Saturday, 13 September 2014

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.






Friday, 20 June 2014

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.

Friday, 9 May 2014

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.

Thursday, 1 May 2014

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.

Friday, 4 April 2014

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.

Wednesday, 26 March 2014

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.

Thursday, 20 March 2014

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.