Two years ago today, was the first of many MRIs that Dylan has had. Although the results were not at all expected and completely shocking I am grateful every day that he had that first mri, the one that eventually led us here, past surgeries, radiation, chemotherapy, a multitude of test, procedures and medications to NED (no evidence of disease).Continue reading “Reflection ~ 2 years”→
Another 21 children’s stories have been shared, just the barebones of their experiences, a snippet of their journey, barely scratching the surface of what childhood cancer is.
It’s truly been a soul searching experience for me personally, I’ve cried almost daily, questioned myself and my intentions, felt angered and frustrated, as well as honored and humbled. I questioned my beliefs and wondered about hope. I experienced disappointment, I’ve felt like it was a battle that could never be won. I have learnt to persevere, beyond myself for something that is more about others and less about me.
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. Continue reading “Journal Entry – Fear”→
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.
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.
“It’s been an honor Dad.
Today we are Celebrating a life well lived
He was loud
Funny and friendly
He was so loved
And he will be very fondly remembered.
Generous, a joker and so helpful, he accepted you as is ……”
We huddle tightly below deck, while the ferocity of the storm rips relentlessly at our vessel. Battered continuously, whipped around like a rag doll there’s little we can do. Our control swept right from under us we are left clinging on to one another. Then, just as suddenly as this all began, there’s a break in the clouds, there’s an uneasy calm, an almost sickening stillness. We are left bobbing in a very vast ocean, quite unsure of any direction.
The few things that keep us afloat during the brutality of this …. Limitless courage, unconditional acceptance, surrendered trust, total presence, and of course love. These things remain with us. Continue reading “Today”→
Hate is such a strong word … One I don’t like to use … But seriously … I absolutely hate that my normal is supporting my son while he vomits, I hate that he is so critically thin, that the treatments I sign him up for damage parts of his delicate body, I hate that I am so helpless and I hate that I am angry.
I am so exhausted.
I hate feeling this aching in my chest.
Fuck cancer !
I love being honest.