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.

Remember

Linking up with Lisa-Jo Baker for Five Minute Friday today.    So often the word prompt is so in tune with something heartfelt for me and this week's prompt is "remember"

My husband's birthday is today, and this time last year heralded a very different set of circumstances.  A place I never wanted to be, and never want to go again, and would never wish on anyone.  Far too often a parent may hear the words "your child has a mass in the brain"
That mass became a cancer diagnosis for my precious and brave girl.  A year on, I can't help but be filled with gratitude for a daughter with me here today, a family intact.  It's a journey travelled and we walk it  every - single - day.
A year on stirs so many memories for me in so many ways but today I'm sharing a blog post I wrote last year as a tribute to the bravery of my daughter who fought so courageously and today is my walking miracle and reminder of God's good grace and the simple truth that for very purpose under heaven there is a season, a time for all things.  So shine brave Jasmine and be all that you can be!

Please take 5 minutes to remember with me :-

http://mckimmet.blogspot.ca/2012/05/why-i-wear-mascara-on-mondays-0-false.html

Home

I'm linking up with Lisa-Jo Baker today to take part in Five Minute Friday where we write for five minutes without worrying whether it's just right - we just write.

Today's prompt is:

Home

I walked from the aeroplane with a slight spring in my step, despite the 10 hours I'd spent flying and 3 hour transfers, despite the somewhat sad circumstances that had brought me here.  I felt the urge to rush, to plant feet firmly on solid ground, the solid ground of home.

Three weeks spent in my homeland.   I'd forgotten the way it smelled.  I imagine it sometimes.   The mingling of sheep sheared grass common land that is all earthy when the sun shines.  With the dew on the bracken, the birdsong that is early.  The distance heralds the waves lapping or sometimes just the heavens above and the beauty held in my eye.

I call Canada home now, but it is England that holds my heart.  I stood at the water's edge and breathed it all in, the rich hues of greens and browns, this still liquid waiting for a breath to stir it in to life before me.  No oar, no bird, no breeze to waken it that day.  I stood shoulder to shoulder with my sister, and knew all at once that only contentment that comes when we feel at home and it gladdened my heart.

Tears and Fears

I've just kissed my husband and children goodbye for almost 3 weeks as I write this.  I held them close in the airport lounge and tried to breathe them all in - to take them with me.  Perhaps I will feel the separation anxiety more keenly than them this time.  Another path filled with emotion lies before me.
I am sitting in Vancouver International Airport waiting for a flight that gets me on the distant shores of home tomorrow sometime.  I haven't stepped foot on English soil for over 6 years.  Part of me wants to jump for joy at the thought of embracing loved ones, seeing the old country, visiting an old favourite haunt or two.  And it's a big part that wants to jump for joy.



Yet I feel broken hearted.  I'm leaving precious cargo in Canada, and whilst I am gone, Jasmine will have a really big day.  She has another appointment filled day coming at Children's Hospital.  She will have audiology tests, bloodwork, endocrinology tests, consultation with oncologists and neurosurgeon. And right in the middle of that day is the next MRI.  That photograph like no other, where Rick and I hold our breath, pray and hope for a clear scan.  The only photo that really matters what the outcome is.

Jasmine's team said that we all breathe a little easier with the more time that passes.  I don't know that I do breathe a little easier.  I think perhaps I feel more anxious about this one than any other so far.  When I read about ependymoma two words haunt me - "frequently reoccurs"
They are the stuff of nightmares and all that emotion and pain is wrapped up in a day that involves a scan of a beautiful girl's brain.  There is nothing to suggest that Jasmine isn't doing well - only my own mind, memories of the journey so far, the weight of the cancer cart.  I think it is a mother's job to care and worry about her children.

And my mum worries and thinks about my sister and I as we embark on her journey with her.  There was a wrenching in my heart and I feel torn in two between mother and daughter at this time.  I'm trusting all is well with Jasmine, and that Rick can do that hospital day and brave it out for her, for him, for us.  I will think of her while I hold my mum's hand.  She embarks on her own perilous journey today with intense chemo treatment.  At Jasmine's last clear MRI report, my mum was receiving the news that she had an acute form of leukaemia.  Just 4 short months later, she is being admitted to hospital and has the hardest thing she has ever done before her over these next few weeks.  She is brave and courageous and I'm not sure I could do this as well as she.  So I will go and walk a few steps with her and hold her hand and pray her along the way.  I'll stand shoulder to shoulder with a sister and we'll do what we can together.


I have cried a river and I have felt fear lurking so much it overtakes me and more tears are shed.  But there's a time for those tears and a time to collect myself and continue.  Even if God has you on the right road, if you stay still you'll never get to your intended destination.  So I know it's time to move forward again, lean in, pray and trust God's goodness and grace.  Just keep going in spite of the tears and fears and just believe.


I have a slogan on my facebook page that reads "some people never get to meet their hero, I gave birth to mine." I can now add that my hero gave birth to me.  So I'm the generation sandwiched between my two heroes.  But as I look at my brave son, my husband holding the fort, my sister caring for our family, my aunty loving and looking after two sisters in need,  the teacher helping a child, the friend caring for my children, the stranger collecting litter from the street, the policeman keeping the peace, the schoolgirl sharing her snack, the teenager teaching his kid brother to play guitar - maybe, just maybe there is a bit of a hero in all of us.

Again

I'm linking up with Lisa-Jo Baker for another 5 minute Friday.  What does your "again" look like today?

I put the kettle on again, make a cup of tea again, pack the lunches, wash the clothes, sweep the floors, make the dinner again.  The agains roll in to days of same and much of the time is taken without thinking about all these agains that make up the minutes.

Then there is a looming MRI again.  We will wake at 5am and she will eat or drink nothing and we will arrive at hospital for audiology, MRI, endocrinology and oncology.  Again.  

I love that most days, these days, her line up of her day doesn't read like that, we have breakfast again, school bell again, reading, recess, math, dance, play dates again.

And I can hold her and hug her and tell her I love her again and again and again and let all these days keep coming.

Today though, I'll spare a thought and say a prayer for those mums who are waking up to a dose of radiation again, to a chemo infusion again, to a morning trying to get 15 pills in to their child again, to a blood transfusion again, to a surgery again.

You and your child are brave and strong and courageous and you inspire me and I think about you, again, this day.


It's another 4 minutes but please take a moment to see a video of some of these brave children.   We met Campbell whilst in Boston when Jasmine was having proton radiation.  He is an awesome little guy and his mom is amazing.  This is a video of him and some of his friends....

http://vimeo.com/57321267

Cherished

Linking up with Lisa-Jo Baker this morning for another 5 minute Friday.  We write unedited for five minutes without worry about whether it's just right, we just write.  Today's prompt is

Cherished

My friend and I strolled by the sea sipping our coffee.  I remember that day clearly, though it was almost 20 years ago - the sun shone bright, and so was her voice.  Bright, but brittle.  And as the waves rolled in, her story poured out of her somewhat new relationship and a stream of concerns she had.  There wasn't anything particularly wrong and she was struggling to pinpoint what it was about him or the relationship that concerned her.
My friend was stunningly beautiful, both outside and inside but coming from a wounded place, had no idea of that beauty.
I listened a long time to what she said, then quietly said, "well it seems to me, he just doesn't cherish you."
There was a pause, then a sigh, then she responded with humility, "You're right.  You're absolutely right.  Man!  I so want to be cherished!"
Both of us sat quietly thinking about that one.
I'm raising a son and a daughter now and what will I teach them?  I have to teach my daughter that her longing to be cherished comes from a maker who already knows her worth and cherishes and treasures her.  I need to teach her that she's right to want to be cherished, that she's worthy.  Because I think women have the tendency to perhaps feel somehow less worthy when things aren't right in their relationships - that somehow it's down to them and something they did or didn't do, or should or shouldn't do.  It's their fault, while all the time their heart begs, please treasure me, cherish me.
I have to teach her well.
My son - it's tough.  He already says he wants to not grow up.  The weight of responsibility a worthy man carries is huge.  They are really big shoes to step in to.  He will wonder what is the right job, the right school or university, the right town to live, the right choice to make, the right friends to have, the right girl to marry.  And maybe rather than coaching him on making the right choices, I will instead help him focus on becoming the right man.

Opportunity

Kicking of the New Year with a five minute Friday with Lisa-Jo Baker.  Join the community where we write unedited for 5 minutes with no pressure whether it's just right, we just write.

Go-

Opportunity

Note to self -

I'd like to take the opportunity to start this New Year by reminding you of some things.  Before too long you will get swept up in the to do lists, and the work pressures, the endless running round after children and their activities, managing the house, being a mum and all the other life stuff that you do.

I'm taking the opportunity now to remind you to pause in all of that.  To slow down, to notice and to take part.  You can lose the mask of perfection and know that you are amazing.  You are already enough.  Did you get that?  You are fearfully and marvellously and wonderfully made and in you there are a unique combination of qualities that you bring to this world.  God has you placed right where you ought to be and where you make a difference to many.  So maybe wiping a sticky counter and sweeping the floor, wiping a nose, changing a bed, making dinner may not seem such big life things.  But they are big life things and they are seen and you make a difference.  There is One who sees it all.  You are precious beyond belief and you are stronger than you know.  You will have trials this year but remember it isn't all bad - look for the good and you will find it.  Dream big and rest a while in that peace that comes.  Take it one day at a time and don't worry about the future or what has happened, live in the moment one day at at time. for that is where you'll find the gifts and where the yoke is easy and the burden is light.

Go take a big leap in to life this year!  You are an amazing woman!

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