Gold

It’s 1^st 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.

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.

Breathing Room - Book Review

I'm taking part in Revell Publisher's blog tour for upcoming titles and this one really caught my eye.

"Breathing Room" and the tagline - letting go so you can really live - I found very appealing.  Thinking of most of the women I know, we could all use a bit of breathing room at some time, rather than being swamped in the endless to do's that seem to litter our days.

So I embarked on reading this with great anticipation.   Amazon wrote  "An honest conversation that helps women transform their feelings of failure and shame into a grace-filled life of self-care and self-compassion."  

It's a big statement for Tankersley to live up to and I did in fact find that this book did deliver an honest conversation.  Tankersley writes with candid honesty which I found somewhat refreshing.  She describes her own personal struggles and manages to do so without sounding self-pitying and there was an element of humour to her work. I found myself smiling at some of the situations she described herself in.  However, when I had finished the book, I can't say I felt directed in any way towards helping myself transform any feelings of failure or shame in to a grace-filled life of self-care and self-compassion.  Tankersley delivers a narrative of how she managed to do so, treating herself with a lot more care and making sure she put her own needs first. 

Tankersley also embraces the concepts laid out in twelve step programs and mentions our need to develop a relationship with God.  I was unsure whether this was supposed to be a Christian author or not as there is little biblical reference throughout, but more the secular view of building relationship with God, however you understand Him.  For that reason, I think this would be a popular read with a much broader audience than Christian women.

I enjoyed reading her narrative and was encouraged to see how she'd tackled her own difficulties but I can't say this book lives up to it's title or it's promises, and found it told how one woman overcame her depression and difficulties by becoming more self-nurturing.    

Care

Taking part in Five Minute Friday over at Kate Motaung's page.  Click the link and join us.  Today we're writing for 5 minutes, unedited and without worry with a prompt word

CARE

I care about you.  I care about what happens to you, how your day goes, when you're happy and when you're sad.  I care when you tell me you're feeling a bit teary, and the news has got you down a bit.  I hear you rally and your spirits regain momentum as you say you'll get your fighting head on, that it hasn't got you beaten.  I feel the distance so incredibly deeply and I care that I'm not there.  I care that I can't see you face to face daily and share this with you there, instead of from here on distant shores.  You are brave, you are strong, you are an incredible inspiration to me.  I thank you for birthing me in to being and I care about this brilliant life.  I care about you.

for my mum

Because

It's Friday - so that means we're linking up with a flash mob of writers over at Kate Motaung's page to write for 5 minutes, unedited without use of the delete button or worry about it being just right.
Click on her name to join us :)

Because....

So I'm rubbing my eyes and my aching back and I'm wishing that I hadn't just stubbed my toe on the train track that is laid out on your bedroom floor.  I just stepped on another zillion pieces of lego and I'm kicking them out of the way.  I'm trying to extract myself from your bedroom that I came in to read a bedtime story 45 minutes ago and all I really want is to go downstairs and drink hot tea and drink in all the evening quiet.  But instead I'm holding a girl close and whispering what the day tomorrow will bring.  She asks, "what will we do tomorrow?" even though she full knows she's at school all day, then has a dance class that she loves.  Her big brother will swagger his way through the day - being on the cusp of teenage boyhood is no mean feat.  But she'll ask me anyway and brother will listen in.  Just because .... just because she is stretching out those last minutes of being together before the sun goes down on the day.  And I'm there in her room, then in his room to talk about the day and what tomorrow will bring.  Just because the aching back and stubbed toe and hot tea waiting can all wait.  Just because when the smell of sleep on their skin is beckoning and I feel warm breath close on my face, I'm in the glory moments and I stay, I linger, because there's no other place I'd rather be.

Going for Gold

September rolls round and my profile photo changes on my Facebook page.  This year I have a photo of small girl with the iconic ribbon, this time in gold and the words, "I wear gold for Jasmine" emblazoned across the front.  It's a beautiful graphic created by a kind stranger who gives her time freely to make these for us.  It's Childhood Cancer Awareness month.  But the truth is, I don't want this as my Facebook profile picture, I don't want to have to raise awareness for childhood cancer and I don't want to wear gold for Jasmine.  Not my little girl.  I also don't want to wear gold for your little girl, or boy, or any of those children whose images I see, and stories I hear and meet in the waiting rooms and treatment rooms of our hospitals.

I can't make you aware of the fact that childhood cancer exists.  You already know, but like I used to do, you probably live your days knowing about it, but safe in the knowledge that it's someone else's burden to carry, and affects someone else's family, not yours.  Until one day it does.  And it stops the breath in your body and breaks your heart in an indescribable way.  It breaks something inside of you and no matter how your journey goes, grief-stricken shards of that heart never find their way back to being whole again.

Childhood cancer is rare.  But ask any parent of a child diagnosed with cancer and they will argue that it isn't rare at all, because we meet altogether too many families affected by this, altogether too many parents who are going home to empty bedrooms where once they held their child and rocked them to sleep, and played hide and go seek.  Their child now hidden from their view until another time.  The angel wings we pray will never come prey on our minds anyway.

In real terms, very little is known about childhood cancer.  Jasmine was diagnosed at 5 years old with Grade 3 Anaplastic Ependymoma.  I could find little information about it on the internet and was told it was one of the rarer cancers.  From time of diagnosis to now, there have been too little new developments that help children with this type of brain tumour.  They knew there were 9 different types of Ependymoma but couldn't tell us which kind Jasmine had, they couldn't tell us if it was fast growing or slow growing.  They couldn't tell us if chemotherapy would help Jasmine or not, nor could they give us any kind of prognosis for her long term health and recovery with any kind of clarity.

It's a frightening thing.

So, as it's Childhood Cancer Awareness month I find myself wondering what it is I would actually like to make you aware of.

Well, financially more research needs to be done and more funding is needed for research, but I am skeptical about this.  Raising money for Cancer Research is a very worthwhile cause, but a minute amount of the money raised finds it way to research in to childhood cancers specifically.

I don't know what I can do to change this but what I do know is how you, you reading this post about Jasmine's Journey make a difference to me.  I would say a heartfelt thank you to those who helped and continue to help families in need when cancer hits home.  A family affected by childhood cancer needs your support and often in ways they don't even realize.

They need to be prayed for and prayed over, they need a meal made, they need a ride to the hospital, they need an older or younger sibling being made to feel special, they need gas cards, parking meter money, a shoulder to cry on and an ear to listen.  They need to know that it's OK to laugh, to splurge money on a massage or a lunch out when money is so tight because your income is knocked out by the interruption to your working life.  They need to know that tomorrow will come,  and today's challenges won't have to be endured again in quite the same way, each day will look different, but the sun keeps coming up and with it a day with renewed graces.  They need to know that crying and crying some more is OK, and even when you daren't cry because you're afraid you'll never stop, it's OK and to go ahead and cry anyway.

My daughter's cancer diagnosis has changed me and I will never be the same again.  I am so very blessed to be sitting here today and be able to share that Jasmine is my living miracle girl.  An hour ago, I sat having dinner with my husband and son as Jasmine is at her friend's birthday sleepover party - awesome!  I was enjoying my dinner then looked at the empty chair at the table and suddenly there it was - the rawness of the pain that hit me that this could so easily be how our dinner table looks every night and the hurt I feel for those mamas out there who have an empty chair at their dinner table now.  I had to breathe and blink back tears that had no place in the middle of a happy dinner time.  But those times come, unexpected and uninvited because that's how it is for parents like me.  I live fiercely every day now and I love fiercely too.

So tonight I'll go hug my children extra long, look at them, really look at them and see them for the extraordinary gift they really are.  I'll turn off my laptop, stop surfing Facebook and go and sit with them and build something with lego instead.  I'll stay up late with them and look at the stars, eat pizza and have the chocolate bar.  I'll laugh - a lot.  I won't be afraid to be silly and let my children laugh at me.  I'll give them my full attention when they want to tell me about the mine craft house they just built - though I might be bored out of my brain by that description it might be the most important thing in the world to them and the most important choice that I ever make in my life to choose to notice and listen.  Because while they're building mine craft structures, I'm building relationships. I'm building up a boy and a girl to become a man and a woman and what that looks like in a family.  I'll dance with their dad in the kitchen and I'll play the music loud even though it's close to bedtime and it should be quiet.

These days I live each day, just one at a time.  Because that is all that is given.  So I gratefully accept that gift and thank God that the journey is just that - a journey and we're always moving, moving through the sorrow and embracing the joy along the way.  Raising awareness?  Yes! This cancer ribbon is gold - gold for Jasmine.  It's a painful ribbon to pin on.  But the pain makes the release and the joy all that much greater.

Release

Linking up with Lisa-Jo Baker today to write 5 minutes unedited without worrying whether it's right or not - the joy is just in the writing.  Click the link and join us.

Today's prompt is RELEASE

I don't know when I started to do it.  I would feel the ache in my chest later, in the evening and know I had been doing it.  Holding my breath.  So stressed and anxiety filled to actually have been holding my breath to the point that come bedtime, I could feel the muscles in my chest aching from it.  A trial can come and literally knock you off your feet, knock you off course so far that the feeling of being lost is consuming and it's a long road back.
Pray, pray, pray and just keep putting one foot in front of the other.  I felt like a shell.  A husk of a person and I didn't know where I'd gone.  And the voices would come saying,  "you're so strong, you're doing amazing." and I'd nod and smile and think that simply is not true.
But keep going my friend, keep putting one foot in front of the other, keep waking up in the morning, keep believing, keep trusting, keep doing the daily grind that has got you so beat that you wonder what the point is.  Keep going, because there's a day coming that is so light and bright that you will wonder at it's magnificence and beauty.  The day when the valley is no more and you're soaring the heady heights and view is beyond anything you can imagine.  The release is exhilarating, the freedom from the grief and burden will renew your mind and spirt like no other thing.  Keep going because your air to breathe deep and long and pure is waiting for you to step in to it's light.  And when you realize it's in your power to surrender yourself to it and believe the release is coming, then you're there and you know you've done it, race well run my friend.

Grateful

We're linking up with Lisa-Jo Baker for 5-minute Friday.  A place where we can get together to share our thoughts and write for 5 minutes, without worry if it's just right, we just write.

Today's word is Grateful

Go -

So we've been crazy busy since school got out at 3, getting snacks and juice, gathering dance clothes, shoes and the lost yoga mat, finding his picks for guitar lesson later, "and you know my teacher said I need a new binder, mum" at the last minute.  Crazy busy and I'm tearing my hair out as I realize somehow I have to squeeze dinner in to this evening and these children and I urge them along with words like, "quick" and "hurry up." The dog looks at me with his sad puppy eyes, waiting for his walk that has to happen at some point to, and what time does it get dark these days I wonder?
Then driving home from these activities and all their crazies I look in my rearview mirror at a boy and a girl who are chatting to each other, laughing and singing to the song that's playing, the dog has his head resting over the back seat between them, and all three are smiling and I feel it to my core - love and gratitude for the precious cargo in this car right now.
So I say, "hey kids, I just wanted to say I think you two are great, you are really fun to be with and my favourite thing to do is spend time with you.  I love you both so much and I'm lucky because you're both awesome.  I have so much fun with you both and I love hanging out together."
Silence.  Then my eldest, the boy, says with a slight smirk and a twinkle in his eye, "what's that mum?  Didn't hear a word?"
Small miss giggles.  "me neither" she says.  Then he says, "say it again mum.  I wanna hear it again."
And that makes me grateful too.

Grace for my Mess

Linking up for another 5-minute Friday with Lisa-Jo Baker.  Join us!

Five minutes writing unedited and this week's prompt - Mess

It's a mess.  It's all a mess.  Two years ago a tornado swept through my life, my heart, my soul, my very being and I was shaken and bruised and battered and felt like I scarcely lived to tell the tale.  It's name was childhood cancer.  And my daughter carries the 5 inch scar on the delicate skin of her beautiful neck and now hidden beneath her hair.  And that event creates changes and wreaks havoc and leaves a mess.
We were given lots of information, we were given numbers for support groups, we were talked through the mechanics of surgery, of pathology reports and treatments.  What we were never told, and what I didn't expect was the chaos and mess of a life turned completely upside down.  This childhood cancer gig messes with your head, your heart, your home, your marriage,  your relationships, your friendships, your finances, your emotions, your soul, your faith and yes, it gets messy.  We've endured the mess, been in survival mode, been broken, been broken apart, then been broken together and been in a messy season of grief.
Now my home is still a mess, physically, and I have stuff that needs dealing with from two years ago, my heart is a mess and has stuff that needs dealing with from two years ago.    My family is messily carrying on together, doing the best we can on any given day.  And I pray daily for grace for my mess, for strength to keep on keeping on, and for the belief and trust that the storm has passed.  That the mess can be sorted out, that there's always, always someone willing to get in the mess with me and help, there's always a word of encouragement, a victory cry of another child a step closer to cure and always, always God, waiting patiently for me to find rest in Him and then set me on the path to clarity, cure and the calm that always follows after the storm.

Writer

Joining Lisa-Jo Baker who inspires us weekly with her shared heart and writing.  She challenges us every Friday with a one-word prompt and encourages us to join in writing with her for just 5 minutes.

This week's word is

Writer

It's all I wanted to be growing up - Writer - well that and a truck driver!  And I do neither.  I don't call myself a writer because what I am is a doubter.  This blog is where I can try it out.  Where I wish I could wax lyrical and create something beautiful and meaningful, like the other blogs I read, the books, the shared experiences, the stories, oh the stories.  Someone commented this week that I write so beautifully and have followed my blog with Jasmine's story in particular.  Others have also commented and I don't know what to say when someone offers praise.  Thank you and something about how writing helps me, and that's the truth, it does.

So I tentatively step out there and do it, not because I am a writer, but because something burns in me to do this, to create a word where there was a blank space.  And the words carry the weight of my thoughts and feelings and they need to be out there, because if not, my soul is just not right, so I just write.

Without writing about Jasmine's journey, I would have broken completely down.  I had to somehow capture those moments and expel all that was in me, for me, for her, to remember and know how far we've come.  I had to record the gratitude I felt and it was a letter to God every single time, if only I wrote it and He read it, then all was well.

So not for audiences, or swelling ratings, or a high profile writing career (ha!  I can dream!) do I write, but for the soul connection that it brings with glory spilling out for my maker who made me this way.  In the middle of the night, on scraps of paper in the kitchen with spaghetti sauce spilling over, with drops from the bath as the children splash and here in the quiet of morning before the world wakes us with me, it's my time to write and a writer be.

The Ripple Effect

There are bubbles in the bath and we're talking about the rainbows that can be seen in them.  How light can be reflected, refracted, how when it shines through a raindrop, a prism of colour can create a rainbow in the sky.  I'm no physicist, but together we lean in and can see the wonder and the beauty.  Then it's gone and we're back to blowing bubbles, trying to catch them and hold them.  They're fragile and they pop if you touch them.
And life feels that way.  Fragile.  Intangible, and it will pop and be gone like that bubble in a nanosecond.

I'm drying my hands and the silver band on my wrist glistens, reminding me of the journey, reminding me to keep breathing, reminding me to keep going.  It's the eve of another visit to Children's Hospital.  Not the dreaded MRI this time, endocrinology.  We got this - it's a breeze.  But I find myself fending away haphazard memories and thoughts that are preying on my hard fought for confidence and tranquility.  The fear is never too far away.

I think again of all that light, and how I described radiation to Jasmine.  And then I think about how her treatment is responsible for this follow up appointment at Children's, not the cancer, but the route to recovery.  The medicine given to bring cure can often feel as hazardous as the initial diagnosis.  And I wonder when a child's body is overcome by the effects of chemo, and goes in to organ failure, does that child die from cancer or from complications of chemo - did the cure take their life or the disease?  They blend together and I'm not sure and it stops the breath in my body.  I choke and turn away, keep breathing.

I look at a 7 year old girl and wonder what the doctor will say.  Is she growing?  Last time we saw Dr. Dan - all first name terms at Children's Hospital - he thought we might be starting treatment by the next visit.  Artificial growth hormone.  The radiation could have damaged the pituitary gland, it controls and is responsible for  a whole range of things that the body needs.  If she's not growing, or it's slowing, it's a marker that "she might need some help with this."

Which reads we ready ourselves for the next step of the journey, the side effects on the side effects, and the drugs and the side effects that they produce and the other side effects and this is how we roll post cancer diagnosis and treatment with our baby girl.

I think about how Jasmine is always throwing off her sweater, wants to wear shorts in the middle of March when there's snow outside and will merrily run round in a pair of teva's over rain boots when it's damp and the windchill is - 20.  She may no longer be able to regulate her body temperature.  She may have convulsions, may develop epilepsy, may go in to premature puberty any day…. or not at all…. she may, she may, she may….. and I can't reconcile myself to all this, so I counter with the battle cry of she may not.

And yet, there's something so remarkable about her recovery that I can't dwell on the what if's for too long.  She sits in the middle of the bath tub and the ripples spread out, reaching the edges and the further out they get, the gentler they become.  Two years on the ripple effect is lessening it's death grip on me.  It's there, but the waves that come don't always rip me to shreds and drown me.  They're gentler the further out we get,  I'm learning to ride the wave.  The mascara Monday's come and go, but the miracle keeps on going.

Joy

Linking up for another Five Minute Friday with Lisa-Jo Baker.  Each week she gives us a prompt and we get the freedom to write for 5 minutes unedited, without worrying if it's just right, we just write.  Click the link and join the community



The joy is in the detail.  It's as simple as that.  Like the way she can giggle and snuggle in so close that her breath is like feathers on my neck.  I thought I knew what joy was.  I thought I understood that emotion.  These last years have been so vastly different for me.  I thought I had had a broken heart before, but Jasmine's cancer took me deep to a pain I had never experienced.  A raw anguish that still viciously can snap at my heels and heart any time it chooses.  A beautiful 5 year old girl - facing the extreme of her own mortality.  5 years old - cancer.  They just should never be in the same sentence never mind the same beautiful body of a little girl. She could be your little girl.  She is mine. Jasmine's faith and forbearance and joy in the details have been the mainstay to keep me sane.  Just as that pain has depth, I thought I'd known joy before, but not to the extreme of having a second chance at life.  To have held her slipping away from me, then to hold her now with life coursing through her being.  She sings, she runs, she dances, she laughs loud and long, she shows me what it looks like to see the beauty, to live it, to be joyful in the details, to notice and to care.  There is nothing as radiantly joyful and truly glorious as looking her oncologist, her neurosurgeon, her endocrinologist, her audiologist, her radiologist, her nurse clinician, her social worker, her comrades with all their battle scars and chemo weary bodies in the eye and celebrating with JOY those three letters and one word.  MRI - clear.  It does something from the inside out, every single time.  And I will fall to my knees every single time, heart fully thankful for His measure of grace and love that is given.

Crowd

Linking with Lisa-Jo Baker as a flash mob of writers this Friday.  We're given a prompt and then we write, without worry about whether it's just right.  Join us by clicking the link?

Today's prompt is ~

Crowd

Ever seen those videos which show a single person, still, while the crowd of people round them move in fast frame speed.  So many people, so many places, so much to do.  That seems how life goes these days, but oftentimes I feel like that solitary person alone in the crowd.  It throngs around me, and hums, coming to life, creating it's own breath of life and moves forever forward and onward, gathering momentum.
I don't know why, but I crave the stillness in it all.  As though if I jump in with the crowd, I might just get swept away, might not be seen, might not matter.  It might just take me where I don't want to go.  So I'll keep trying to figure that out, longing for simplicity and quiet - but NOT solitude.

Because being part of something bigger is a beautiful thing.  Belonging is exquisite.  Community is warm and caring and can create something extraordinary.

I don't wish to do this life alone.  So please, count me in!