Happy shoes, ninja courage and dress ups

I waited until this morning to break the news that we were heading in to the hospital for Oscar's check-up. Oscar took the news quietly, then disappeared and, as I was preparing some of my strategies to convince him to get in the car, he suddenly burst out of his room in a ninja costume looking fierce and declaring he was ready to go. Auden was still not convinced so I put on my red happy shoes (or clown shoes) and promised to make it fun. Auden then got dressed up in Daddy's clothes and grabbed three of his books to take with him to read and reluctantly agreed.

In the car I put on happy music and kept the boys laughing as I impersonated a clown with my big red shoes and funny jokes. Oscar fell asleep (he's seen all my strategies and heard all my jokes before) but Auden stayed happy and laughing all the way.

Within two minutes of entering the hospital building we ran into an actual clown, the Clown Dr himself, proving that you attract the energy you bring with you. We've only stumbled across the Clown Dr 3 or 4 times in all the years we have been going to the hospital and in all the many hours, days, weeks we lived there - so this was a treat the boys fell all over themselves enjoying.

 

 

At the Oncology Clinic Oscar took his blood test really well. Simply said 'ouch' - a first for not screaming or shedding so much as a tear. His ninja suit protected him well. Auden stood beside us watching every little detail and asking questions. The nurses all fussed over what a good brother Auden was, which made him shy but I could tell he definitely liked it.

The wait was quite long today but the boys were pretty happy - Auden read his book and Oscar went into the play room to colour in. A toddler having treatment took to Auden and kept trying to climb into his lap which he was somewhat nonplussed by (but also secretly delighted). Auden also asked lots of questions about the nasal tubes, central lines and hearing aids that many of the kids had. He remembers Oscar being bald and sick but didn't remember the other details as its been a good long while since he visited. He also asked the question he has asked me many times before, 'Did I have a nasal tube? Did I lose my hair? Why not? Does everyone have to lose their hair and have medicine?" I have answered this so many times but still he wonders why some kids have to experience these things and some don't. We all wonder about that and there isn't any really easy answer except because its the luck of the drawer. You could tell this didn't really satisfy his curiosity and I have no doubt the questions will be asked again next time but he wasn't too worried about it. Just intrigued, wanting to understand.

Oscar on the other hand couldn't be less interested in all that stuff. He made himself at home in the play room with the pink lady volunteer who remembered him and marvelled at how grown up he was. He was completely self contained and on his own program, knowing the drill and navigating the familiarity with ease whilst also delighting in the people fussing over him in his ninja costume.

Finally, Dr M came to get us. It's always great to see her. Auden declared 'Do you know we have waited three hours', because he can count and tell time a whole lot better than last time he was at the clinic. Certainly, being able to count the hours don't make them go quicker although really three hours is pretty good when you see how many kids are there and how many different treatments the nurses and doctors are managing. We've waited a whole lot longer many, many times but Auden was amazed and somewhat confused about how it could possibly take so long to get Oscar's results.

On that topic there is nothing but good news - bloods are all good. YAY!

As we left the hospital I felt that wonderful thrill of exiting those doors and leaving that world behind us, its somewhat like the feeling that you have dodged a bullet, been let out of prison early due to some miraculous event that you don't want to ask too many questions about in case they change their minds. Head down, fly out of there before someone calls you back.

You have escaped but you are also aware of how precarious a situation it is and how you have left behind some other good people, some very human families who are still waiting for someone to give them permission to go home and breath again. Still surviving the minutes as best they can, doing time - and hospital time can be as slow and cruel as time gets. There are moments when it may even appear that time has stopped and you can feel like gravity itself has abandoned you. There are moments when the concept of time itself is outside the reach of your consciousness, let alone a part of your vocabulary.

And yet.

And yet.

One day they let you go home and you find a new 'normal' and you smile and you put your clown shoes on and be grateful for every moment.

Every precious moment.

Drifting around you like snow flakes in the desert. Surreal. Wonderful.

And as random as a cancer diagnosis.

Take care beautiful people and thanks for checking in on us. When you can manage it chose to wear your happy shoes, escape into your imagination or play dress ups. And when you find you can't make these choices, when you are merely 'doing time' or surviving one moment to the next, try not to count the minutes, be kind to yourself as much as you can and let go of everything else. Breathe. Wait in the space of potential for better things and abandon expectations. I love you from your nose to your tippy toes no matter what choices you make. Love Cindy x

Word Wonder

"When we tell a story we exercise control, but in such a way as to leave a gap, an opening. It is a version, but never the final one. And perhaps we hope that the silences will be heard by someone else, and the story can continue, can be retold."
Jeannette Winterson, 'Why Be Happy When You Can Be Normal."

I recently listened to a Podcast discussion about' 'Finding Your Voice After Trauma' with Dr Phillips, a psychologist in the United States, where she talked about the power of writing down our stories of trauma and thereby transforming the experience. Trauma defies language because often we have no words for that which is frightening. Our fight or flight system kicks into overdrive and the left hemisphere of the brain is suppressed, leaving us genuinely without the capacity to formulate a narrative for what we are experiencing. Instead, what we are left with are images, flashes of memory and body sensations that become triggers for the flight and fight response even after we are no longer in danger/crisis.

Her remedy for this was to seek out a way to use the nightmares/flashbacks as an opportunity to find the language for the experience. She even suggests going back to that moment that triggers the strong memory and to ask yourself some key questions - like, what do you wish you had said/done at the time. If you can find a way to create a narrative of what occurred you can allow your body to drop the state of hyper arousal. She also suggested that by sharing your story, even if you are only writing it on the page of a journal no one else sees, you are allowing a space to open where someone else is holding the story with you.

On the same Podcasts Tracy Ross, the author of 'The Source of All Things', also states that the telling of the story can help you find a new compassion for yourself as well as providing your self esteem with encouragement because the mere act of writing down our experiences indirectly tells us that we deserve to tell it. That is to say, by becoming the author of our stories we shift from being the victim to being an active voice of experience.

For those of you who have followed this blog through all the ups and downs that are the cancer journey you know that this has been a real obsession of mine. When I stumbled upon Jeannette Wintersons brilliantly articulated story of her traumatic childhood in 'Why Be Happy When You Can Be Normal' I found a key to the door I had been struggling to open. It was the door to the words that had kept me feeling extremely isolated by the traumatic experience I was having as the mother/nurse/carer of little Oscar on his journey to health. And that door and those words were this blog.

This blog has been my opening, my way of finding a narrative for the indescribable experience I was having and a way for you to hold that space for me and to help me find some compassion for myself. All of these things were what I most needed on this journey. They are what held me up. So, by reading these words on this blog it is you who has held me up. Thank you (and again, I arrive at a place where words are not enough to describe my gratitude). I can imagine that it was not always easy to read and definitely not enjoyable at times but you still showed up and shared this space with me. I want you to know that I do not underestimate the power of this and how much I appreciate you taking the time to do so. In the absence of being able to articulate myself as well as I wish I could about how much this has helped me I keep searching in the books of great writers.

Finding compassion for myself is hard for me. I have always been hard on myself. Aren't we all? And no more so than as a mother. No matter how illogical it may sound I always strongly felt at a deep, untouchable level, that Oscar's suffering was my responsibility - and that includes everything (his diagnoses, his treatment, his ongoing well being). He was only 18 months when he was diagnosed so who else was going to be responsible other than me, his mum? As parents there is no greater time of responsibility than those years before our children can speak up for themselves and when they are most dependent on us to help them negotiate an understanding of every little thing that life entails -eating, sleeping, crawling, walking and eventually talking. And that does not even scratch the surface of the emotions they have to navigate and the complexities that come with being a human being and doing in a complex world. Its a tough gig and we all struggle with it and do the best we can.

Throw in a life threatening disease, a horrendous medical protocol of procedures and a horrific number of medicines to administer and the responsibility is incomprehensible. I  got through it in s state of hyped up sensations and instincts. People tell you how brave you are but it doesn't register because you aren't brave, you just have no choice, and because you are so far removed from your own brain that the concept does not have a register in your system anymore. Brave? What is brave? Words start to mean nothing because you can't reach them, they have been shut down by the brain that functions at that primal level where really the only thing you can hear is the sound of your own scream.

When you do find words, you find the way back to yourself and the world. You exist again. And you can change the story.

I had the great fortune to hear Jeannette Winterson talk about this live at the Opera House the other night and I just want to say thank you to her for her deep diving the words for me and to all of you for reading my words in whatever form I could find them here on this blog.

Never underestimate words - read them, write them, seek them out when you need them and celebrate them in whatever way you can - they connect us, they help us walk in each others shoes and they allow us to become the author of our own lives.

Oscar is doing well and he is never lost for words. Such is the joyous confidence of his 5 year old self. On 22 June it was the 4th anniversary of his diagnosis. We had a nice family dinner and let the date slip by in the ordinariness of our daily life. If we try to explain it to Oscar he really doesn't understand. He can't imagine a world where he is sick and in hospital, it makes no sense to him. He has no memory of it at all and shrugs it off as ridiculous.

Auden is also doing well. He remembers more but still has very few words to describe it. He needs me in ways that are unique to his experience and I continue to try to deep dive the words for him when he needs it and in the ways that he needs it. To be honest, he is still working on trusting words I think. He is rightly cautious about everything to do with words and stories. He only wants the truth I think but I have to wait for him to tell me.

I can't speak for Pete and he doesn't use a whole lot of words. Never has. He thinks I use way too many (LOL).

Take care beautiful people. Use kind words when you talk to yourself and each other, hold each others stories with a loving hand, be silent and wait for the right opening, xx

So Many Hearts..

Today is another day where I wish I was a better mother. A better human being. I cannot connect with all the wonderful things in my life that I have to be grateful for. I feel at a distance. I am selfishly in my own head, tired, intolerant and unable to enjoy the moments that I have been graced with. I hate myself for this and for all that other stuff that I should be doing but can’t. So deeply tired. So many things I don’t know how to handle or understand. Please forgive me for sharing this with you and be patient as this blog gets better. I am lifting myself up with each word I write in sharing honestly with you.

I want to go back to the person I was before I knew that there are no reasons for things. When I thought things made sense. In my professional life I always end up drafting a spreadsheet of some given task to track what is working, what isn’t, what could function better. It is never part of my job description but it is something I can’t stop myself from doing. And I know I add value as a result of it. I am good at identifying ways to improve procedures, ways to reduce risk and control outcomes as much as possible. My work environment benefits but this natural inclination of mine does not sit well in my personal life.

If I were to do a spreadsheet of everything that I did with Oscar up until the day of his diagnosis I would be no clearer about why he got sick or how I might prevent it from happening again. Likewise, if I were to do a spreadsheet of all his activities since he has been in remission and compare them with another little boy whom we journeyed with and who is in my heart each day  – there would be no identifiable reason why one boy is still in remission and the other has relapsed. I cannot apply my usual analytics and the Doctors cannot even apply a medical model that will answer those questions. They are unfathomable.

I want to fathom them.

Last night as Oscar was going to bed he told me, “Mummy, I have 6 hearts” and I asked him how come and he said, “I have one heart for Marshy (our cat who sat on his lap and gave him comfort when he was critically ill and who is no longer with us), one heart for my nice dream about Marshy (he dreamt about him the other night), one heart for Auden, one heart for mummy, one heart for daddy, one heart for Mellow (our other cat), one heart for Tiger (new kitten) and one heart for Lilly (other new kitten). I have SO MANY hearts.”

Despite all the selfish negativity that I hide inside my mind these beautiful words of Oscar’s cut through the fog and crap and made me smile. Bless his cotton socks.

My brain is overloaded with too many burdens and Oscar reminds me to go back to that simple place. Of course, Oscar doesn’t have to pay the bills, organise the dinner, shop, clean, wash, parent effectively and so on. I wouldn’t want it any other way. May his childhood last long and be rich with imagination and wonder!

When I disappeared from Auden’s life when Oscar was in hospital I think too big a burden was placed upon Auden. I hate myself for that. I couldn’t help it, but I hate it. Most of the time I let it go and then I have a parent teacher interview and I walk away devastated all over again. I can’t take back that time that I wasn’t there reading to him and helping him understand the world. Nor can I take back the fact that our particular world at that time was beyond my ability to help him understand. I did my best. I would sit him down in the corridors of the hospital as he screamed at being taken back home and was so deeply distressed. I’d sit down on the ground in the middle of the hospital walkway and take him in my arms and just calm him down. Then I would gently explain that he had to go home without me but that it would be okay and I would hold him and tell him he didn’t have to go anywhere until he was ready. And I would wait. And he would eventually pretend he was ready. And I would pretend I was okay too and then I would return to Oscar and ‘model’ the resilience he needed by pretending some more until we all pretended ourselves into some kind of functional universe. If I had done a spreadsheet I guess I would have identified that we all did the best we could.

The only one who didn’t ever pretend was Oscar. He made every little thing very clear. If he didn’t like the way a nurse did something he screamed. If he wanted something done a certain way he pointed it out (even when he was not yet verbal). To this day he is still making sure we all know exactly how he is feeling all the time. LOUDLY.

Auden, though, is quiet. He keeps things to himself. He is a thinker and he is smart and yet he keeps that hidden from his teachers. I constantly desire that everyone could know him as I do, could see his inner light and his amazing courage.

Interestingly, even though Oscar won’t pretend about his feelings and his needs he is the ultimate at being pretend superheroes and playing imaginary games. Auden somehow lost that phase during Oscar’s illness and he has little interest in imaginary worlds. He’s not keen on tv or movies and the stories he requests every day are real stories. He wants me to tell him stories about when I was a little girl, or when he was a baby and he insists they must be true and is very good at detecting when I am embellishing.

I’m so glad he has sport to escape into. He throws himself into it with a gusto and lets himself shine. It is a wonderful thing to watch.

Yes, I worry. Too much. I need to find all my different hearts again and revel in their magic. I need to turn up at OOSH and know that the staff can find my child without them telling me to go searching in all the toilets. I need not to have to panic because they can’t find the children they are supposed to be watching. I need teachers to slow down and stop pushing so hard for results and to find their hearts. In all this pressurised parenting has everyone forgotten how lucky we are to have children who are healthy, happy and alive to being in the moment? There are so many children with illness or adversity to struggle against, so many children who have real disabilities and hardships that they turn into gifts of love and light.

So many hearts.

Beating.

It is the sound of the primordial heartbeat.

The sound of who we are.

Take care beautiful people. Remember that you have many, many hearts and share them with one another. Much love, Cindy xx

P.S. the kittens are a reward for Oscar giving up his bottle. His bottle got him through his treatment and through many a horrible night in hospital and he is so deeply emotionally attached to it I don't have words to explain. The dentist and Pete and I have tried everything. Finally, he said if he gave up could he have a kitten. I agreed thinking he would never go through with it. And so it is I am bribed again by the most determined young man on the planet. xx 

This blog is dedicated to the staff and volunteers of 'Make a Wish Foundation' for their hard work and dedication and for reminding us what childhood is really about - making joyful memories together. Thank you for a great day out on the harbour. It meant so, so much to us.  xx

Auden in one of his happy places - the basketball court

Auden on the boat with Daddy

Oscar on the boat

Pete and Auden driving the boat

 

Very proud - big school boy now!

Oscar starting school is a miracle and I am so proud of him. People tend to shy away from that word ‘miracle’ but I like to think of it as being any moment where love wins over fear. And there have been many, many moments on Oscar’s journey that have required choosing love over all sorts of seemingly insurmountable challenges. Let me show you, this is what a miracle looks like:  

 In the first month of treatment

 Auden and Oscar supporting each other in the Oncology Ward Play Room

 Auden and Oscar off to school together

When we were in hospital, contained within isolation rooms and confined by our circumstances, I used to play a game with myself. I used to imagine the future. I would visualise future milestones in Oscar’s life. His 21^st, his first driving lesson, even his wedding and, of course, his first day of school. The theory was that if I could visualise it then I could will it into being. I was determined. And it helped pass the time in a positive way.

So when that day came it was everything and yet nothing. It was an impossible dream at times and yet always meant to be. It was shining with triumph, love and a little bit of magic.

Months ago I was in a panic about it. I had a panic attack not long after ‘Look at Big School’ Day hit me in the heart with the intensity of a meteor, hot and fast and unexpected. I could not breathe at the sheer bigness of it, of how far he has come, of the realisation of something that seemed like a foreign land for so long. And yet, on the day, it was easy. It was natural. It was always meant to be. The love of the universe and the energy of the stars held my hand and whispered peace.

He is in his element. He has embraced it in a way I am gobsmacked by. He is drinking it in. He owns his place in this world like the birth right it is and I wonder (not for the first time) – am I his teacher, or is he mine?

I received a lovely message from a mum from our preschool community telling me about him playing hand ball at school with several year 6 girls and beating them. I love that he is this confident, forthright little being and I love that our preschool community still surrounds us with the kindness of passing on shared experience. I love that he runs from me without so much as a look back, happy and keen and confident.

He is a force. Not even cancer can beat him! This school business is easy peasy lemon squeezy.

Meanwhile, Auden checks in on him and beams with brother love and joy that they are together again and shows him all the things that make his world secure. All the things he loves about his school.

And I head off to work.

Who knew – that any of this was possible?

And as I move forward I want so much to take the lessons we have learned with us. There are so many but the most significant for me right now is the gift of focus. When you are in a place of trauma fighting for someone you love to stay alive everything becomes so clear. Anything that does not come from love and healing is cast aside with ease. All the dramas we waste time on are revealed for the farce that they are. You get incredibly disciplined about what you allow yourself to think about. Your energy is given the value it has always deserved because you no longer have the luxury of wasting it. And this wisdom is a treasure placed in your hand. It whispers: this is it, stop your bullshit and get on with it.

No matter what your circumstances I hope you can find the intention to improve them through the choices you make. There is so much we have no control over, so much that gets ripped from us and tears at our hearts but even in the worst of circumstances there is always one thing you can control: the thoughts you choose and the way you choose to respond to them.

Each day I try to have more moments where I choose better thoughts. I don’t always succeed but I try to keep improving, to keep disciplining my mind back to a place of gratitude. Fear still has way too much influence in my life. I still have panic attacks and deep anxiety but I try to distract my mind from the negative loops by writing down everything I am grateful for and by meditating and sometimes by just sitting with it, accepting it and waiting for it to pass.

Thanks again for opening your heart and taking the time to read this. Take care beautiful people. Visualise something greater than the circumstances you find yourself in. Much love, Cindy. xx