Grey for May

May rolls round and it’s incredible.  Everywhere I look there is new life, growth and such stunning displays of colour and beauty that it can take my breath away. 

May also marks the start of brain tumour awareness month and the colour for this is grey.  It seems at such odds with the splashes of bright shades I see in the magnolias in full bloom, rhododendrons, cherry blossom, tulips and an abundance of green shooting everywhere. 

But when my five-year-old daughter was diagnosed with a brain tumour everything in my world turned grey, so actually, for me, it is the most fitting colour.  That was fourteen years ago, and I am one of the immensely lucky parents who can say this year, I get to celebrate her twentieth birthday with her, and she still has breath in her body.  I don’t have to mark the years like all too many other parents who are faced with a heavenly birthday sliding in through the night to mark another year of loss.

The first tangible experience of a brain tumour for me was insight and knowledge through a pastor at a local church.  She would share how she was visiting an eighteen-year-old girl in hospital with a brain tumour, and how she was dying so bravely. 

So, when Jasmine became ill and I heard the words brain tumour, I crumbled as I felt those doctors were handing her a death sentence, and this was way before we even got to pathology and cancer entered the playing field.

A brain tumour diagnosis is a grim pill to swallow.  I was lucky.  The care Jasmine received in that children’s hospital extended to me, and I will be forever grateful for Dr. Cochrane, who sat by my side prior to that surgery after the most gruelling night of my life when that tumour was bleeding in her brain.  But he spoke kindly, compassionately, and factually about the surgery he was about to perform on my baby girl.  He didn’t mince his words, and he didn’t leave anything out.  He laid out the bleak picture of what he needed to do, and the massive risk involved.  If she survived the surgery, and it was a big if, he told me about the effects that it could have; that she may not be able to swallow, she may have reflux difficulties, she may have breathing difficulties, incontinence, suffer extensive brain damage, have physical disabilities that could affect movements like walking, co-ordination, balance.  She may be mute. 

It sounds horrific in a list like that, but after that night I’d had when her tumour was bleeding, and causing such swelling in her brain, if I’d had a scalpel in my hand, I’d have cut that tumour out myself, having witnessed pain in my baby girl I’ve never seen the like of before.

That hospital ward was frantic around us that morning and a technician almost ran into that room and said heatedly that, “we’re ready to go now!” and Dr. Cochrane simply said “no.”

And that technician said, “but we’re ready now, we need to go now,” and again, that remarkable surgeon replied very measuredly, “we’re not ready.”

And I looked in that man’s eyes as he waited for me to process everything that he’d just told me, giving me a moment’s grace to breathe as I realised he was asking me to let go of my daughter.  He was telling me she may not survive, but either way, he was allowing me time to say a goodbye to my daughter before I handed her to his care. It was looking at that incredibly skilled, but incredibly human and kind man that I realised that a brain tumour diagnosis completely changes a person’s life.  We do have to say a goodbye and life is divided now, before and after diagnosis.

It was me in the end who said, “ready,” and that one word closed one chapter of my life and started a radically different story.

So, its brain tumour awareness month, and what do we really want the world to be aware of?  I don’t know the answer to this.  I can only talk about what my own knowledge and experiences have been, and actually, it isn’t even really my story, it’s my daughters.

But what I’ve learned is this.  A brain tumour diagnosis can be manageable or catastrophic.  It may mean one surgery or multiple surgeries.  It may mean cancer, or not.  It might mean things you could do before, no longer factor in your life.  It might mean that people you thought you could count on melt away, or there may be new people that come into your life that become hard and fast friends in the lifelong way.  It may mean you live with fear like you’ve never experienced, or that you see simple things round you in an intensely bright new light and can take joy in them and just be plain grateful.  It might mean there’s lots of information and medical advice about the tumour, or there might be precious little known about it.  That tumour might be removed and stay away, or it might grow back at twice the speed and be twice the size as the first one discovered.  It might mean… it might mean…. It might mean…. this list could go on and on and on.

And those simple pleasures, like having a hot cup of tea, smelling freshly cut grass and having the capacity to cry and feel your heart break are all actually gifts, because it means I’m still upright and able to experience a slice of life.  Only one day is given, and nothing is a given, because one day is all any of us have.

I think about that eighteen-year-old girl whom the pastor spoke of and what does it mean to die bravely I wonder?  I don’t know if I have the strength of character to die bravely.  And to be honest, I don’t even know if I have the strength of character to live bravely most of the time.

I have worn a silver bracelet for a lot of years that has the word “brave” on it to remind me how brave my baby girl was, along with all the children we met on her cancer journey and recovery from brain tumour diagnosis.  I need the reminder because the recovery isn’t linear, side effects shift boundaries and evolve, and I have to get my brave on more times than I ever thought I would have to in this life.  There are still peaks and troughs. There are triumphs and sorrows, and I realise life has a habit of ebbing and flowing for everyone, whatever season you find yourself in.   People have hard things going on, all the time. 

Another bracelet has recently been added to that one, and this one was given to remind me of how strong I am.  I don’t feel strong, and I fake it much of the time, but these things visual, tangible, and real on my wrist remind me that I have strength enough to just keep taking the next step. And that’s all I have to do, just one step, in the next moment.  And all the moments join up into days, and then months and then years of this great big adventure of life I’m living.  I feel grateful.

And whilst we’re doing that, the doctors, scientists, the fundraisers, radiographers, chemists, biologists and every single unspoken hero and underdog who is part of the clockwork that makes the world of medicine tick can continue on with doing what they do to ensure that more knowledge grows, treatments get better, more help is given and more lives are saved when this diagnosis comes along.    

Behind all of this though are the ordinary people, the people like you and me.  The people who put £1, £20 or 50p in a collection bucket.  The people who buy a ribbon.  The people who extend grace to the others we see in our communities wearing a sunflower lanyard to signal they live with a hidden disability.  The people who offer kind words of support to friends, or strangers, who are on this walk.  The people who give a moment of their time to another, or deliver a meal, give someone a ride to an appointment, run an errand, provide a box of tissues or just a safe space to rest for a while.  And finally, the people taking the time to read this, please know you have an immense impact on the people like me, who are part of a club we never wanted to join, those of us touched by a brain tumour diagnosis.

 

 

Dear Lisa

It's May.  I've posted photos my Facebook page and they're greyscale, because it's Brain Tumour Awareness month and the colour is grey.  I look at the photos of the scenary I love and call home, and the children I love and hold precious with the colour drained out of them and think how fitting it is. When my child was diagnosed with a malignant brain tumour all the colour left my world.  But it is 5 years ago now.... and that is cause indeed for celebration.  They have been gruelling years and I wish I could go and whisper in my ear some things I've learned along the way.... for this is what I'd tell myself.

My dearest Lisa,
Your world is about to change.  You are going to get up one morning and everything will be normal, but it is never going to be normal again.  Your baby girl is going to look so small and fragile and you will have to endure the longest night watching her life ebb away.  There will be discussions about harvesting her organs and you will scream silently and vomit in the sink.  You will pray, beg and try and make all kinds of deal with God to take you in her place and you are going to feel like you are disconnected from your body, mind and soul.  You are going to be forever changed by this event.
But know this, Lisa.  She is going to survive that night.  She is going to survive the 8 hour surgery to remove that tumour and she is going to get through the months of cancer treatment that lie in front of you.
Breathe.  Keep breathing. You are going to have travel out of country for treatment and you are going to crumble.  But during this time you are going to meet some people and they are going to become the lifelong friend kind of people.  Your stories are now interwoven and you will be forever grateful that it was exactly these people that you met during those times.  You will take your girl and they will fill her body with drugs and her brain with radiation and one day you will be overcome with it all and collapse on the corridor floor leaving the radiation room.   You will be picked up and carried by a man to a sofa who will hold you for 5 mins and just let you cry in his arms. The kindness of strangers is great indeed. You'll then panic about your son but he'll tell you it's all taken care of.  And after a while he'll carry on his day and you'll carry on yours and there will be many moments like this.
There will be a barrage of mascara Mondays and 5 years on, you will allow a smile to play on your lips when you stand in front of the makeup counter looking for non-waterproof mascara.  You know how  the woman shopping beside you is just looking for mascara, but to you, its brave in a bottle.
You will yearn for your home and your family.  Know this - you will get there.  You will get your hearts desire and make that change.  You will get there.

such an innocent sounding word

I came across this post that I'd composed some years back recently and it was a timely reminder to stay grounded and grateful.   The skin checks continue - I had to have another part of my skin removed this year - from my face.  The doctor told me it would leave a scar, then he had commented how pragmatic I was being which he found refreshing - we didn't linger long on the scar side of the conversation.  I wasn't too bothered about that.  I am covered in scars and they map out the journey of the road travelled thus far.  They may not look pretty but they tell the story of my life.  Some due to accidents, some due to cancer, some due to harm caused, and others like the scars on the inside tell the story of the salmon girl years.  I did end up having to have treatment for melanoma after I'd written that post, but the sentiment still remains the same. 

I now sport a rather fetching Indiana Jones style scar on my face just below my lip and it doesn't distress me - it reminds me how lucky and blessed I am that in this day, this moment, I am healthy and its good to be alive. 

2012

Melanoma.  The word doesn't sound threatening, it doesn't sound as though it could turn your world upside down.  It doesn't sound terminal.  It doesn't sound malignant.  When I was told I have malignant melanoma, though I knew what that meant, it didn't fill me with the same level as panic as when the Doctor started saying cancer.
That was 2 years ago, and I was fortunate.  It was caught early and I had a wedge of flesh cut out of my body, and all the disease with it.  Given an all-clear and told to come back to see the Dermatologist every 6 months.  So every 6 months, off I go to the Dermatologist, who looks at my pushing 40 year old naked body, under bright lights and with a magnifying glass.  Lady Godiva I may not be and I wonder what runs through his mind - is all flesh just a slab of meat?  I don't have a gym toned body - instead it wears the evidence of giving birth twice, eating one too many pieces of chocolate and not dog walking 3 times a week as swiftly as I should.  It also now bares many more scars - removals of more "tissue" that is unhealthy.  And the waiting continues over and over again.  I am cut, the skin gets sent to pathology and the results come in.  Then sometimes I am cut again with a wider excision, sometimes I am told - yes this mole or area is changing and they are pre-cancerous cells, sometimes they are dyspraxic and sometimes it is the innocent sounding melanoma.    I have multiple scars on my feet, my back, my arms, my neck and chunks of me have been examined under a microscope because they're unhealthy.  This isn't supposed to happen.  I thought I would have one isolated incident.  My children are 8 years and 5 years and most days I feel so lucky and blessed.  I am well looked after by these medics.  They find these diseased cells early enough that I only have to have skin removed by surgery.  I don't have to have skin and body poisoned by radio or chemotherapy.  Yet.  Some days I think I will live to see my children all grown up.  And some days I think about the moles that they don't find.  My body is covered in freckles and moles.  What about the ones that might go unnoticed?  I'll be honest.  Some of the ones that I thought were fine, have been unhealthy, so how's a girl to know?  We don't know how much time we have.  Let it be a daily walk in gratitude, harmony and vitality.  This finite life on earth is short, even at 80 years its way shorter than we think.  There is a time to be born and a time to die, but the living - that part comes in between.  This gift of life is just out there waiting to be grabbed with both hands. How will you unwrap this gift today?

Resolutions

New Year’s Day comes with all its trappings.  Before long I will see a plethora of joggers in new looking lycra pounding the pavements and signs springing up everywhere for weight loss clubs.  Social media will fill my screen with adverts from the latest guru about how to declutter, cleanse, live my best life and succeed in my relationships and all resolutions to lose weight, get fit, live with intention and purpose.But what if you know you left 2022 truly giving it your best efforts and it was still an abysmal year, or peppered with sadness, hard things, and difficulties?  I won’t be making resolutions, because I’ll very likely fail at the first hurdle and why would I put that pressure on myself? Let’s face it, I still have a house full of chocolate and Christmas cake so that intention to shed a whole load of pounds isn’t happening this week.  If I am to go in to 2023 with any kind of resolution, it’s simply to set the goal to treat myself with kindness and a bit of compassion. I will tell myself at the stroke of midnight 2022, and today and tomorrow and the next, “job well done, girl.”  Because every day I wake up, show up, take part, and do anything, whether that’s hiking a fell, or having a cry in to my coffee, is in fact, living my best life.  So, it’s time to stop telling myself I need to improve, compete, have as tidy and beautiful a home as I see in the pages of magazines and all too frequently on the social media pages of friends.  It’s time I stop letting myself feel less than in some way.  It’s time I be my own best cheerleader and extend grace for my messy life that is definitely not Facebook neat, Instagram filtered perfect or measured by the number of likes on my status.  It is in the details, in the mud on my boots, in the pink petals on the cactus and the wag of that tail that knows how to live fully in the moment joyfully.  It’s at every turn, and this year I’ll endeavour to take it as it comes, the good stuff, the bad stuff and the downright ugly stuff – all of it, with no resolutions and no pressures on myself, just living simply and simply living the best life I can. 

Waiting with Wolves

She puts her arms round me and I collapse in to them.  I'm at my sisters to pick up my son and this day goes right up there with being one of the longest of my life.  I am drained right through.  We left for Manchester early with Jasmine all broken up on the inside.  Fear can do that to a girl.  She doesn't want to go, and neither do I.  We are heading for her MRI.  She is trying without sedation for the first time; it's a new hospital, new staff, new experience all round.  The thing she holds on to is that there is a needle involved and it darkens her world.  She's had broken sleep for 4 nights and hasn't eaten much for 2 days.  Anxiety building and it makes me feel all wrong inside.

We stop at motorway services and buy a Disney CD and try and lighten the mood singing Hakuna Matata but our hearts aren't really in it.  We're both faking it.  We get to the hospital and the first thing we're told is that we've been sent her letter in error - there isn't actually a slot for her to have an MRI that day.  They're already late.  We don't even know who her new oncologist is and who to send the images to when they're done.  It doesn't fill with me confidence and I feel sick, hoping and praying they won't ask us to come back a different day so she goes through this anxious build up again.  I feel it too.

Then they say they'll try and squeeze her in.  And we wait some more and Jas colours, we play cards, have a few rounds of hangman and her voice comes small when she asks when will it be.  An hour or two later,  I still can't answer then someone comes to tell us that Jas will be next.

She has created a picture on the way here for her new team.  It says "you're as brave as a wolf pack" and I draw strength from her positivity as we prepare.   She picks her music, gets comfortable and climbs on the stretcher that will roll her in to the MRI.  I'm holding my breath then when they put her head in the brace and we make it try to sound fun and cool and call her a storm trooper, I am slammed back to Boston and treatment days of her lying on a stretcher, still with her face in a cage ready for radiation to be pushed in to her to young body.  I want to throw up, but I smile and squeeze her hand and tell her she's awesome and brave and can totally do this.  She whispers she feels closed in and I say "I know babe," and try and reassure her thinking all the time, I don't know if I could do this.   It's loud and she jumps when it starts and I watch her chest rise and fall rapidly and just hold on and pray that she can somehow feel OK and get through it.  A few minutes in and I see her lip quivering and she's trying to hold it together and I'm right there with her, but right there in that room, with her hand white knuckling mine my heart is broken right open and I'm just plain devastated that my girl has to keep on walking this cancer journey.

She knows the worst is yet to come.  The second part of the scan they do with IV contrast.  She climbs off the table and wants a break and then sobs in my arms and I just hold her and she keeps asking, "when will it be?"  Another 20 minutes of waiting and build-up and then they're here to access her.  It isn't pretty and I hold her in a vice grip and as her tears and screams flow out of her, the life flows out of me and I just don't want her to go through this anymore.  I don't want her to have to have blood tests, IV's, checks, scans, consults, evaluations.  I don't want her to have had cancer.

Coming home we pass a coach tour bus.  It's the firm my mum used to go on tours with and suddenly my soul seems to vaporize and I'm hit afresh with grief and loss and I miss my mum.  When I tell Sarah she says it's just mum letting you know she was with you and I like that, but at the same time there's an ache, because she's not with me, is she? Sarah holds me and I say,  I just wish Beanie didn't have to go through it and I cry my heart out for her childhood filled with this ick that is cancer.  I cry for Finn with his endless days of being delivered to someone else for the day when I can't look after him. For all she's endured and it keeps right on coming.  How does she do all that and keep right on feeding the right wolf?  How does she just keep going?  I hold her that evening and when she's all snuggled in with bunny and her blanket I wonder at the miracle that she is, that the person that she is becoming.  I'll wait now.  Wait for the scan results, for the appointment for the consult with her new oncologist and I'll breathe and believe the scan is going to be clear and keep on being clear and keep on believing. And while I'm waiting, I'll thank God for this girl who inspires me every day.

The Right Wolf

"You can take a road that gets you to the stars. I can take a road that will see me through."  
Nick Drake

"Well, I'm glad you're still here," she says.  And just like that, she pours out the love and dispenses salted caramel chocolate biscotti - always.  I'm always glad to have spent time in her company and we talk, we laugh, we pray and sometimes we cry.  She offers me acceptance, pure and simple and in this moment, I am glad I am still here too.



Sometimes it feels like waiting is all I've known in recent years. There's been a lot of waiting with Jasmine.  Waiting for hospital appointment cards, waiting for surgery instructions, waiting for treatment plans, waiting in hospital corridors and too small windowless rooms.  Waiting for scans, for results.  And the wait and see if she's grown, if the cancer's come back - or not.

We talk about how everything happens for a reason, how everything happens in God's time, how there is a plan and if it's meant to be, it happens.  If it's not, it's because it's not time yet, or it simply isn't meant to be.  I wonder if there really is a reason for everything and I'm not sure there is, not sure there isn't.  I think sometimes things just are the way they are.  I don't ask "why" too much because some things I just never am going to know the answer to and I could drive myself crazy trying to understand.  I simply don't understand why children get cancer, and die, every single day.

Finn, Jas and I stretch out our bare toes together in front of us and cuddle up for movie night.  We make popcorn, we throw a blanket over us and we talk about feeding the right wolf.   We embraced this wolf thing after watching Tomorrowland.

So when she finds me and she can't put reason to what troubles her and there are no words for what she doesn't understand but the pain of it threatens to engulf her; when she finds me and her voice is small and she snuggles in and whispers "the wrong wolf is winning."  In that instant she doesn't need to say anymore and I can hold her in it for a time, then together we'll chase the wolf away and give victory back to the right wolf.   Finn can ask me, "which wolf is winning today?" and it grounds me to think about what I'm grateful for and there is always, always something to be grateful for.

We are living a snapshot of life that isn't the most comfortable, easy or happy.  It's broken pieces all laid out in front of me and like a jigsaw puzzle, some pieces fit when you try them and some don't.   Some pieces I just have to wait to rebuild and that friend and I try and figure out what it is I'm supposed to be doing, learning, and living in this waiting time.

As I rest in that friends company who says I'm glad you're still here, we crunch on our biscotti, sip the coffee and I'm grateful that she's right here with me taking the road that will see me through and learning to wait well.

Gold

It’s 1^st September and today I will wake up and put my brave on.  I will get dressed, I will walk my dog and I will drink coffee and I will wear gold.

I will take my daughter to meet her Grandmother and revel in the life that she breathes in to her bones and be grateful that she is on her way to a pool party with her brother, family and friends.  The clouds can gather, the rain can come and I will be grateful, just plain grateful.

I will meet my friend and we’ll talk and we’ll laugh and we’ll cry a little.   When that small girl, she’s not so small anymore, puts her hand in mine and it’s warm and my heart fills, I will think about how some days it still catches me unawares and can feel as raw as the day they told me she had a mass in her brain.    I will never tire of looking at her in this day. I will never stop thanking God for the marvel that she is.  Twinned with that, I will never stop feeling the pain of what she has endured.   How helpless a mother can feel, as she’s unable to take away the harrowing ordeal that her daughter has lived through in her short life. 

This summer we have lived large.  We have embraced life and we have laughed.   With hospital appointments looming for Jasmine, I choose to and fully believe her good health and recovery will continue.  I will believe for cure for her and for every child and parent that is faced with a cancer diagnosis.   I know what it is to walk that path, and keep on taking the next step.  The mascara Mondays come, and they come more often than I’d want.  But because she’s the bravest person I know, she inspires me to put my brave on and step out boldly in belief. 

I’ll wear gold this month, for my girl, for your girl, for your boy, for your brother, your sister, your son, your daughter, your grandson, your granddaughter, your nephew, your niece.  I’ll wear gold for the ones who earned their angel wings and I’ll honour their bravery and their lives. I’ll wear gold for the children in treatment this day, for the ones who were treated 5 years ago, and the ones who were treated 15 years ago.  And I’ll get my brave on and I’ll keep right on believing this day, this month, this year and every one that comes after.

Jasmine's Journey

It's stifling hot right now.  The temperature sores and my energy gets zapped by mid-afternooon and all I want is another cold drink and a nap.  Instead, I'm running round getting packed up for a camp trip.  It's the first of the year for the children and me and usually we have already been at least once.  We're late starters.  There seems to have been a packed calendar with activities for both the children and me.  It tells of a normal healthy and busy family life.  I like it.

There are still the days marked on the calendar that say BCCH - Jasmine appt.  They are scattered throughout the months and we just spent a marathon day there on Monday.  Jasmine had her neuropsychological evaluation.  She spent 4 sessions with a psychologist and assistant with some breaks in between having her knowledge and abilities tested.  In reality though, she's being assessed to see if there's damage from brain surgery and radiation treatment.

She loves the day.  She enjoys the "games" she gets to play.  She is quiet though and the doctor asks me if she's anxious.  Of course she's anxious.  Every time I set foot in the place I am transported to another realm of feelings.  I can't describe them.  It's hollow, it's empty, it's grief, it's relief, it's elation, it's horror, it's gratitude, it's survival, it's love, it's dark, it's light and it's all rolled in to one and there's no harnessing it or controlling it.  I can be perfectly fine but then it hits you from left field on a Wednesday afternoon at 4pm...... I never see it coming.   So is she anxious?  No shit Sherlock! No doubt there's something in there that gets stirred up for her when she goes, even if it isn't a needle phobic MRI day.  It's just the cancer journey.

"She has performed incredibly well!"  I am told.  And I break out in a huge smile.  We chat some more and I hear about how academically able she is.  Then I hear about the "areas of concern."  That though her brain is incredibly able, she has some damage to the neurological pathways that control the execution of tasks - whatever that may mean.  In short, she takes longer to do some things and sometimes memory plays a part.  She may need support in school in the coming years.  My emotions get stirred up again, and I'm awash with gratitude that she's alive, doing well, that her recovery is being tracked so she can get all the help she needs and that today she has no evidence of cancer in her body.  Then I'm suddenly feeling heartbroken and angry that she needs support because of the damage cancer and treatment has done to her body and brain.  Then suddenly I'm feeling glad because she had proton radiation therapy in place of radiation and "it really saves the brain."  Then I'm fiercely pissed off that her brain needs saving and she had to have radiation in the first place.  It's a jumble of feelings and I feel I don't know what - it's just that mixed up place that parenting a child with cancer is.

Last night that bright and beautiful girl ventured downstairs to tell me that she was feeling sick.  She was clammy and though the fan was on it was stiflingly hot in her room.  I asked if she wanted to sit with me for a while, but she said she was tired so could she go to her room and could I go with her.  After I re-opened all the windows - she'd closed them as had heard a story that a tarantula had escaped from Science World and no way was that spider climbing in her window - I cooled her with a cloth and tried to soothe away the worries.  Inside I was laughing my head off and loving her character and the fantastic and interesting person she is and will become.  I prayed for God to hold her and help her.  I watched her looking all clammy with her brow furrowed and her eyes glazed over as she was slipping in to sleep.  From nowhere,  I was suddenly transported to the night she was admitted to hospital.  She looked the same.  Last night I watched wanting her to close her eyes and find rest and sleep and I couldn't help but silently cry a river of tears.  So different to watching that expression and wanting her to open her eyes, keep opening her eyes so I knew she was still with me and had not yet left this world.  The ache and sorrow is as raw and fresh as it was that night.  I don't know if it heals with time or is just what I will carry forever.  How can I make sense of all this?  Sometimes I think I must be going insane and that I must be the only person who feels like this - and surely as she's doing so well, I should be absolutely fine.  Most of the time I am but those triggers come and I don't always see them ahead to prepare for them.  And I wouldn't even begin to know how to prepare for them anyway.  Does anyone?

So Jasmine's Journey is this shared journey for our family.  Each of us traversing the inclines and rough terrain as best we can, loving the smooth sailing and free falling of the better days.  Life is a little like that for all.  I'm learning that the best I can do is just keep putting one foot in front of the other and take the terrain as it comes, living in that moment alone with whatever it brings for my girl and me.

Firsts

There is that old saying about doing something that scares you every day.  Today I did something that really scared me.  It was something so simple, yet I had a fully physiological reaction to my nerves.  My palms were sweating, my stomach was a tight knot, I felt sick and I was visibly trembling.  Actually I was shaking.  I found myself either holding my breath or breathing rapidly and when I stood my knees were shaking so badly I thought I was going to fall over.   I was truly scared.

What was this great and frightening thing I undertook today you might ask?  I can admit to feeling a little embarassed to share for it was nothing greater than playing my first violin recital to a roomful of people.  There were about 10 of us in the program, and I was the oldest student there.  The youngest being around 4 years old and the oldest of the group except myself was probably 14 years old.  So the room was full of proud parents and grandparents, aunties and uncles there to see their children play.  With my situation, I was the parent - my children were the ones in the audience. 

I knew I was nervous but I was actually surprised at how this fear took effect physically over me.  I haven't felt that way since the day Jasmine was in surgery having her brain tumour removed.

So yes, it truly was taking part in something that scared me. I wonder why I was that scared?  When I really consider this I realize it is born out of insecurity.  For me, knowing that a roomful of people are all watching my every move, and listening to every note, whether I hit it perfectly or go terribly wrong is not something to be relished.  I can also recognise that an element of vanity plays in to this.  I am a woman the wrong side of 40, I have more pounds on my frame than I used to, more grey hairs, more dry skin, more creases round my eyes.  Having all eyes on me for the solid 3 or 4 minutes it takes to play the piece is also nerve-wracking.  A broken heart or two, rejection and trials can do this to a woman.

So how did I overcome all this panic?  I prayed before I left home.  I wore my "brave" bracelet and looked at that word before I got up there.  I wear it for Jasmine and when I'm feeling small and afraid it reminds me that despite how small she was, she had courage and bravery beyond her years to take on all that she did during treatment.  Before I began playing, I decided not to bluff my way through with false bravado.  I shared with the audience how nervous I was and asked for their grace.  I said if I played poorly it was in no way a reflection on my excellent teacher.

I can play this piece perfectly at home and it would appear I can play this piece passably in front of a room full of people.  I somehow got the notes out and began breathing again when that oh so kind audience cheered loudly for me at the close of the piece. 

I'm glad I did it, but I'm not sure I am in a hurry to do something else that scares me.  When I think about that saying, I don't think we get the opportunity most days to do something that gut wrenchingly scares us.  But with one scary event accomplished maybe I learn a little bit more about myself and the strength I actually have.  I learn a bit more about my character, what I can accomplish and where my limitations lie.  Taking on that challenge somehow empowers me to keep going and perhaps that parachute jump that Finn wants to take on isn't so out of the question after all.  But let's not get carried away.... we'll work up to that one and take on a bit of zip trekking first I'm thinking!

Follow

Joining Kate Motuang at "Heading Home" for Five Minute Friday, when we write for 5 minutes without worrying whether it's right, we just write.  Join us here :)

If I follow you, it means I have to have a measure of trust.  I have to place faith in that thing unseen.  I have to believe that you have my best interests at heart and will lead me safely through all this messy life.  I've followed before.  I've followed my impulsive nature, my hair-brained idea.  I've followed a man across the world, the latest "can't be missed" tv show and diet fad.  I've followed painstaking progress of loved ones recovering from cancer and I've followed journeys that end with them being called home. 

Following can leave a great big gap in my heart and soul.

So, if I follow you, it means I have to get a bit of my brave on.  I have to walk believing that the path I'm on is prepared and meant to be. .  I've learnt that my own nature will trip me up, but it's also the essence of who I am and it's OK.  There's a strength or two I'm building as well as recognizing the weaknesses.  I'm learning that the path I'm on can still be full of twists and turns, can be an uphill gruelling struggle, but the freewheeling downhill is such a blast.  I'll follow with the assurance that you fully know the way, like a weathered and worn map-book and as long as I lift my eyes and follow, I really can't lose my way. 

Break

Joining Kate for this week's Five Minute Friday.  The prompt is "Break"

I remember lots of people telling me.  The words would come.  "You really need a break."
I heard "you'll burn yourself out"  "you're doing too much"  "when do you get a break?"
But you see, I had to keep on going.  Because everything around was broken.  There was a time when it all just fell apart.  When life was so fragmented and broken that there seemed no possible way to put it all back together.  And there was no earthly way that it could all go back together, come together and work again.  Break?  It was broken.  All of it.
I didn't have any words to say to those people, who all spoke from a place of love, who could all see that burnout was just a breath away, that wanted to help me, love me, care for me.  I had no words to say and just kept on keeping on.
I'm so grateful that faith is a gift.  That we don't need energy for that.  That all we need to do is open our heart and our hand and receive.  And then the break comes.  Because when everything is broken and your heart rips wide apart.  When you have oozed every last drop of life from your broken body and you can still cling to hope. That's when you're broken.  And that's when the break comes.  It rises like the sun.  Faith rising and light, hope, courage and strength to keep taking the next step.  And the next one and they tumble into the minutes, hours, days, weeks and months.  And that's the break I take until one day, the broken doesn't feel so broken anymore.

Wait

And now we wait.  It's been 4 days since Jasmine had her MRI and it's 3 days until we go back to oncology and get the results.  This is the hard part.  We've never had to wait this long before.  We usually get to see Jasmine's oncologist on the day of the MRI, but that wasn't to be this time.  I thought I would be losing my mind, and earlier last week I was losing my mind.  I was fretful and anxious and the world felt all wrong.  Gearing up for an MRI stirs up the worst of memories for me.

I spent an evening with a friend and she stayed with me and has continued to pray for me and for Jasmine this week.  She texted me on the weekend, just checking in to see how I was doing and I told her OK, and that I was keeping myself busy and occupied.  And that great friend responded and her response made me smile in such a heartfelt way.  She said, "But Lisa..... didn't you want to just "be still?"

And it comes like a steady heartbeat.  The smile starts at my lips but winds it way right through my soul.  Because instead of spiralling in to panic and pain, heartache and heartbreak, living and re-living all the scary memories and the what ifs, that this kind of waiting creates.  Instead of all that, I'm sitting content and smiling, because yes I can be keeping busy, but I can be so very still.  Still in the mind, heart and soul, so I'm not on such a crazed treadmill of worry.  Still in the present and in peace.  Heart beating, patiently waiting, and following direction to just be still, and know what hope is.

Jasmine's Journey - 3 years

I put down the phone and I feel exhausted.  It's a mid-week afternoon, the same as any other.  I'm sipping tea and folding laundry and there are paints on the counter with artwork from small hands drying all around.  Ten minutes earlier I didn't have this butterfly feeling.  The phone rang and the long-term follow up receptionist tells me that Jasmine has an audiology appointment coming up.  And that's just fine.  Jasmine likes going to audiology.  It's a game and she likes to play it.  Then she says we'll see Dr. Hukin in the afternoon.  And from nowhere we're back in the realms of oncology.  "Oh and endocrinology is coming up," she adds.  Then almost talking to herself she says, "wait, that won't work, because you'll need to see Dr. Hukin after the MRI and that isn't scheduled for a couple of weeks."  Then suddenly I'm holding my breath because somehow the whole MRI thing wasn't on my radar yet.  I hadn't been thinking of it - which is a good thing.  But I guess I usually start thinking about it round about the due date and suddenly here we are, and we've leapt from the everything's fine audiology to the everything's not so fine MRI scenario.
We are coming up on 3 years out from diagnosis for Jasmine.  It's a really big deal.  But it never ceases to amaze me how sometimes it's as though no time has passed at all, and the tears will prick the back of my eyelids and I'll blink them away.  And it grieves me because something as ordinary as an MRI scan can make me feel like I'm losing her - all, over, again.

Thursday morning I will go to work, and Jasmine will travel with her Dad to the hospital for her MRI.  I don't know if it's worse to go, or not to go.  It's really a day of anxiety which ever way you cut it.  I will take Finn to school and we'll carry on with the normal stuff that days are made of.  While I do that, a picture will be built on a screen and my baby girl will lie in that machine and I will want to hold her - just hold her.
The rest of the day passes and then I cry in the shower.  It's where we cry so our children won't see then we paint the smile and the "mum face" back on for bedtime routine and I tell Jas she is off to audiology this week.  Big smiles - she loves her audiology appointment.  I start to wonder when to mention the MRI to her.  We have learned that too soon and the anxiety for her builds.  Too late and the meltdown and panic about it overwhelms her.  I still haven't got it right.  Then the decision is taken from me as the hospital calls and she overhears my side of the conversation.
"Do I have an MRI soon?"  she asks.  And I reply soon, but don't say when.  She's not satisfied with that and asks "when" over and over.  I tell her it's at the end of the month.  And she still isn't satisfied. What date?  What day?  Until finally she knows.    A while later she wants to know who will take her.    A while later still, she appears from upstairs long after bedtime with tears.  I pull her on to my lap and hold her and ask what's troubling her.
MRI
But here's the remarkable thing.  The only part of the MRI that troubles her is the IV.  Three months of surgery and treatment and a following 3 years of maintenance appointments have left her needle phobic.  And I smile to myself at this wonder girl who worries about the scratch of a needle, while I worry about a silver shadow on a screen.  She is amazing.  And I reassure her no needles.  We'll use the mask, she'll be asleep when they remove the IV.  She won't feel a thing.  She is reassured and goes back to bed.
I think about all Jasmine has endured on her journey.  How cancer came to our home and ripped our lives and family apart.  How we have grieved.  How we have prayed and hoped.  How we have watched while treatment has broken her body, then watched as she made slow progress recovering. I think about the anxiety that comes with every appointment, the fear that this disease will come and wreak havoc with my family again.  I think about how far Jasmine has come, how much she has accomplished, how she is like every other 8 year old in her class.  I think about her warrior brother and how he's overcome his fears of losing his little sister.  How he has watched her at her worse and hidden from her pain at times and at others let her put her head on his lap to watch tv together when she's been too tired or sick to sit.  I think about my marriage - the grand canyon - how we have been so separate and far apart and isolated unable to breach this chasm between us so we've travelled on opposites sides for a time.  I think about how we might build a bridge to find each other again.
And I think about that email I sent to the family about to leave for Boston to begin proton beam radiation.  Forced to leave their home and at the beginning of their 5 year old daughter's journey.  I wanted to go with that mama and hold her hand.  I wanted to hold her like I held Jasmine, and tell her it's alright, take her to all her appointments until she knows the team there, find her a place to stay.  It's what I wanted to do, but how do you wrap all that up in an email or phone call?  So I tell her about Boston and that going there is going to be OK.
Jasmine's MRI will happen Thursday, then we wait a week for results.  We wait and wonder whether it's clear.  And I realize that we keep on putting ourselves through this scanxiety because if it's clear, it amounts to someone holding me.  Someone telling me it's OK, that's there's nothing to fear and for now, it will be alright.

Send

Hey there,

It's been a while since I jumped on board, but it's Friday so here's my link up with the flash mob of writers who gather weekly and write, without worrying whether it's just right, we just write for five minutes.  This week Kate has prompted us with "Send"

When I send this to you, know that I would rather be knocking on your door.  When I send this to you, know that though the words poured out and flowed through ink to paper, that I would rather have poured out my heart as we poured out the tea.  When I send this to you, know that I thought about you and as my hand ached writing the words - (oh yes, the craft of handwriting makes my hand ache these days as the techno typing world takes over - a hand written letter is a rarity and joy indeed!) - as my hand ached, my heart ached with the not seeing you for all this time.  I will wrap up my news in an envelope and send it to you, and it's written and delivered with love.  But know this - I would rather be sealing myself in an envelope and have the post deliver me to your doorstep, where the tangible real of some moments with some shared life with you, would mean the world to me.

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.

l 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 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.