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.






Friday, 14 March 2014

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!


Friday, 7 March 2014

Willing

We are joining Lisa-Jo Baker this morning for 5 minutes writing free, unedited, without worry if it's just right - just write!  The prompt today is 

Willing  - GO!

"I will willingly do that for you."  I hear the words strong and clear and want to jump in with both feet and say them. 

But these days I have an already overloaded schedule and I am coming to the realization that to be willing to do something costs me something.  
If I'm willing to do something it is normally at the expense of something else.  

But what I'm also learning is that I need to be discerning between choices then when I pause long enough to really think things through, to really take time to breathe and choose wisely, then my heart follows with a true willingness.

But it takes courage and love to be willing.  Because what's important is the willingness to be brave to accept things, to take the faith filled route, rather than the fear filled one.  And when my stubbornness and fear around change seems too big, the best thing I can remember is that we are not in control.  That the one who knows and is sovereign over all has all the answers and if I am only willing to trust, then my heart can be opened to life, love and adventure of the spirit.  And who wouldn't be willing to live a light filled life?

Stop

Wednesday, 8 January 2014

MRI - BRAVE


In a few weeks Jasmine will mark an anniversary.  I'm not sure it's one I want to celebrate but I need to mark it and remember it somehow.  It reminds me how far that little girl has come, that a heart still beats and a beautiful soul is vibrantly present.   At the beginning of March 2012, Jasmine became critically ill and was subsequently diagnosed with a brain tumour.  Odds were on that this brain tumour would be benign.  It wasn't.  So Jasmine's journey began and she underwent surgeries and treatments for cancer - the journey continues.  She's the bravest girl I know.

I have to get with that brave and put on my big girl pants tomorrow.  As the world sleeps Jasmine and I will hit the highway at 5am and head to Children's Hospital.  It's time for her follow up MRI scan and oncology appointments.  We know the routine by now.  She's had 4 or 5 a year since diagnosis.  The passage of time doesn't make this easier.  Should it?  I somehow believe it should.  That we should rest a little easier that she's doing so well, that she's getting back in to life, joining in going to friends' houses, learning violin, taking a dance class with friends this term.  From the outside her life echoes all the other 7 year old girls in her class.  I have to reconcile my thoughts to believing that on the inside her life echoes that of her peers too.  That these hospital visits are just peppered throughout the year to make sure she's staying well and cancer free.   Therein lies the problem.  There's no getting round the in-your-face fact that our "routine" appointments aren't routine for all the kids in her class.  It's not the regular scheduled dental check-up or eye appointment.  It's the fake bravado we put on to take our babies to the jolly old day out at the Children's Hospital. Where the staff wear big smiles with their scooby-doo shirts, the walls have toys, painted cartoon characters and stars, and there are game stations enough to go round and tv's showing back-to-back treehouse.  The parents pretend it's all just fine, and we nod and smile and say "fine" when asked how we are.  But our nerves are stretched to a fine thread and our insides are a jumble of knots and we hold our breath, hoping, praying and hoping and praying some more that somehow God's grace will reveal that the scan will show absolutely nothing.  Yep - those big girl pants most definitely a necessity.  I breathe and think - Brave.  My girl is brave.  Be brave.  Just be brave.  I wish I could wear brave like an armour, so that the frights would all be deflected, but it's more just like a bullet proof vest.... if or when the shot comes, it might be deflected and you'll feel the punch; on the other hand, it might just miss the vest and hit home anyway.

Just before Christmas, cancer took a friend of my husbands, a wife and mom to two young boys, just after Christmas, another child in our support group. This week I talked to my own mum, on her own cancer journey, and just been told there is nothing more they can do for her.  She'll be well looked after, of course, but sorry, our best efforts failed and she should crack on and make a list of things she wants to do and do them while she's feeling well enough.  She's on the other side of the Atlantic and I have to get up each morning and put on my brave, accept there's no money to get on a plane again and go and spend time with my family there.  The ache is something I never anticipated feeling.  We chat on the phone and she asks how I am and says she's fine - BRAVE.  And I want God to stop time, just for a while, so I can get away from I don't even know what.  But have time to breathe in life, and love, and the people that matter to me.

I watched a show recently about climbing "the Chief" - it's a local massive granite mountain with sheer cliff faces.  Tough to hike, really tough to climb and hadn't been done until the 60's and only with recent regularity from the 1980's.  It showed a clip of one "brave" man free climbing part of it, no ropes or harness.  And I watched from behind a cushion feeling stressed and afraid.  I was kind of mad too to be honest!  Taking that kind of risk is just plain unnecessary!  And to dance with death that way, to take the risk, for the thrill - I just couldn't comprehend.  Some people have cancer march right up to them and whisk them up on the dance floor for that waltz, side stepping death, whirling in to it, then away from it's brink only to swoop back down there again without the pleasure of being asked.  I'm not a thrill seeker, I don't like surprises that much.  And I challenge that free climber to come spend a day in a Children's oncology ward and see how precious life is, and learn a little more about being brave.  Children shouldn't have a sense of their own mortality.
Do I want a life less ordinary?  I've learned that the simple, everyday things are those to be thankful for.  That a life full of ordinaries can never be ordinary because a life is a miracle, a gift - exactly as it is.  I'll take ordinary every time thanks. So as my girl heads in to her MRI day, I'll be the one nodding, smiling, talking to another parent, hoping, praying, hoping and praying some more and faking that brave while the real heroes in children's sizes show me how it's done.






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.