Thursday, 11 April 2013

A Year On.... Jasmine's Journey

The cherry blossom is out and I stopped to admire it and breathe in the scent on my walk with the dog this weekend.  The sun's warmth made it all the more fragrant.  I missed the cherry blossom last year when in Boston.  Oh yes - they have blossom there, along the Charles River the trees were laden with it.  Cherry pink and white, pure, fragrant and bold.  But the scent made Jasmine feel sick and I was glad when the wind came and swept these fragile beauties to the ground.  I could relate to that nausea and I was reminded that during my pregnancy someone brought me lilies from their garden. They were stunning but the scent overpowered me and I felt sick to my stomach.  I put them in a vase outside my patio window where I could see them but not smell them, for fear of the intense nausea consuming me.

Memories as vivid as those cherry blossoms have been in the forefront of my mind these past days.  I saw Jasmine's baby book on the shelf and flipped through the pages the other day, heartened by the things I'd recorded there, things I'd forgotten.  Towards the back is a section to record her firsts - first solid food, first sleep through the night, first steps, first lost tooth, first words, you know how it goes.  All the stuff we mums store in memory boxes of the mind and tangible, those great big milestones that our babies make, mark and grow in to. These last 12 months have heralded a year of firsts for Jasmine.  She's taken a different journey and brought us along for the ride.  Where do you record the firsts she's chalked up?  First ride in an ambulance, first IV, first surgery, first anaesthetic, first stitches, first need for a wheelchair, first time in intensive care, first time being intubated, first physiotherapy session, first audiology test, first oncology consult, first neuropsychological evaluation, first endocrinology appointment, first CT scan, first spinal tap, first MRI, first dose of radiation being administered.    I put the book quietly back on the shelf and turned with sadness back to the day and the room and the present - there is no room to record these firsts.  Are they milestones? memories? nightmares? gifts? A bit of all - they just are.  They make up Jasmine's journey.

I read last night a mum's plea from Children's Hospital as she hid under the covers of the cot bed by her daughter's side and sobbed.  She was crying for help - for words to encourage her, she was breaking her heart and wrestling with the knowledge that she'd birthed her daughter in to this life of misery and pain.  I knew her heart and her mind.  I knew how she couldn't bear that her daughter was going through this, that she was somehow responsible, that her baby girl was being courted by death, and there wasn't a single thing she could do about it.  That she put her anguished brokenness out there on our social media support page, not for sensationalism, but longing for someone to say, it will be OK, your daughter will be fine.  Your daughter will be fine.  We will cling to that sentence while all the evidence points to something so vastly different.  Your daughter will not be fine - in fact she's dying right in front of your eyes, right now, so hold on tight, it's going to be a bumpy ride.  That is why we hide under bedclothes in the dark muffling anguished sobs so our children don't hear.

So what did we floundering and failing parents respond?  Well, I cried and I'm pretty sure that I wasn't the only parent doing so.  Then we offered what we could, we told her it was OK to cry then the oxymoron of telling her to stay strong. We told her to hang on, we reminded her how far her daughter had come, how much she had already overcome and we told her we were praying.  I did stop in my day and pray for that little girl.  I stopped right where I was and asked Jesus to be right there in that room, under that cover with that mum and hold her in her grief.  I asked Him to refresh and renew her spirit and hope.  I prayed that she would know that her daughter is safe in the hands of God who loves her infinitely more than we ever could, that when our strength ebbs away there is always one strength, never ending, never failing, an enduring love that will walk us through the shadow of death.
And then I got down that baby book and poured in to it a year of firsts for my daughter, yelling each one with some nameless emotion and primal need to do so, then stopped, spent with the exhaustion of feeling it.

When this journey beats this track - the one minute waltz of my mind plays "she will live, she won't live, where is God?"  If God is good all the time, how can a good God let this happen?  How can I keep believing, keep trusting, keep holding, keep faithful?  A few months prior to Jasmine becoming critically ill I read the book "One Thousand Gifts" by Ann Voskamp.  She answers that question in the book.

Jasmine had a malignant brain tumour.  She was diagnosed with anaplatic ependymoma a year ago.  It even sounds toxic. Then the grace - what an amazing gift to be blessed with such a skilled surgeon, a dedicated team of more than 15 paediatric specialists all with Jasmine's best interests at heart.  What an incredible community we live in, who rallied and stood with us and behind us offering support on every level. What a gift to have such friends who held my hand at Jasmine's bedside, while I held hers, who held me when I sobbed, and prayed over me and for me.  What a truly inspiring son who went without question to stay at friends whilst I couldn't be at home being his mum, who never troubled, complained, or acted selfishly, but accepted the new order of life - he let me be where I had to be, knowing I didn't love him any less, but all the more for his wisdom and behaviour beyond his years.  To be graced with such gifts is rich blessing indeed.

A year on I will never tire of looking at that girl, never weary of requests to read, play a board game, find a hundred new hiding places for hide and seek, colour a picture with her or come to a tea party she's throwing for her bunny and dogs.  Ann Voskamp counts the One Thousand Gifts from the God who keeps giving.  And I count right along there with her.  Thanking him for the hard days too and that mama who lies under the bed covers asking for help, I thank God for her and her courage and gift as she teaches us how to be brave and ask for help, shows us how to receive.  I thank God for the cherry blossoms and their heavenly scent, the technology of medicine, the skill of surgeons, the dedication of medical staff, the shared journey and community. I thank God for carousels, for skype, for rainstorms, for hot tea, for chairs so comfortable they hold you and hug you.  I count the thousand more gifts of the God who keeps on giving.

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