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.

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