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.

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.   

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!

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. 

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.

Wait

And now we wait.  It's been 4 days since Jasmine had her MRI and it's 3 days until we go back to oncology and get the results.  This is the hard part.  We've never had to wait this long before.  We usually get to see Jasmine's oncologist on the day of the MRI, but that wasn't to be this time.  I thought I would be losing my mind, and earlier last week I was losing my mind.  I was fretful and anxious and the world felt all wrong.  Gearing up for an MRI stirs up the worst of memories for me.

I spent an evening with a friend and she prayed over me and has continued to pray for me and for Jasmine this week.  She texted me on the weekend, just checking in to see how I was doing and I told her OK, and that I was keeping myself busy and occupied.  And that great friend responded and her response made me smile in such a heartfelt way.  She said, "But hun..... didn't God tell u to "be still?"

And it comes like a steady heartbeat.  The smile starts at my lips but winds it way right through my soul.  Because instead of spiralling in to panic and pain, heartache and heartbreak, living and re-living all the scary memories and the what ifs, that this kind of waiting creates.  Instead of all that, I'm sitting content and smiling, because yes I can be keeping busy, but I can be so very still.  Still in the mind, heart and soul, so I'm not on such a crazed treadmill of worry.  Still in His presence and in His peace.  Heart beating, patiently waiting, and following His direction to just be still, and know He is God.

Jasmine's Journey - 3 years

I put down the phone and I feel exhausted.  It's a mid-week afternoon, the same as any other.  I'm sipping tea and folding laundry and there are paints on the counter with artwork from small hands drying all around.  Ten minutes earlier I didn't have this butterfly feeling.  The phone rang and the long-term follow up receptionist tells me that Jasmine has an audiology appointment coming up.  And that's just fine.  Jasmine likes going to audiology.  It's a game and she likes to play it.  Then she says we'll see Dr. Hukin in the afternoon.  And from nowhere we're back in the realms of oncology.  "Oh and endocrinology is coming up," she adds.  Then almost talking to herself she says, "wait, that won't work, because you'll need to see Dr. Hukin after the MRI and that isn't scheduled for a couple of weeks."  Then suddenly I'm holding my breath because somehow the whole MRI thing wasn't on my radar yet.  I hadn't been thinking of it - which is a good thing.  But I guess I usually start thinking about it round about the due date and suddenly here we are, and we've leapt from the everything's fine audiology to the everything's not so fine MRI scenario.
We are coming up on 3 years out from diagnosis for Jasmine.  It's a really big deal.  But it never ceases to amaze me how sometimes it's as though no time has passed at all, and the tears will prick the back of my eyelids and I'll blink them away.  And it grieves me because something as ordinary as an MRI scan can make me feel like I'm losing her - all, over, again.

Thursday morning I will go to work, and Jasmine will travel with her Dad to the hospital for her MRI.  I don't know if it's worse to go, or not to go.  It's really a day of anxiety which ever way you cut it.  I will take Finn to school and we'll carry on with the normal stuff that days are made of.  While I do that, a picture will be built on a screen and my baby girl will lie in that machine and I will want to hold her - just hold her.
The rest of the day passes and then I cry in the shower.  It's where we cry so our children won't see then we paint the smile and the "mum face" back on for bedtime routine and I tell Jas she is off to audiology this week.  Big smiles - she loves her audiology appointment.  I start to wonder when to mention the MRI to her.  We have learned that too soon and the anxiety for her builds.  Too late and the meltdown and panic about it overwhelms her.  I still haven't got it right.  Then the decision is taken from me as the hospital calls and she overhears my side of the conversation.
"Do I have an MRI soon?"  she asks.  And I reply soon, but don't say when.  She's not satisfied with that and asks "when" over and over.  I tell her it's at the end of the month.  And she still isn't satisfied. What date?  What day?  Until finally she knows.    A while later she wants to know who will take her.    A while later still, she appears from upstairs long after bedtime with tears.  I pull her on to my lap and hold her and ask what's troubling her.
MRI
But here's the remarkable thing.  The only part of the MRI that troubles her is the IV.  Three months of surgery and treatment and a following 3 years of maintenance appointments have left her needle phobic.  And I smile to myself at this wonder girl who worries about the scratch of a needle, while I worry about a silver shadow on a screen.  She is amazing.  And I reassure her no needles.  We'll use the mask, she'll be asleep when they remove the IV.  She won't feel a thing.  She is reassured and goes back to bed.
I think about all Jasmine has endured on her journey.  How cancer came to our home and ripped our lives and family apart.  How we have grieved.  How we have prayed and hoped.  How we have watched while treatment has broken her body, then watched as she made slow progress recovering. I think about the anxiety that comes with every appointment, the fear that this disease will come and wreak havoc with my family again.  I think about how far Jasmine has come, how much she has accomplished, how she is like every other 8 year old in her class.  I think about her warrior brother and how he's overcome his fears of losing his little sister.  How he has watched her at her worse and hidden from her pain at times and at others let her put her head on his lap to watch tv together when she's been too tired or sick to sit.  I think about my marriage - the grand canyon - how we have been so separate and far apart and isolated unsure how to breach this chasm between us so we've travelled on opposites sides for a time.  I think about how we've built a bridge to find each other again.
And I think about that email I sent to the family about to leave for Boston to begin proton beam radiation.  Forced to leave their home and at the beginning of their 5 year old daughter's journey.  I wanted to go with that mama and hold her hand.  I wanted to hold her like I held Jasmine, and tell her it's alright, take her to all her appointments until she knows the team there, find her a place to stay.  It's what I wanted to do, but how do you wrap all that up in an email or phone call?  So I tell her about Boston and that going there is going to be OK.
Jasmine's MRI will happen Thursday, then we wait a week for results.  We wait and wonder whether it's clear.  And I realize that we keep on putting ourselves through this scanxiety because if it's clear, it amounts to someone holding me.  Someone telling me it's OK, that's there's nothing to fear and for now, it will be alright.

Send

Hey there,

It's been a while since I jumped on board, but it's Friday so here's my link up with the flash mob of writers who gather weekly and write, without worrying whether it's just right, we just write for five minutes.  This week Kate has prompted us with "Send"

When I send this to you, know that I would rather be knocking on your door.  When I send this to you, know that though the words poured out and flowed through ink to paper, that I would rather have poured out my heart as we poured out the tea.  When I send this to you, know that I thought about you and as my hand ached writing the words - (oh yes, the craft of handwriting makes my hand ache these days as the techno typing world takes over - a hand written letter is a rarity and joy indeed!) - as my hand ached, my heart ached with the not seeing you for all this time.  I will wrap up my news in an envelope and send it to you, and it's written and delivered with love.  But know this - I would rather be sealing myself in an envelope and have the post deliver me to your doorstep, where the tangible real of some moments with some shared life with you, would mean the world to me.