Care

Taking part in Five Minute Friday over at Kate Motaung's page.  Click the link and join us.  Today we're writing for 5 minutes, unedited and without worry with a prompt word

CARE

I care about you.  I care about what happens to you, how your day goes, when you're happy and when you're sad.  I care when you tell me you're feeling a bit teary, and the news has got you down a bit.  I hear you rally and your spirits regain momentum as you say you'll get your fighting head on, that it hasn't got you beaten.  I feel the distance so incredibly deeply and I care that I'm not there.  I care that I can't see you face to face daily and share this with you there, instead of from here on distant shores.  You are brave, you are strong, you are an incredible inspiration to me.  I thank you for birthing me in to being and I care about this brilliant life.  I care about you.

for my mum

Because

It's Friday - so that means we're linking up with a flash mob of writers over at Kate Motaung's page to write for 5 minutes, unedited without use of the delete button or worry about it being just right.
Click on her name to join us :)

Because....

So I'm rubbing my eyes and my aching back and I'm wishing that I hadn't just stubbed my toe on the train track that is laid out on your bedroom floor.  I just stepped on another zillion pieces of lego and I'm kicking them out of the way.  I'm trying to extract myself from your bedroom that I came in to read a bedtime story 45 minutes ago and all I really want is to go downstairs and drink hot tea and drink in all the evening quiet.  But instead I'm holding a girl close and whispering what the day tomorrow will bring.  She asks, "what will we do tomorrow?" even though she full knows she's at school all day, then has a dance class that she loves.  Her big brother will swagger his way through the day - being on the cusp of teenage boyhood is no mean feat.  But she'll ask me anyway and brother will listen in.  Just because .... just because she is stretching out those last minutes of being together before the sun goes down on the day.  And I'm there in her room, then in his room to talk about the day and what tomorrow will bring.  Just because the aching back and stubbed toe and hot tea waiting can all wait.  Just because when the smell of sleep on their skin is beckoning and I feel warm breath close on my face, I'm in the glory moments and I stay, I linger, because there's no other place I'd rather be.

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.

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.

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.

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.

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.

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.

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.

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!

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

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.

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!

Stop

What Cancer Can Do........

I got a glimpse in to another friend's cancer journey this week.  It was unexpected, and it moved me and  made me think. A lot.  With a year consumed by this disease,  I can't help but think about cancer, but as my friend shared and what I'm learning is that perspective plays a huge part in how I think about and walk this journey.

I've read so many encouraging words about what cancer cannot do and some great and insightful things that have truly blessed and helped me.  Hearing these stories and reading these words is incredibly uplifting.  Today however, I wanted to share a slightly different perspective about what cancer can do.

What Cancer Can Do ......

• Give me the opportunity to form new, lasting and deep friendships which may otherwise never have happened.
• Give me a new appreciation of surgeons and medical teams who work tirelessly to save lives, heal and restore broken hearts and bodies and find new ways to tackle this disease.
• Bring a community together in support and solidarity for a cause.
• Gives me the privilege to share another person's insight and journey and with that comes the gift of incredible inspiration.
• Bring a deeper relationship with God.
• Makes me realize the "bad stuff" really isn't that bad at all.
• Helps me stop worrying about the "small stuff"
• Helps me pick up the phone, email, pause long enough to chat with friends.  The I'll do it later mentality gets replaced with, I'll do that now!
• Gives me a nudge and reminder to live in the moment, for the moment. Take pauses to notice the little things and grow a new appreciation of the marvel of the world.
• Makes me realize I'm truly blessed to be able to hold and hug my children each and every day.
• Give me a new innovative approach in getting children to eat.
• Heals rifts in relationships.
• Change perspective.
• Gives me a grateful heart.
• Gives me the opportunity to witness both friends and strangers in selfless acts of kindness
• Brings out the best in people

I have been thinking about this for a day or two and I think the list will be added to. What occurs to me is the grace, beautifully given by God and extended by others. Cancer can be a platform for so much of God's blessing with provision made and every need met.

So heartfelt thank you to those willing to share your journey with us.  As we unwrap the gifts this Christmas, once more I would like to extend my heartfelt gratitude to all who have helped us along the way.  Knowing how friends and strangers spend time praying us on our way, giving freely their time and resources to help during this year and this journey has been such a gift to us all. Thank you sincerely for taking the time to think and care about Jasmine on her journey and might we ask that you continue to pray for her and her continued strength and recovery in to the New Year.  Thank you!