This is all so frustrating. I feel so powerless. Trying to navigate through a system with no structure, to find answers to questions I don’t know, to find a normal where there’s no parameters, feeling helpless and isolated in a crowded world.
It’s hard to believe we have Dylan’s three month check up coming up, exactly a year after his first visit to the doctor, with symptoms of headaches and vomiting, really thinking nothing serious was wrong. The first thing the doctor had said when seeing Dylan was “maybe his fringe is too long” , you know maybe his hair was in his face making him get headaches….. Boy was that far from the reality.
Just a quick update. The time just seems to fly by.
Three months ago, Dylan still in hospital having transfusions, on TPN feeds, still
struggling to recover from chemotherapy and my dad dying, it was quite a horrendous time. Continue reading “Life”→
Six months ago, brain surgery had been done and dusted, 30 sessions of radiation had been completed and this was the time to recover and to prep for chemotherapy. They tell you that it’s a few weeks break in between treatment. However it’s not really a break. During this time Dylan required a number of test and procedures, including two separate surgeries, one being insertion of a double port and the other being the insertion of a PEG (Percutaneous Endoscopic Gastrostomy) – an abdominal feeding tube. Continue reading “Another Layer”→
Our lift patiently waited for us while Dylan finished vomiting this morning. He was that determined to go to RELAY FOR LIFE. It was a very last minute decision, yesterday a friend called me and told me all about it, I mentioned it to Dylan and he was keen, pending how he felt that morning. So with no real plans and not much knowledge of what we were really getting ourselves into we jumped in, and I’m so glad we did.
We did end up staying a little longer than planned, originally it was only for the first lap, but we met some great people, and were enjoying the fresh air and the awesome atmosphere that comes with being surrounded by groups with the same mission, and Dylan even got to enjoy a couple of laps in a wheelchair with Lara. Continue reading “I couldn’t be prouder”→
Last night as I held the vomit bag in front of Dylan’s mouth, tissues in my other hand, simultaneously cradling his head on my belly, for the second time that day, I thought about the vast contrasts in this journey. He is better yet still sick. In fact he is in worse shape than he was a year ago, and if truth be told a year ago if left untreated he would of most likely been dead today, if not dead most definitely been in a much worse reality.
“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 ……”
Currently I am 30 thousand feet somewhere over Australia sipping on a cool glass of peach and coconut water, ok it’s a recyclable plastic cup but it’s pretty sweet being served while I watch a new release movie… Doctor Strange is on the menu at the moment. And talking of menus there’s a pretty interesting selection of eats to choose from…. Yip I’m living the life.
It was still dark outside when I woke this morning…. Well I hadn’t really slept but at least I had some rest. As the light began to slowly perforate the dark sky I gently woke the boys and as the sun rose we got ready to leave.
My bags packed. I was ready to go. My mother heart already missing my forever babies.
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”→
I had a little meltdown this morning when the dietician and TPN nurse came to talk about the nutrition plan for Dylan.
It’s not a new feeling, the slow build up of emotions, bubbling just below the surface, the heavy tightening of my chest, the solid lump in my throat, then the swelling pools of tears forming in my eyes and poof it all comes undone. Continue reading “Sifting through the feeling”→