The Bloom of Scar Tissue

The Bloom of Scar Tissue

Ponderings

I wrote this blog Sunday 22nd October.

Do you reach inside and find the beauty or accept that skin and shape and lumps and bumps are but an illusion you must not fixate on?

That bump filled with brain fluid was not there before. The under layers of skin were not torn and stretched from the swelling of a saw and staples.

It is 2012 and the only story you know that tells of such things is Frankenstein. A monster. A craniotomy will do that.  Little children cannot come in to visit. It is too distressing. Grown men you have known for years are reduced to tears when they see you, and they struggle to hide it. That thing- that expression. It is a pity and sadness. Yet everyone says you look great, you look fine.

They tell beautiful lies to help keep you grateful for the life you have. The life you hold that keeps your heart beating is what is so important. Their hearts shine true in that moment.

In those months after a craniotomy, I was not a monster, just a little broken. But no longer a girl, no longer a woman. No longer a dancer of ballet, of quick human movement and a painter or a poet. No longer the protector of my children at night while they slept. I prayed each night they were okay. That I could trust those loving them on the daily to make sure they looked at them in the eyes and told them they were loved and safe. Like I did.

I think of myself sometimes when it was tough in the third person.

I think it has been a way to compartmentalise. I was a grateful survivor, and yet a soldier of war with battle scars she did not ask for. She did not volunteer for. Yet she did not fight anyone off, she walked right in and took the needle and signed the forms. She wanted to run, she wanted to scream and hide and say no. But she could not. The inner confusion and turmoil, to damage oneself to live. What a notion.

To say goodbye and kiss the heads of your children, to get in a car and drive to a big bustling place. To get your head shaved and your body naked under a cotton gown not knowing if you will kiss their heads again.

Consequence is a word you hold in your hand like a strange seed you found. Which garden shall you plant that in? The one that faces the north and screams of Victim or the one that says Growth?

Then there is the now.

When I lose myself in the energy of the room, I forget about what I look like, what anyone looks like. It’s because I can feel everything, the love, the humor, the frequency of those around. Things like traditional beauty or prettiness or ugliness or any such appearance do not concern me. Until someone takes a photo. Because then it’s like an ugly little version of my surface just got captured in a bottle and can’t get out. Unless you smash it with a delete button. And then there is the fear with social media, that someone else will share the little version of you and others won’t see your energy, they will see the damage the war did. Why does it matter what they think and see?

Blindness was freedom from all of this. It was a relief. I did not need to see myself; therefore I did not have to validate my appearance. It didn’t matter. Out of sight, out of mind.

No makeup, no hair, no eyes to see the damage. Those super hearing marvel style skills were too much fun and the challenge of learning my environment in a new way all wrapped up in the happiness of still being on the planet surpassed any vanity.

Until my vision returned.

So much joy. Because I got to see my children’s smiles again, the pictures they had drawn for me. The sky windows- puddles in the ocean. So glorious and full. My husband, my family. Their physical, visual picture was mine again to capture with my body’s camera- the eyes. I was not prepared for the trauma of seeing myself again and finally understanding why my little boy cried so much. He wanted Mummy to look like Mummy again, and why the grown men cried. Why the mailman did not recognize me at the door and asked me who I was. I told him it was me and he said it was so sad. I asked him why and he said I was so pretty before… but don’t worry you will be again. And the nurse saw my picture on the wall and asked who it was.
”That’s me.”  It is one of my favourites. It doesn’t look like me anymore.

Society tells you it does not matter it does matter it doesn’t.

Like this barge going back and forth between the shores of depth and shallow. Which one is it? Why do we get so distressed with scars and physical damage? We hero worship the survivor and yet as a species we spend millions on maintaining and enhancing the symmetry of the human appearance. A world that celebrates the beautifully broken on one hand and shining perfectional beauty on the other. Where do they connect? For surely beauty is unique, not a blended image of sameness.

Where is the distinction or balance in this? It used to baffle me, now it intrigues me and mortifies me all in one. I now believe when people speak their perception of what beauty is to them, it reveals the contents of their heart.

Then I got the all clear. Then the all clear was taken away. An inoperable option. Not an option. The lack of an option. We can’t do anymore. How much longer do I have? Not sure. Ok.

So we walk that walk. As a family and yet the unshakeable truth sits within me- LIFE IS FOR LIVING. Not for fear. It is the walk of the possibly dying. Because we all are. So it counts. Every day counts- it’s not a cliche. It is the essence of every single molecule and particle, shape, symmetry and pattern that exists for life to prosper. There’s a whole lot of work going on in the living here and in whatever comes after this version of life, there are many more of this I am sure also. But death is real too, and it might just be that death is but a doorway to another life.

So now I live in this one, I rejoice. I choose to live a life that is full with no excuses, to feel my way intuitively, guided by my understanding and perceptions, hoping to keep them as precise and sharp as possible to be valid and true. I listen to the guidance I receive, and I do my best.

I love within an inch of my being, and I hold those I love dearer than my own heartbeat. The patterns of nature and the design of our world intrigues me, as does geometry and physics, the gleaning of the matrix that supports the whole system has captured my fancy in a way unimaginable. The gifts of the spirit are abundant and my cup runneth over.

Yet still, this undeniably human desire to be physical as I was before the surgery haunts me every time a picture is taken, every time I look in a reflective surface, each time my body won’t work the way I want it to. So I will be grateful, and I will work on trying to mend that broken part within. I will be grateful for the scars and the bumps and distortions, I will be thankful for the migraines, the weird inexplainable seizures, the sleep apnea, and the blood pressure, the brain fog, the short-term memory and the fear of the sound of chainsaws, the narcolepsy stuff and the heartache and even the scar dandruff,  because all of this means I am alive. I breathe. I eat. I love and I live. I am surrounded by good friends and family. I live in a country that is not war inflicted and where I can live this life this way. Because we all have our path to walk.

And I could not have captured this view of real life unless this had all happened. I choose growth and the power of the inner spirit guided by my God to overcome all and sit in Grace.

Why? Because you see restoration of the spirit and growth cannot happen without trauma.

Regardless of what any doctor might say I am going to live.

Because my chapters are not written by humans.

October 23rd this happened:

Neuro clinic appointment.

My brain has healed.

Option 2 Happened. (Bye bye Tiffany)

Car Park: screaming and crying hysterical woman spotted ranting loudly in Major Melbourne Hospital. Blue eyed man pacing in shock with what witnesses say was a a look of dumbfounded oblivion.

Incoherent phone calls to family.

Sister may have fainted.

Shock (hot water bottles, blankets and sister needed for this one)

Joy

Overwhelm

Panic

Joy

Humbled like a small pebble in the bottom of a deeeep ocean. Feeling so small.

More Joy (don’t freak out the kids)

Disbelief

Thanks

“Mum- we have run out of milk again”

Prayer

Vomit

Love

Joy

No more fear- running under the moon

Crying (lots and lots of crying)

Dehydration from crying.

“Are you sure you got it right dear? You didn’t get confused?”

More Joy

Anger

Running

Parked outside Flight Centre and considered flying and climbing something really big and shaving my head at the same time and screaming ODONNELL RULES. (That was a weird moment) rang one besty who told me to do it and the sensible one said go home and sleep.

Spontaneous outbursts of laughing

Rage

Sat up in bed next to my sister while we planned our nursing home antics. (We will be room sharing)

Persistent need to kiss my children and it’s now giving them them shits.

Joy

Uncontrollable smiling – it’s a little creepy

Now resting

Life is good. I need a new word. There are no words. I think I am going to faint and cry and I don’t know what.

Bucket list is ticked…now WHAT?

A Transformative Life

There is a photograph of Jillie A. Carter as a young school teacher and beauty queen...   Her...
The Secret Language of Tiffany

The Secret Language of Tiffany

The Ferris Bueller soundtrack is playing on Spotify, Twist and Shout sounds so good on a Saturday.  

The sun has finally decided to show up, and I am sitting here, fingers to the ready- heart on a wire and full to the very edge of the teacup with feeling. Is it a safe time to write? The new discovery for me is- yes. These are the times when the writing comes easily, flowing from brain to page like an overzealous child- all vulnerability has sidestepped when this takes place. She has taken off, shaking her head in disgust. I ignore her. We need to give her a name. She is the hider of the Freak Flag, she doesn’t like it when I fly it. We shall name her Sargeant Tiffany. She’s no fun.

Tiffany the fun police

It is a big week for us. For me.

It either has the potential to go either way- a crazy game of Sliding Doors and what’s behind door 27? Shall we peek? Let’s not think about it. Let us think about it non-stop. Distraction, distraction…Hello, Monday you wonderous creature.

There are several options on offer Monday at the Hospital. Are you ready Madame?

Option 1: This revolting thing in my brain has actually completely stabilized, which means is still sitting there like the terminator with its finger on the trigger, but the finger stopped getting itchy.

Option 2: The bugger has gone. I repeat the A-hole has left the building. See you later alligator, astalavista. Like a magical butterfly and the power of all healing, it is completely gonesky, which means I can just die like mostly everyone else- unexpectedly.

Option 3: It has sprouted some new leaks which means more brain surgery. This means getting really fat again because of steroids. This is not an option. I love a good rolly polly belly like anyone else, but enough already.

Option 4: Some wonder human somewhere on this planet has come up with a way to fix it. Let’s call him Bob.

Option 5: I don’t go, and I pretend everything is perfectly peachy. This is a very tempting albeit stupid. I have done this multiple times. It stops me thinking about the D word. No one likes that word. No matter how enlightened we believe we are. No one likes a D word dropper.

Option 6: I’m still pondering on this one…I will keep you posted. At the moment it resembles smoking a joint with Willie Nelson and playing with a basket of baby Sloths. I can’t technically smoke a joint so I might be on rolling duties for Willie. That’s ok. I can roll a mean paper (don’t judge me, I had to roll my dad’s cigarettes ok?)

Sloth Ponderings Kirsten Macdonald

This resilience thing is mad.

Yesterday I stood at my sink, elbow deep in this beautiful new grandma sink, fired in France, beautiful fireclay, deep and shiny. I hated washing dishes, now it’s like a lovely bath. Blue eyes stood next to me drying the dishes.

“You ok?”

“I don’t want to die.”

“I don’t want you to die either.”

“Well, that’s good. Because if you did, that would kind of suck. Lucky you still like me.”

“How can I not? You make me laugh.”

“It’s not very fair any of this is it?”

“Nope.”

“I am feeling sorry for myself.”

“Me too.”

“I just want it to be fixed and never think about it anymore. It’s taking up too much space in my brain.” I am good at puns.

Then Hilltop Hoods Cosby sweater starts playing, and he does the dance that makes me laugh too hard. There is some pelvic thrusting that is slightly off rhythm and this thing he does with his butt.

How did we become this resilient?

We talk about it a bit. As we get older, the conflicts between humanity become more obvious. The bigger things mean more to us. The need for emotional intelligence suddenly becomes the focus and not the mortgage. It occurs to me that the friction of humanity is the cause of joy and pain.

Echoes of the inflictions of childhood build walls of muscle and grit- a toolbox of tricks that can protect us and then trip us up. All in one- a double doozy. The perseverance and seeking of peace propel us forward if we are brave enough to break open the armor and bare our skin. Telling old Sargent Tiffany of vulnerability police that it is ok to show vulnerability and truth.

Leaderboard Ponderings 2

It is vulnerability and truth and being aware of the silent witness within that breaks us into freedom. Deep huh? Hey don’t analyse mine, check out your own muscles, those suckers are there, along with a peacepipe and a marching band. So many situations rely on those muscles, and then we need to break free of them. All sorts of circumstances, in all walks of life. 

The opposite of this is building a romance with defense.

Gathering evidence to keep ourselves safe. The internal bodyguard becomes a jailer. Whispering platitudes, distractions, and conflicts on replay. Playing back all the old vinyl with their scratches and grooves. Maybe it’s time to sharpen the needle, to play the real music and stop whistling everyone else’s tune.

I have realized I don’t like significance. Weird huh? I love it when other people wear it like a beautiful cape or jacket- but it’s never looked delicious on me. It makes my skin feel ick.

I do not want to be significant. The feeling creates anger within. Why? 

If I am sick- it is significant. If I suddenly become miraculously well- this is also significant.

Both matter. Both have weight. I don’t like the weight. I learned very young that importance of not being too significant- to go under the radar. I don’t do it very well, but it is a primal part of my core belief system. These feelings of deep anger are being triggered by the romance of defense. So I write these words fiercely as if I am paddling as fast as I can in rapids, something pushes me forward. The anger is not good. It makes me angry. The irony is deafening.

Leaderboard Ponderings 3

The cognitive pieces of the puzzle are slowly coming together. Stealth mode can kick in at any time, so watch it. I cannot control it. 

Tiffany just sat down in front of me looking very dazed and confused, she just dropped her badge on the table and asked me why I was writing this piece of communication? Who is it for? 

Tiffany the Vulnerable Police

The introvert-extrovert pendulum is swinging like a crazy monkey on a swing with a banana.

I am not an angry human as a rule. It doesn’t sit very well in my body. But I am a writer. So what does one do in this situation? She writes, prints and rolls it up, placing into a very groovy hipster bottle, it is some kind of pharmacy bottle from the 1940’s, pop a cork in the end and throws it out into the sea, watching the waves take it to whoever feels they may like to read it. I just wrote about myself in the third person. It’s a Ferris Bueller thing to do.

Then I get off the car in the middle of the street, the marching band and street parade has gone home.

So I go to my candle, and I pray. The anger has gone. Just like that. With a request and a chord of silver shooting to the architect. I am grateful for life. A big fat full life. The little version of blue eyes comes out and asks if I would like a cup of tea. The middle blessing is smiling getting ready for a party, very handsome. The eldest, the strong and vibrant young woman is finishing an essay. We did ok. We did more than ok. We are here and that sun is shining.

I stop typing, and then there’s that Ferris soundtrack. Hey ustj-ay no-ay het-ay- uietqay- does anyone have Willie Nelson’s phone number?

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Dear God, it’s me Rod

Dear God, it’s me Rod

The final part of my interview with Fr. Rod Bower, we talk heaven, kingdoms, Shakespeare and prophetic wisdom.

Kirsten: So Father Rod, heaven. What is is all about?

Fr. Rod: We get obsessed with the how do we get to heaven thing? It’s become a Christian obsession!

Ultimately Jesus was only essentially concerned with one thing. That’s what he called, ‘Kingdom’. The Kingdom of God or the Kingdom of Heaven depending on which gospel you read, and that has nothing to do with the afterlife at all. People make that mistake. He’s a first century Jew; he doesn’t care about the afterlife and what comes with it. We have a system on how to get to Heaven and such, but they don’t.

Kirsten: So, it wasn’t relevant at that time at all.
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Fr Rod: It’s become a Christian obsession. It certainly wasn’t in the first century Jew or even possibly the modern Jew. First century Jews had this concept of time, which was the current time we are in,  and the time that is to come. And for them, that was one of the post-Messianic time. They were very caught up in the Messianic stuff. So, the world has a future of being that is different to what it is now, and that is in part only brought about by living it and saying, ‘the kingdom of heaven is here.’ It’s kind of almost here, and you can reach out and touch it, it’s kind of here, but it isn’t yet. So for me, part of that manifestation of the Kingdom is the social ethic stuff and how do we do things? And that’s the big question he’s asking.

Fr. Rod: I’m quite orthodox. I mean what I find with the conservatives who try to drag me down from time to time, is that they have an idea that there’s an orthodox theological line in the sand, you’ve crossed that, and therefore you’re a heretic. Many don’t have a deep questioning of what that particular doctrine REALLY looks like, where it came from, why do we have it, what did that mean in the 3rd century?

Kirsten: Yes, the cultural context of the Bible, do you find that people tend to generalize and they take it for today, and it has nothing to do with today?

Fr. Rod: Oh yes. Take the sexuality debate; it’s a classic example. The modern Bible translates a word as homosexual. It’s not;  you can’t translate that word like that. The whole concept doesn’t exist in the first century. And so people are thumping and turning up on your doorstep with their Bibles open to 1 Corinthians or whatever text they’ve found, and they’ll point and say, look it says ‘Homosexuals.’ And I say, No, it doesn’t!  

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Kirsten: Yes,  it’s fascinating that people can take ancient text and wrap their agenda up within it. We’re such complex psychological creatures with so many different layers and levels; it’s a narrative between the line of virtue and excess, I suppose? Jesus was by all accounts a disruptor that challenged the status quo at the time, by asking those questions. I come from a bit of both Anglican-Lutheran hybrid, and in my experience, the Anglican Church can be very stoic and stiff upper lip, in many ways, and we haven’t always seen eye to eye, lol.  You come across as an incredibly warm and engaging person and very progressive. Has this always been a part you or is that something that’s evolved through your career? How have the heck have you gotten away with it?

Fr. Rod: My parents were graziers from country NSW in the Hunter Valley and so I grew up with a very conservative, nominally Christian Country Party environment, and indeed I was very politically conservative for a long time. I know that Tony Abbott referred to me as left wing, as he was wheeled out to counteract what I said about Mr. Dutton. But I certainly would reject that. I certainly am not a left wing. I’m a centrist. I grew up with very conservative beliefs. I remember there was a rejoicing in my family in 1975 when Whitlam was sacked. My father said, ‘if he hadn’t been sacked, the communists would come and take everything and blood would flow in the gutters.’

EVERYTHING

(Laughs) But I grew up in the Fraser Liberal years, and I became more aware of a centrist conservatism when I was in my early twenties.

Kirsten: Oh wow, that’s very passionate conservatism. So how would you describe yourself now?

Fr. Rod: I’m a fiscal conservative and a social progressive in that sense. My passion for marriage equality is not at all a progressive thing; it’s a very conservative thing.

I think marriage is important.

Kirsten: I have noticed that the message you’ve put across to people is to remember the very fundamentals of Christianity and if you do this, you’ve got the rest sorted out. It looks after itself, doesn’t it?  Hospitality and kindness and you know…

Fr. Rod: Justice!

Kirsten: Yes, justice! So marriage equality, talk to me…

Fr. Rod: Yeah, I have a very conservative view of marriage. I think it’s important; it’s one of the cornerstones of our society. And therefore, it ought to be available to any two adults who want to form a life together because I think it’s good for society.

Kirsten: I know for many leaders in the church you are held to account by your parish, you can’t just suddenly start jumping around changing things up. The church can be very staunch and unchanging and “color within the lines” so to speak in practice. So you must have a wonderful balance of respect from supporters within the Church community for you to be able to live-stream and be the way you are out there in social media- would you say this is true?

Fr. Rod: It’s been a very long evolution, and then you need a long period of creating trust and evolving together in mutual respect, to a point where the congregation can do what we are doing.

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Kirsten: When they go, he’s got this?

Fr. Rod:  Yes, but we’ve had a small number of people leave. Over the last 4-5 years, as we become much more vocal on social issues, although we have had many more come. The congregation has grown substantially.  

So I have a congregation that doesn’t blindly follow what I say. They will question, and they will challenge, and they will say, ‘come on, maybe that wasn’t such a great idea.’

Planet Spectrum

Kirsten: Wow, so this means they’re really invested in the Church. That’s wonderful. There’s a relationship there.

Kirsten: So when was the first time you decided to put a sign out the front?

Fr. Rod: June 2013, Dear Christians People Are Gay, Get Over It, Love God.

It went viral and gave us a platform. Our facebook went from 150 to 3000 likes, and we thought that was a lot then! We have weeks of 2 million hits now.

Kirsten: This is both extraordinary and wonderful what made you decide to put that up?

Fr. Rod: It was a specific event, I encountered a gay man and went to give him the last rights. The idea that the family was afraid that I would judge this man, so disturbed me. Their fear of my judgment. I felt I needed to say something about that. It was a watershed moment, and it was a profound moment. It went crazy, and it hasn’t really stopped being crazy.

Kirsten: Your brave move to disrupt and create waves… it takes courage to do that. I am in awe of your bravery, within your backyard and the greater community. It reminds me a little of someone…

Fr. Rod: Well, you know it’s the prophetic voice. A prophetic voice is a disruptive voice. Traditionally in the 8th century, prophets, they were social commentators, they came into town they looked around and said if you keep going down this track, this is where you are going to end up. So it is a disruptive kind of ministry.

For example with refugees, if you keep treating them like this you re going to damage your corporate soul. You can’t do that; you just can’t.

There are three aspects to that kind of prophetic ministry.

1) You have to be prepared to live on the edges of your community, and I do, I live on the edge of the church.

2) You have to be really clear. You can’t prevaricate. You are not the academic that sees both sides of the argument, that’s a different kind of ministry. You have to be entirely clear on what you are saying.

3) You need to be prepared to be outrageous to be heard, and stand out. But it’s not about standing out for yourself. If you do that, you will come crashing down very quickly. The only reason you want to stand out is for the sake of what you are saying.

Kirsten: I think it is so important for religious leaders to do this, as it may encourage other people in positions of power to speak out. Right throughout history, religious leaders have been the social commentators of moral guidance don’t you think?

Fr. Rod: Absolutely. Look right back, to the civil rights movement, Martin Lither King was a, Christian minister, South Africa has Desmond Tutu,  an Anglican bishop, Oscar Romaro Maro, Gandhi… Go back into the anti-slavery movement that came with John Newton’s journey with Amazing Grace, he was an Anglican Priest, there are SO many.  St Francis is another,  hey even the boss himself! There’s a long tradition of the meddlesome clergy. I love a bit of Shakespearian reference. Who will rid me of this meddlesome priest?

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Kirsten: And that dear Ponderers, is how I made a new friend and a new found respect for leaders with beliefs who are brave enough to speak out about moral imbalances and injustice. For it is this attitude and dedication to truth that keeps the balance, provides safety and clears the dark corners from shadows. You see I have come to believe that any areas in this world where power exists has the potential for personal shadows to invade and commit acts that are wrong. When light-bearers speak out and bring the glow to those shadows, goodness has a chance to prosper. Any organization where power exists, be it economic, personal, sexual or cultural there needs to be a leader of light to keep the moral compass firmly in position and help keep people safe.

 

 

Message in a bottle

Message in a bottle

Panic, small child panic. The only way it fades is to give my heart over to grace, surrender all and sleep. This is my prescription for a hurting heart. Fear is my enemy and yet it reminds me again of my purpose, my plight. It makes me realize that this is the condition of being human; we lapse back into the business of life and we forget, is it a fault or a necessary facet of survival?

But I cannot sleep. I am sitting on a hard plastic chair in a sterile room.

I do not like to feel vulnerable. I do not have the coping skills for it. Vulnerable on some level equals harm. Why is this? Vulnerable makes me want to tuck in my wings and go home. I do not want her to be in this room, she has to come home with us today healthy. I want to cling to her fast and sure. The words Vulnerable and Her trigger something within that makes tears form, moistening my eyes. My heart feels swollen and inflamed, just short of anger.

My internal force wants to tuck her up and take this moment away quickly and without pain – does us no good its a pointless exercise of the mother. We are sitting in a waiting room.

He told us it has grown. The growth in her Brain has grown. He is going to see what is to be done. It’s not an area they would be interested in operating on, its too deep. Too deep. What does that even mean? I’ve been told I can be too deep. Too deep is a bad thing? Yes, isn’t great. What is it then? I had too deep and I was blind and had to learn how to walk again. I had too deep and I am here still waiting for Fred to work and keep me alive each day.  I’ve seen what 160 staples in my head look like.

Something comes to mind after I look at my husband’s face. His face is ashen and has turned a sickly white transparent sheen very quickly. His lips have thinned and he looks at her, looks at me, looks at the ground.

I look at my beautiful daughter; Her faith is built on a rock, and her hearts desire will come to pass, under grace and in a miraculous way is what I think as I look at her beautiful big 17 year old eyes, too wise for one so young. Nothing can defeat God, therefore nothing can defeat her. God’s plans for her are built on a rock. What was hers in the beginning, is hers now and ever will be hers. We cannot lose anything which is born from love. She is not lost to me.

I am reminded by a passage I read recently by Florence Scovel Shinn that said

“ To believe in something enough that it cannot help but manifest is to know the power of faith. Just to imagine is not enough. You must back your imaginings with every ounce of courage, love and conviction your heart can muster. This is when you will truly find peace.” I then remember a little plaque I have someone gave me when I was in rehab recovering from brain surgery that said “Be taken up and thrown into the sea, and if you do not doubt in your heart, but believe that what you say will come to pass, it will be done for you”- Mark 11:22

Am I doing this now? Am I believing? Am I doing the right thing by her? How can I soothe her and him? These two parts of our whole are hurting in front of me. So I do what I am reminded of, I squeeze their hands and believe that no matter what he comes in and says- it iS GOING TO BE OK. We cannot be defeated. We are not alone, we are not vulnerable. All will be well. I back up my imaginings of what will come to pass- that no matter what he says we can handle it.

She sits in front of me, fighting back tears, and looks at us apologetically. I squeeze her hand and remind her its ok to cry and she responds in a way typical of our weird genetics (my sister and I both suffer from this) a nervous onset of giggles and a wiping of the tears, then a smile, sad but a smile. We sit there for 12 minutes knowing it has grown but as we all look at each other something is changing- we are remembering our resilience, remembering how toughened we have all become and mighty through this journey we have all been on together.

He enters the room and says that’s it all ok, he’s checked with the surgeons -the growth is within an acceptable range, unless there are any new symptoms they don’t need to see her again for twelve months. The growth could just be from two different people reading the scans or a different perspective. It’s a good outcome, don’t worry. Here are a list of her symptoms. One of them is- if she doesn’t wake up. A small amount of vomit hits the back of my throat. Like the tears, my body reabsorbs this unwanted fluid.

I fire questions at him like a Captain firing a semi automatic and he answers every one of them, some with surety, some nervously. He is a nice young man.

We leave.

We try process on the way home, all of us with gusto; talking, teary, yelling, angry. Discussing accuracy, second opinions, what does this mean, that mean. How does she feel? Are we good? Yes we are good.

By the time we get home we are all exhausted. We are all relieved. She is ok. She’s going to be ok. She came home.

She does her homework.

I cook dinner, He takes out the rubbish and feeds the dogs. He hugs us all lots that night. He gives awesome hugs.

We return phone calls. How is she? She’s fine, all good for another 12 months. It cannot be explained ; this day that we have had. This confusing paradox of a day, of roses and leeches. How do we have the words when we have not yet fully processed it ourselves?

When I go to bed I close my eyes and give thanks for my family’s faith, it continually gets us through these times in tact. I am revealing so much here in this pondering it scares me, I am being vulnerable because there might be one of you out there that can understand, can feel it too and know that its going to be ok. For some reason this is why I write.

This is a message in a bottle.

This sense of faith my little tribe has is like a well of spring water in a desert. We draw from it what we need, it gives us reflection, tools and peace. I lay there and picture in my mind a big bubble made up of every color of the rainbow and inside are epic particle of feelings of peace, grace and calm and I send it out to the world asking for it go to every parent and child who is unwell.

We are on the road less travelled, but we are on it together.

Blessings to you and yours.

messagein abottle

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