Hammer in the marking pegs – ping bang tap!

Today 2 years ago -“I can confirm that, it is in fact Leukaemia” – the first of many terrifying sentences we would hear. In and out the door they went to the next appointment.

I stared out the window, thinking about how hard it is going to be to tell our family, the longer they didn’t know, the longer they will still have hopeful doubt like we had just a mare half hour ago.

Chace came tearing into the little room, pulling at this, tugging at that. I remember thinking how everything seemed to be moving in slow motion. My head was so full of questions, that they had all amalgamated into a big blur of confusion.

My mind tried to recap the events of that day, as if someone pressed the rewind button, I was transported to an earlier moment that day -The elevator door opens, and we are greeted by a familiar face that we met in Waikato Hospital ED room weeks ago. She has a look of shock on her face, “What are you doing here!?” “This is Cancer” as she pointed down to the ward floor.

“yeah I know but we are going to see the Haematologist, baby’s got a blood disorder” – I cant believe my naivety and how easily I brushed off her concern. My mind was irrationally logic; there are two areas of specialties on this floor, oncology and haematology. In my mind that clearly and definitively meant two distinct specialties, cancer – and blood disorders. The “wise” words of the previous doctors had stuck in my mind, my son had ITP – a blood disorder, not cancer! – Oh how I accepted this initial mis-diagnosis as gospel. I guess im not to blame, how else would one interpret the sentence “I can unequivocally say, its not Leukaemia”.

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Plan the road. Plan the road. Mark it on the map.

The mama bear treads softly as to not wake her sleeping cub. She has licked his wounds, nursed him and patted him to sleep. She quietly leaves her den. As she scurries along the track, she gathers her necessities for the long night, it will be a long one, constantly on alert and never truly asleep, just drifting in and out. She’ll need to stock up on her energy.

She is constantly aware of the dangers, her little cub, so very weak, could wake at any moment. He would be worried, yelping for his mama. Maybe he would try and clamber down from his nook, perhaps he would forget the vines and obstacles that barricade him in. He may trip and hurt himself. With this thought, the mama bear becomes worried. She paces swiftly but quietly back to him,  ever aware of the other dens and protective mama bears, to wake them may initiate an encounter that she would rather steer clear from.

As she paces closer, she hears a roar! “Oh no!” Not her cub! Please not her cub! Its loud, unbareingly loud! She races now, not caring about the others sleeping, “I knew I shouldn’t have left him! she thinks. But she is over taken by forest fairies. These magical fairies never sleep; they are protectors of the forest. They have full responsibility of all the creatures in there region. When they hear that roar, they buzz into action in a flurry of activity. The mama bear fears the worse! The rushing fairies only mean one thing, danger is near! As she moves aside to let them pass, she watches them, time slows, she see them flying in slow motion, as they twist and turn down the narrow tracks, she prays “not my den! Please not my den”.

They make a sharp and sudden turn, to the den next door.

The mama bear, out of breath, enters her den and rushes to her cub. He is fast asleep, the sound of his snoring brings absolute relief. She pats his head, curls around his little body and starts to hum his favorite song, knowing that even though he is asleep, when she gets to the “unawares” part, he’ll do a gentle little giggle:

If you go down to the woods today, you’re sure of a big surprise

If you go down in the woods today you’d better go in disguise

For every bear that ever there was will gather there for certain

Because today’s the day the Teddy Bears have their picnic!

Roadworks

What a strange feeling, staring at the flashing cursor, a blank white page, waiting for me to add words. This is supposed to be some sort of therapy apparently. As a tough weekend draws to a close, I think now is a good time to test the supposed therapeutic powers of writing.  I’m sure it does have a ‘weight-off-my-shoulders’ effect, however when that weight it so heavy and suffocating, I know that once I have inserted the final full stop at the end of this piece, I will probably have a moment of relief but like all moments, they last for just that, a moment.  However I figure that if I can share some of these moments, however brief they may last, then the purpose may be twofold. It will hopefully help get the words from the confused and nonsensical state in my head, to some form of sense on the page and relieve my heart of a little bit of burden. It also may echo readers thoughts, there maybe points of similarly or perhaps the opposite, it may provide a different outlook on things. But for whatever purpose this serves, if any, it will help formulate and track this phase of our journey.

Days are bittersweet. Behind the scenes we have been working like mad to get the Dream Chaser website up and running and finally after many tempting thoughts to allocate it to the “too-hard” pile, it’s live. Ryan and I were filled with a sense of pride as we now knew, that eyes, other than ours would be looking at it. It’s now tangible (as much as any virtual thing can be) and has catapulted our scribbled notes and thoughts from just ideas to reality.  However, it was also very daunting, it was real now, which only emphasizes the reasoning behind why this website even exists.  Many times I have thought, there’s no way I could possibly be up for running a child cancer charity. Especially when the thought of retreating back to a dark cave would be so much easier. But it has an addictive power. I’m sure many ‘hospital mums’ would agree, this, as in cancer, becomes our normal. What we once thought was normal, is now tainted with various degrees of abnormalness to it. Immersed in a medical world and stripped of routine, merging back into society has its challenges. Therefore we take comfort in other mums (and their families) experiences, happiness, achievements, and also their heartache, angst and despair. My point being, I still receive much strength from my hospital mums, they know the feeling, they don’t have to say “oh I can’t imagine what you’re going through” because they can. So if I have to carry on in life, function and contribute, then I choose to do this – run a child cancer charity. Yes the territory comes with many tears and much heartache but it also comes with great hope, and if nothing else, hope is the fuel that this charity runs on. Hope for a brighter future, as cliche as that sounds, its true! Hope is always the driving force, it’s what keeps parents going, it’s what makes the enormity of situations somehow manageable and hope is what makes it all worthwhile.

Anyway, what are my other options? Return to our old life? A life that seemed so secure, so taken for granted and mapped out. We were greatly mistaken in thinking we had control over any of it. It now seems like a lifetime ago. While I mourn deeply for the life we ‘should’ have had, nothing I can do will change the fact that we have ended up here. So shall I embrace that change?  Maybe I’ll draw upon some more well-known phrases, phrases that infuriate me and comfort me equally. “Everything happens for a reason”, “its fate/destiny/pre-planned (insert any fluffy word here).  These sayings are incredibly powerful – but are very context and time specific. When things are good, theses sayings are reassuring, comforting and make perfect sense. But when things take an unexpected turn for the worse, they transform from inspiring to cruel in an instant. Is it our fate that we have ended up here? Seems a little too romantic to me, but without the thought that there maybe some purpose behind all this, as hurtful as it seems at the moment, all thoughts return to the unfairness of it all, the “why us?” complex – and that is surely unproductive.

So for now, I will embrace what I can control and that is what I choose to put my energies into and the Dream Chaser is what I choose. Ill smile when it makes me smile and cry when it makes me cry.