Aware

This week as we attended to Dylan’s post treatment scans and tests we were reminded of the tragic reality of this horrific disease. Two mothers held their little heroic boys in their arms as they said their last goodbyes, allowing the whisper of their last breath to be released in the comfort of their mothers loving arms. Both boys courageously endured very harsh medical treatments, while still living fully sharing their energy and joy to all those around them. Their lives weaved with challenges that many others never experience, their impact on the world around them significant and permanent.

Radiation Therapy

“THE MASK… we had radiation planning today (28/6/2016), Dylan has a custom made ‘bed’ and a super freaky mask that will help hold him in position during his radiation treatments. Seriously I am honored to be traveling this life with this kid, not a single complaint or moan, he’s just doing what needs to be done to get well, the kids got tenacity and totally rocking this journey!!! ”

      

Radiation – I’ve been skirting around this topic for a couple of weeks now. I wasn’t quite sure how to put the experience into words. It was worse than we imagined. It made the diagnoses real. The long term side effects are frightening….. Maybe these are the reason I found it difficult to write about it.

Reflection

30 sessions of radiation, 5 days a week for 6 weeks, it was grueling.

“19 July 2016

What can I say, it’s been tough.

Today as our eyes ‘leaked’ Dylan and I discussed how weird we felt. 

Shoot the Messenger

Sometimes it’s not the message but the way it is delivered that is painful.

So as you may know not all tumors are malignant (cancer), so when you have a tumor removed it is tested to see whether or not it is malignant. Obviously the results dictate much of how your forward journey into treatment will unfold. In my view, the way this news, your results are delivered to you is pretty important.

Reaching out

I so often read those ‘copy me and share’ Facebook posts about being available to help, about reaching out for help. I wonder how much weight is in that, I wonder how many people reach out when they need to. I know I struggled to ask for help, and so often I go to an auto response of ‘great thanks, how are you’. I rarely do that now days. I’m much more raw, naked and open … It’s not hard to know how I am feeling if you ask. It was Dylan’s challenging health journey that tipped me over the edge.

When worlds crumble

That Monday, a year ago, while I sat patiently waiting for Dylan to finish having the MRI cancer was the furthest thing from my mind. It wasn’t long that our entire world was left in uncertainty and disarray. An hour or so to be precise. 

Journal Entry – Fear

16 May 2017
Wide eyed and rapid breath, backed up into a corner. Like an animal trapped fearing for its life, that’s what I’ve been feeling like. I woke up this morning to an answer, finally. It’s been fear that’s been my constant companion, lurking in the shadows, unseen and unheard, but leading my every thought, feeling and decision.

Journal entry – Between the space

11 May 2017

Today I am grateful for those who have witnessed my truth, encouraged my authenticity and supported my vulnerability. Those who acknowledge others journeys no matter how rough and tumbled it may be are what I am grateful for. And I am grateful for the experiences which have allowed for my unraveling to open to more love and more empathy. 

Journal Entry – Struggle

9 May 2017

My heart is pounding, I feel flustered, I’m swallowed by anxiety and drowning in desperation, my breathing is rapid, I’m struggling to open my eyes. Surrounded in stillness I gaze into the darkness, my eyes now open pooling with tears, my breath calms as I become fully awake, I realize it was just a nightmare as my mind flips through the scenes, I feel it on a whole other level, this time more real, as my heart begins to ache.

Journal Entry – Fleeting moments

28 April 2017

I didn’t sleep well last night, my mind possessed by thoughts of the past years journey. Images of incredible moments, some swaddled in pain and others swollen with pride. So many diverse emotions, some feelings of utter helplessness and others feelings of deep appreciation. Much I thought I knew, reshaped, released or reviewed.

Just fleeting moments in the average life,