Friday, 4 November 2016

The Right Wolf


"You can take a road that gets you to the stars. I can take a road that will see me through."  
Nick Drake

"Well, I'm glad you're still here," she says.  And just like that, she pours out the love and dispenses salted caramel chocolate biscotti - always.  I'm always glad to have spent time in her company and we talk, we laugh, we pray and sometimes we cry.  She offers me acceptance, pure and simple and in this moment, I am glad I am still here too.



Sometimes it feels like waiting is all I've known in recent years. There's been a lot of waiting with Jasmine.  Waiting for hospital appointment cards, waiting for surgery instructions, waiting for treatment plans, waiting in hospital corridors and too small windowless rooms.  Waiting for scans, for results.  And the wait and see if she's grown, if the cancer's come back - or not.

We talk about how everything happens for a reason, how everything happens in God's time, how there is a plan and if it's meant to be, it happens.  If it's not, it's because it's not time yet, or it simply isn't meant to be.  I wonder if there really is a reason for everything and I'm not sure there is, not sure there isn't.  I think sometimes things just are the way they are.  I don't ask "why" too much because some things I just never am going to know the answer to and I could drive myself crazy trying to understand.  I simply don't understand why children get cancer, and die, every single day.


Finn, Jas and I stretch out our bare toes together in front of us and cuddle up for movie night.  We make popcorn, we throw a blanket over us and we talk about feeding the right wolf.   We embraced this wolf thing after watching Tomorrowland.

So when she finds me and she can't put reason to what troubles her and there are no words for what she doesn't understand but the pain of it threatens to engulf her; when she finds me and her voice is small and she snuggles in and whispers "the wrong wolf is winning."  In that instant she doesn't need to say anymore and I can hold her in it for a time, then together we'll chase the wolf away and give victory back to the right wolf.   Finn can ask me, "which wolf is winning today?" and it grounds me to think about what I'm grateful for and there is always, always something to be grateful for.

We are living a snapshot of life that isn't the most comfortable, easy or happy.  It's broken pieces all laid out in front of me and like a jigsaw puzzle, some pieces fit when you try them and some don't.   Some pieces I just have to wait to rebuild and that friend and I try and figure out what it is I'm supposed to be doing, learning, and living in this waiting time.

As I rest in that friends company who says I'm glad you're still here, we crunch on our biscotti, sip the coffee and I'm grateful that she's right here with me taking the road that will see me through and learning to wait well.

Thursday, 1 September 2016

Gold

It’s 1st September and today I will wake up and put my brave on.  I will get dressed, I will walk my dog and I will drink coffee and I will wear gold.

I will take my daughter to meet her Grandmother and revel in the life that she breathes in to her bones and be grateful that she is on her way to a pool party with her brother, family and friends.  The clouds can gather, the rain can come and I will be grateful, just plain grateful.

I will meet my friend and we’ll talk and we’ll laugh and we’ll cry a little.   When that small girl, she’s not so small anymore, puts her hand in mine and it’s warm and my heart fills, I will think about how some days it still catches me unawares and can feel as raw as the day they told me she had a mass in her brain.    I will never tire of looking at her in this day. I will never stop thanking God for the marvel that she is.  Twinned with that, I will never stop feeling the pain of what she has endured.   How helpless a mother can feel, as she’s unable to take away the harrowing ordeal that her daughter has lived through in her short life. 

This summer we have lived large.  We have embraced life and we have laughed.   With hospital appointments looming for Jasmine, I choose to and fully believe her good health and recovery will continue.  I will believe for cure for her and for every child and parent that is faced with a cancer diagnosis.   I know what it is to walk that path, and keep on taking the next step.  The mascara Mondays come, and they come more often than I’d want.  But because she’s the bravest person I know, she inspires me to put my brave on and step out boldly in belief. 


I’ll wear gold this month, for my girl, for your girl, for your boy, for your brother, your sister, your son, your daughter, your grandson, your granddaughter, your nephew, your niece.  I’ll wear gold for the ones who earned their angel wings and I’ll honour their bravery and their lives. I’ll wear gold for the children in treatment this day, for the ones who were treated 5 years ago, and the ones who were treated 15 years ago.  And I’ll get my brave on and I’ll keep right on believing this day, this month, this year and every one that comes after.

Thursday, 2 July 2015

Jasmine's Journey

It's stifling hot right now.  The temperature sores and my energy gets zapped by mid-afternooon and all I want is another cold drink and a nap.  Instead, I'm running round getting packed up for a camp trip.  It's the first of the year for the children and me and usually we have already been at least once.  We're late starters.  There seems to have been a packed calendar with activities for both the children and me.  It tells of a normal healthy and busy family life.  I like it.

There are still the days marked on the calendar that say BCCH - Jasmine appt.  They are scattered throughout the months and we just spent a marathon day there on Monday.  Jasmine had her neuropsychological evaluation.  She spent 4 sessions with a psychologist and assistant with some breaks in between having her knowledge and abilities tested.  In reality though, she's being assessed to see if there's damage from brain surgery and radiation treatment.

She loves the day.  She enjoys the "games" she gets to play.  She is quiet though and the doctor asks me if she's anxious.  Of course she's anxious.  Every time I set foot in the place I am transported to another realm of feelings.  I can't describe them.  It's hollow, it's empty, it's grief, it's relief, it's elation, it's horror, it's gratitude, it's survival, it's love, it's dark, it's light and it's all rolled in to one and there's no harnessing it or controlling it.  I can be perfectly fine but then it hits you from left field on a Wednesday afternoon at 4pm...... I never see it coming.   So is she anxious?  No shit Sherlock! No doubt there's something in there that gets stirred up for her when she goes, even if it isn't a needle phobic MRI day.  It's just the cancer journey.

"She has performed incredibly well!"  I am told.  And I break out in a huge smile.  We chat some more and I hear about how academically able she is.  Then I hear about the "areas of concern."  That though her brain is incredibly able, she has some damage to the neurological pathways that control the execution of tasks - whatever that may mean.  In short, she takes longer to do some things and sometimes memory plays a part.  She may need support in school in the coming years.  My emotions get stirred up again, and I'm awash with gratitude that she's alive, doing well, that her recovery is being tracked so she can get all the help she needs and that today she has no evidence of cancer in her body.  Then I'm suddenly feeling heartbroken and angry that she needs support because of the damage cancer and treatment has done to her body and brain.  Then suddenly I'm feeling glad because she had proton radiation therapy in place of radiation and "it really saves the brain."  Then I'm fiercely pissed off that her brain needs saving and she had to have radiation in the first place.  It's a jumble of feelings and I feel I don't know what - it's just that mixed up place that parenting a child with cancer is.

Last night that bright and beautiful girl ventured downstairs to tell me that she was feeling sick.  She was clammy and though the fan was on it was stiflingly hot in her room.  I asked if she wanted to sit with me for a while, but she said she was tired so could she go to her room and could I go with her.  After I re-opened all the windows - she'd closed them as had heard a story that a tarantula had escaped from Science World and no way was that spider climbing in her window - I cooled her with a cloth and tried to soothe away the worries.  Inside I was laughing my head off and loving her character and the fantastic and interesting person she is and will become.  I prayed for God to hold her and help her.  I watched her looking all clammy with her brow furrowed and her eyes glazed over as she was slipping in to sleep.  From nowhere,  I was suddenly transported to the night she was admitted to hospital.  She looked the same.  Last night I watched wanting her to close her eyes and find rest and sleep and I couldn't help but silently cry a river of tears.  So different to watching that expression and wanting her to open her eyes, keep opening her eyes so I knew she was still with me and had not yet left this world.  The ache and sorrow is as raw and fresh as it was that night.  I don't know if it heals with time or is just what I will carry forever.  How can I make sense of all this?  Sometimes I think I must be going insane and that I must be the only person who feels like this - and surely as she's doing so well, I should be absolutely fine.  Most of the time I am but those triggers come and I don't always see them ahead to prepare for them.  And I wouldn't even begin to know how to prepare for them anyway.  Does anyone?

So Jasmine's Journey is this shared journey for our family.  Each of us traversing the inclines and rough terrain as best we can, loving the smooth sailing and free falling of the better days.  Life is a little like that for all.  I'm learning that the best I can do is just keep putting one foot in front of the other and take the terrain as it comes, living in that moment alone with whatever it brings for my girl and me.


Friday, 26 June 2015

Dream

Linking up with the Five Minute Friday crew over at Kate's Heading Home page.  Today our prompt is "Dream"

Father, 
When I embarked on this great big adventure I was full of excitement, anticipation and hope.  I dreamed big!  I hoped for so much.  My vision was beautiful and strong and enticing and I felt all things were possible.  
My great big Canadian has not turned out the way I had hoped or expected. I look all around and I see shards and fragments of all parts of my life.  No area has been left untouched and I have a broken heart and broken dreams.   And now I am captive by fear of falling.

My Darling, 
Yes, you see shards and fragments of all parts of your life scattered around.  I know your heart and all the dreams you hold and held.  When you see brokenness, I see strength and beauty.  I see faith and hope rising.  I see that you are the light now, not the picture perfect vision that you once held.  Do not despair for I will lift you from all these broken pieces and place you in the dream I have planned for you.  You cannot even begin to imagine all that I have in store for you and with you.  You are most precious and beloved and when I work to bring about endings, I have already determined a new beginning.  You might not be ready and sometimes you need to be content to just be.  Because when you are still, that is when you know I am God.  I am sovereign over all the brokenness, but know I can restore, redeem and rebuild and will not leave you here.   


Wednesday, 17 June 2015

Firsts

There is that old saying about doing something that scares you every day.  Today I did something that really scared me.  It was something so simple, yet I had a fully physiological reaction to my nerves.  My palms were sweating, my stomach was a tight knot, I felt sick and I was visibly trembling.  Actually I was shaking.  I found myself either holding my breath or breathing rapidly and when I stood my knees were shaking so badly I thought I was going to fall over.   I was truly scared.

What was this great and frightening thing I undertook today you might ask?  I can admit to feeling a little embarassed to share for it was nothing greater than playing my first violin recital to a roomful of people.  There were about 10 of us in the program, and I was the oldest student there.  The youngest being around 4 years old and the oldest of the group except myself was probably 14 years old.  So the room was full of proud parents and grandparents, aunties and uncles there to see their children play.  With my situation, I was the parent - my children were the ones in the audience. 

I knew I was nervous but I was actually surprised at how this fear took effect physically over me.  I haven't felt that way since the day Jasmine was in surgery having her brain tumour removed.

So yes, it truly was taking part in something that scared me. I wonder why I was that scared?  When I really consider this I realize it is born out of insecurity.  For me, knowing that a roomful of people are all watching my every move, and listening to every note, whether I hit it perfectly or go terribly wrong is not something to be relished.  I can also recognise that an element of vanity plays in to this.  I am a woman the wrong side of 40, I have more pounds on my frame than I used to, more grey hairs, more dry skin, more creases round my eyes.  Having all eyes on me for the solid 3 or 4 minutes it takes to play the piece is also nerve-wracking.  A broken heart or two, rejection and trials can do this to a woman.

So how did I overcome all this panic?  I prayed before I left home.  I wore my "brave" bracelet and looked at that word before I got up there.  I wear it for Jasmine and when I'm feeling small and afraid it reminds me that despite how small she was, she had courage and bravery beyond her years to take on all that she did during treatment.  Before I began playing, I decided not to bluff my way through with false bravado.  I shared with the audience how nervous I was and asked for their grace.  I said if I played poorly it was in no way a reflection on my excellent teacher.

I can play this piece perfectly at home and it would appear I can play this piece passably in front of a room full of people.  I somehow got the notes out and began breathing again when that oh so kind audience cheered loudly for me at the close of the piece. 

I'm glad I did it, but I'm not sure I am in a hurry to do something else that scares me.  When I think about that saying, I don't think we get the opportunity most days to do something that gut wrenchingly scares us.  But with one scary event accomplished maybe I learn a little bit more about myself and the strength I actually have.  I learn a bit more about my character, what I can accomplish and where my limitations lie.  Taking on that challenge somehow empowers me to keep going and perhaps that parachute jump that Finn wants to take on isn't so out of the question after all.  But let's not get carried away.... we'll work up to that one and take on a bit of zip trekking first I'm thinking!

Friday, 15 May 2015

Follow

Joining Kate Motuang at "Heading Home" for Five Minute Friday, when we write for 5 minutes without worrying whether it's right, we just write.  Join us here :)

If I follow you, it means I have to have a measure of trust.  I have to place faith in that thing unseen.  I have to believe that you have my best interests at heart and will lead me safely through all this messy life.  I've followed before.  I've followed my impulsive nature, my hair-brained idea.  I've followed a man across the world, the latest "can't be missed" tv show and diet fad.  I've followed painstaking progress of loved ones recovering from cancer and I've followed journeys that end with them being called home. 

Following can leave a great big gap in my heart and soul.

So, if I follow you, it means I have to get a bit of my brave on.  I have to walk believing that the path I'm on is prepared by you.  I've learnt that my own nature will trip me up, but it's also the essence of who I am and it's OK.  There's a strength or two I'm building as well as recognizing the weaknesses.  I'm learning that the path I'm on can still be full of twists and turns, can be an uphill gruelling struggle, but the freewheeling downhill is such a blast.  I'll follow with the assurance that you fully know the way, like a weathered and worn map-book and as long as I lift my eyes and follow, I really can't lose my way. 

Thursday, 26 March 2015

Break

Joining Kate for this week's Five Minute Friday.  The prompt is "Break"

I remember lots of people telling me.  The words would come.  "You really need a break."
I heard "you'll burn yourself out"  "you're doing too much"  "when do you get a break?"
But you see, I had to keep on going.  Because everything around was broken.  There was a time when it all just fell apart.  When life was so fragmented and broken that there seemed no possible way to put it all back together.  And there was no earthly way that it could all go back together, come together and work again.  Break?  It was broken.  All of it.
I didn't have any words to say to those people, who all spoke from a place of love, who could all see that burnout was just a breath away, that wanted to help me, love me, care for me.  I had no words to say and just kept on keeping on.
I'm so grateful that faith is a gift.  That we don't need energy for that.  That all we need to do is open our heart and our hand and receive.  And then the break comes.  Because when everything is broken and your heart rips wide apart.  When you have oozed every last drop of life from your broken body and you can still cling to Him.  That's when you're broken.  And that's when the break comes.  It rises like the sun.  Faith rising and light, hope, courage and strength to keep taking the next step.  And the next one and they tumble into the minutes, hours, days, weeks and months.  And that's the break I take until one day, the broken doesn't feel so broken anymore.