.

In February things got better. It was a month filled with late night poetry, a month of doing big, bold things. February was a month for living.

March was for decisions, for choices, for loving without thinking and living in the moment. It was watching too many episodes of Grey's Anatomy and buying fancy shoes and letting go.

 April was a spontaneous month full of teenage angst. I went for a month without washing my hair, and I laid on the deck, wrapped up in a blanket, missing Spencer. We moved into our new place and I camped out on the floor and I cried because everything was changing.

May was for loving, for remembering to breathe, for making new friends and figuring things out with some old ones. I wrote stories with happy endings and some stories with not so happy endings. I lived in metaphors and I was optimistic and I began to understand light, but May was also the month when I was being prepared for the darkness.

In June I finished my grade 10 year. I got sick, and complained about being sick. I wallowed in my misery and threw a pity party and rained on my own parade. I was asked the most important question, about life, and what life was for me, and I decided I wanted to live, really live, whatever that meant.

I spent a week and a bit of July down in Calgary, and then in Edmonton. I missed friends and let myself be consumed by teenage emotions. I ran my first 5K, I went to the zoo, I watched music being made, and I learned what it is to live. And then the vigil began and the world crumbled underneath my feet and I knew it was only a matter of time before disaster struck.

August was for lounging by the pool, being surrounded by my people, and feeling invincible. I wrote the most powerful sentence on the back of that grocery list, I started eating Gluten Free, I wrote so many words it felt like I'd cried for a really long time, and I crossed something off my bucket list.

September was when everything crashed and burned. For me, September was burning red, just like the leaves on the trees. It was the month I got diagnosed, the month when everything I had worked so hard for was handed to me and all of a sudden I didn't want it anymore. It hurt more then I thought it ever would, and I had to learn to live all over again.

October was filled with more grieving, more confusion, more isolation and anger and frustration. I threw a highlighter against the wall and made this big orange mark. In October, I also began to learn who my friends were, who the people were who were going to fight for me and drag me up to the surface and teach me how to breathe again.

In November I turned 16. The Glycosade trial happened in November. My heart broke in a hospital bed, in a doctor's office, in a hotel room, at the CFR. My friend Taylor died in November, and I held the people I love closest to me. Friends stayed up with me until the wee hours of the morning, making me laugh, making me cry and reminding me I am loved.  I got my act together long enough to write a whole novel, and even if it was mostly crap at least I accomplished something.

December was full of truth like twinkling Christmas lights. I spent nights writing poetry, and discovering friendships that have become so important to me. Friends spoke truth into my life, leaving me to examine what it is I really believe. I got angry, and my heart broke all over again. I wrote so much I didn't understand what I was saying anymore. It left me battling big questions, questions I still don't have all the answers to, but I really wish I did.

2012 was not at all what I expected. Looking back over the year, I guess it wasn't as bad as I thought it was. The broken things, the sad things, the heart breaking awful things, they were all there, but in smaller pieces. Love was the biggest piece of all, overshadowing everything. It shone through in a late night conversation with a friend, an apology after a screaming match, someone looking into my eyes across the table at Subway and speaking truth into my life. It glistened loudly in the words, "I love you," in excited laughter shared between new friends, in first love and friends that end up surprising you.

In 2013, I hope to answer some of those unanswered questions. I hope to create, to embrace, to become. I hope I learn how to live, and I hope I love a lot. I hope to gain some understanding, and to learn how to let go. I hope to unwrinkle this page, and I hope I still recognize the person I see there.

Happy New Year!

This was my song for this year. I think it totally describes the year I've had. Take a listen, if you want. :)

Saturday, December 29, 2012

I'm the girl who always says goodbye but never knows how to leave

I know I'm always writing so you think I'm good with words but I can hardly express how I feel.
There's so much going on in this head of mine, so much I wish I knew but don't.
I wish I knew where I was going next, but I have no idea. if I did I wouldn't be hiding behind so many paperbacks and staring at so many blank walls, hovering in door ways, coming from no where and headed no where.
I'm the girl who always says goodbye but never knows how to leave.
Tonight is one of those nights when I wonder if I'll ever be able to write the things I want to, if I'll ever be able to figure out this thing they call life, if I'll ever be able to stop wandering long enough to get myself un-lost.
I feel like I can only repeat the words other people say, grasping at sentances and paragraphs with cold fingers, trying to find some wisdom in the words of others.
So this is me, trying to get it right this time.

I have solar powered confidence and a battery operated smile. My hobbies include editing my life's story, hiding behind metaphors and trying to convince my shadow that I'm someone worth following. You know, I don't know much, but I do know this: I know that Heaven is full of music. And I know that God - He listens to my heartbeat on His IPod. It reminds Him that we've still got work to do.

Monday, December 24, 2012

Twas the Night Before Christmas

It's the night before Christmas.
Everyone is snug in their new Christmas Eve pajamas. Tomorrow will bring the excitement of opening gifts and eating Christmas dinner with family.
But tonight is for silence, for listening for reindeer feet on the roof, for writing and contemplating and thinking how much things have change from last Christmas to this one.
We went to the Christmas Eve service at our church tonight. Last year we were in Manitoba so we didn't go to our own little Christmas Eve service and I found myself missing it, missing the way you saw friends as soon as you walked through the door and the beauty that went around the room as we all lit our candles.
This Christmas, I'll confess, I wasn't feeling very Christmasy. I was in the Christmas Spirit at the beginning of December and now that Christmas is actually here I was ready to be done with it all. Pack up the decorations, put away the tree, let's just move on with the time of year when everybody is supposed to be all happy and joyful.
And then there was the Christmas Eve service tonight and there was this one song that kind of changed everything for me.
It's been one of those years, one of those years when it feels like I am stretched and grown in every way.  It's been one of those years when you're broken down to nothing and then have to start rebuilding yourself again. It's one of those years when you kind of want to ask, "God, seriously? What are you doing here?" And I had to really ask myself if I believed God was enough to get me through this. There were a lot of days when I really didn't know. There are still days when I don't know, when I'd rather run from this place where God has brought me instead of continue forward, when I feel so broken and angry and sad and confused and I don't get it.

I was reminded of something tonight, something that I've been reminded of a lot over the past few months.
You are loved
It started with that one moment in early November in a hospital room and it's following me, being called out to me by mother's of friends and former piano teachers and friends. They all remind me of one thing: You are loved, more than you can imagine.

He loves me. He loves me enough to come to this sick, broken world and die for me. He loves me enough to not let me stay here in this place of pain and hurt.
He loves me, and because He loves me I can trust what He's doing.
And He says, "Something good is going to come out of all this, just you wait. Hold on, something great is going to happen."

My Soul Glorifies the Lord...

Tuesday, December 18, 2012


I want to write about being a teenager. I want to write about that moment when you’re in high school and there’s this guy and he looks like the toughest guy out there and then he looks at you and singles you out of the crowd and talks to you and you feel like you’re walking on air as you walk out of the school building. I want to write about when you get in a fight with your best friend and you end up screaming at each other because everything in that moment is so alive and vibrant and everything is being felt under a microscope. I want to write about falling in love, and getting your heart broken. I want to write about how sometimes things happen one way but when you play it over and over again in your head you change little bits and pieces of the script and then you remember it that way. I want to write about changes and snapshots of things you keep laying around like Polaroid’s and dried up flowers that you keep on a shelf in your shoe. I want to write about that one moment when everything else fades away and you’re there and you’re laughing and you’re learning how to dance again and it feels like its infinite.

 I want to write about all of these things because they are all parts of the story. They are all a part of this tapestry that is woven on the cusp of becoming something great. It’s like magic, like flashes of light and stardust. It’s breathing in and laughing and crying and flirting and being angry and feeling like your drowning and then… gasp… you exhale.

 It’s all about being brave, being heartbroken, being excited and being in love and being alive in this moment. That’s what being a teenager is about. And the bad things, they’re just pieces. Things shift and move and nothing stays the same forever, not even the things we think will ever go away.

 Everything changes, a fortune cookie told me once. Nothing is permanent. Life is short, enjoy the ride. What no one ever told me was how.

Friday, December 14, 2012

Cynicism and Nostalgia

I want to tell you how Tim McGraw is my favorite Taylor Swift song, and I’m not sure why, except it makes me feel nostalgic for a boy I never even knew. I want to tell you about movies, how I can never stay awake through the end, and that one time, in the dark basement, huddled under my favorite zebra blanket, I fell asleep like usual, and my best friend shifted next to me, letting my head fall onto his shoulder. I want you to ask me about adventures and tell me about your adventures, all the nights you stayed out, wished on shooting stars, wishing again and again that the night would never end, swinging high into the air at the elementary school playground in the middle of the night, tipping your head back to gaze at the stars, letting your hair drag across the ground and shrieking with laughter when a boy you’ve just met grabs your waist and, “I shouldn’t have told you I was ticklish!” and he just laughs back at you, and I want to tell you about the time I broke into a church and we ate Popsicles in the back room, ducking down whenever headlights grazed across the window, and I want to tell you about standing outside a boy’s house, everyone with their arms wrapped tight around their bodies to block out the cold, and I want to tell you about his mom inviting everyone in, and shivering on a wooden chair inside his house while you sip hot chocolate in an effort to warm up. Tell me about the way you grip onto memories with white knuckles, refusing to ever let go of them.

Reading this makes me nostalgic for a place I only went to once and a person I don't look like anymore.
Summer turns into Winter and people change and grow up and I know all of these things. I know that never again will things be like they were in that memory that I hold on to with white knuckles.
I'm much more cynical now then I was when I was that girl in the memory - the one who believed in magic. I felt more free then, more alive and bursting within my own skin, more passionate and spontaneous and I loved without questions. It's kind of hard to believe i was that girl once.
Sometimes I ask myself what I would do one thing for myself, one self indulgent moment, one moment of feeling totally spontaneous and alive, what I would do.

I was a lot less cynical once, believe it or not. I believed in the world, I had faith in myself, I had faith in other people, I trusted life a little more.

If I could do one thing, anything, I think I would write a million words that all felt like coming home. None of these words I write are what I think they will be about. Some of them are about desperation and heart ache, but some of them are beautiful, about life in all of it's forms, but mostly, whenever I write these words, they taste hopeful to me.

And so, after a night of fierce desperation and panic and frustration, I whisper the words I wish would be true:
Help me release Cynicism.
Help me let go of bitterness and frustration.
Help me release the cynicism about where I belong and who I am now.
Help me remember I belong here, that I am the girl who dances barefoot to Ed Sheeran love songs on the radio that sound like break up songs.

This week I began writing my story, the birth story, the death story, every minute of this transition from the girl in the memory to this one, and hopefully back again. A year ago writing the words I'm writing now would have felt so far away from the me I thought I was.
But it is my journey, my story, my truth. It is empowering and inspiring and hopeful. And I am working on releasing that cynicism and the bitterness, the unforgiveness and the pain. It's a long, hard road, but I'm working on it.

So I keep writing words that feel like home, and it makes me nostalgic for that girl I don't look like anymore, and for the place I loved once upon a time.

Monday, December 10, 2012

"The Great Love of My Life has a malfunctioning G-tube"

I'm sitting here afraid to cough, or sneeze, or move in the wrong way.
One of my greatest fears was confronted today.
This morning, my g-tube got caught on something while I was moving and got pulled out. The balloon was still inflated, it just wasn't inside my body anymore.
After that first moment of pain, when I actually saw that my tube was no longer inside of me, my reaction was, "Oh crap!"
I started shaking, and crying, and I called my mom.
Both of my parents were at work, and no one else was home. I was freaking out.
My dad called and talked me through how to put a new tube in (Which wasn't the easiest thing to do when my hands were shaking and stomach fluids were leaking out)
Long story short, I got a new tube in. I was staying drugged up on Advil and any pressure on my stomach hurt really bad.
Tonight it's really loose. I'm afraid if I move the wrong way, or cough, or sneeze something will go wrong and the tube will come out again.
I'm sitting here, all wrapped up in tape and bandages.
I have a malfunctioning G-tube. And suddenly so much depends on the malfunctioning G-tube.

"So much depends upon the transparent G-tube erupting from the gut of the blue-lipped boy. So much depends upon the observer of the universe.”

Friday, December 7, 2012

Need You Now

My friend wrote on her blog today about being tired.  I'm tired. Flares or Bad Days are one of those things you just can't avoid when you're chronically ill and yet they are a big deal. They are dramatic and messy and can send you tumbling back down the steps you just climbed until you feel as though you must start all over again.
I am peering around in the darkness. I am aware of my weakness. I am aware of my great need. I feel lost and alone. It's hard to remember why you're doing this in the first place.
Do not forget in the darkness what you have learned in the light.
The thing about bad days, for me, is that the rippling effects don't come so much from my physical pain but from what's going on inside my head.
"I need you!" My fingers are grasping around in the dark for something to latch on to, someone to hold on to that will tell me it's ok, that I'm not alone, that this moment of frantic needing will pass, that they've been there too.
"I need you!" I whisper in a voice that sounds much too tiny to belong to me.
"Don't ever be sorry for needing me," He whispers between the words.
I am in a place of desperate need. It really bothers me when I come to a place like this because I have this image in my head of how things are supposed to be. I'm supposed to be strong and I'm supposed to be able to handle this by myself and I'm not supposed to need people at 9:00pm to remind me I'm not really dying, that I can do this, that I'm not alone.

I don't understand everything that's been going on. While I am peaceful about it all I am far from understanding it all. I don't understand why babies who are only a few months old are born without iris's or why teeanger's get diagnosed with another chronic illness that sends life spiraling out of control.

I'm tired. I'm desperate. I don't understand. I'm needy and worn out and weary and I don't have this whole thing figured out yet, even though I think I should. I am weak when I feel I should be strong.

 He loves me. It's ok to need, to not understand, to not have it all figured out.
This raging world that I have been thrust into makes me fall to my knees, groping around in the darkness for a glimmer of light. This world which I have become a part of in a whole new way leaves me shedding tears for new little ones who have been thrust into it as well.

In THIS world you will have trouble, but I have overcome the world. (John 16:33)

Wednesday, December 5, 2012


I've stared at this blank page for almost half an hour.
Today was rough. It was a sick day.
Just from walking up a flight of stairs my heart rate jumped to 160. I was nauseous all day, and in a lot of pain. I couldn't eat and exhaustion settled in.
I stayed home from school and slept all afternoon.
Today I was surrounded by my weakness.

It's been a tough journey these past few months. I have been surrounded by my weakness, my failings and the places where I was not enough.
It's a tough place to be in. I've been here for a while - since getting diagnosed in September - and while some days it is easier to see the blessings then others there are days like today when I am tired of fighting this battle against invisible illness. I want to get better. I want to feel better. I want to be able to worry about school and grades and enjoy basketball games with friends.

It's hard some days, and I don't have it all together. Days like today come when I am weary and worn.
But these days too were planned out before I took my first breath.

Because.....pain.....for a God's stamp of love on your heart.
Pain is God saying...."Child. I am crazy about you."

Can you hear that? Through the pain and the tears and the exhaustion I can still hear the victory ringing inside of me: That I am claimed, that I am loved, that I am His.

Monday, December 3, 2012

A Sneak Peak at my Night

2 Corinthians 5:17
"If anyone is in Christ he is a new creation. The old has passed away, the new has come!