5 reasons why stories of ‘miracles’ suck

Copyright: michaeljung / 123RF Stock PhotoScanning the internet this week it’s been hard to avoid the story of Brittany Maynard who chose to take her own life rather than wait for her terminal brain cancer to take it for her. It’s an issue many people feel passionately about one way or the other. For me, it wasn’t Brittany’s story that stirred up emotions, it was the one about a man who was diagnosed with the ‘same’ brain cancer but had gone on to live for another 13 years. Continue reading

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Letting go of the life raft

Lost at seaYesterday I received the news that Aidan’s primary doctor is going on leave to travel around Australia for a year or longer.

It was something she had mentioned last year but I told myself not to worry about it, that it would be a blessing if Aidan was still here when she left. But now the reality has hit and I’m both terrified and sad. Continue reading

Is it exploitation?

Photo courtesy of Mike Coombs via SXC

Photo courtesy of Mike Coombs via SXC

I was approached last week by Aidan’s palliative care team to see if we would be interested in talking to the producer of a news program about our story. As always, when asked if we would be willing to participate in media, I agreed.

Over the years, Aidan has done a few media stories for varying reasons – to raise awareness of his disease, to ask for blood donors, or to encourage people to donate to various organisations. I have little problem with this, but it does beg the question, is it exploitation?

As an avid viewer of documentaries, I understand society’s need to learn about other people and, as bad as it sounds, I admit to enjoying reading stories in newspapers and magazines about people who have had tragic things happen to them. Continue reading

Unexpected friends

Toddler Boy Listening To Nurse's Heart

Anthony and I attended a fundraiser on Friday night for the ward where Aidan receives his weekly platelet transfusions. It was a fun night filled with plenty of laughter and it made me realise just how much Aidan’s nursing staff and medical team are a part of our lives.

From the age of 8 months, Aidan attended this ward every month for a blood transfusion and then about 2 years ago, we began attending weekly for platelet transfusions as well as the extra day a month for the blood transfusions.

We see these people more than we see some of our own family and friends. They have become such a pivotal part of our lives that I suddenly wondered what would happen when we no longer had reason to see them. Continue reading

If I had the choice?

Photo by CarlyMarie of carlymarieprojectheal.com

Photo by CarlyMarie of carlymarieprojectheal.com

There’s a quote that did the rounds on Facebook recently for parents who have lost a child – it simply says “I would still choose you” and it got me thinking. Would I still choose Aidan if I had the opportunity?

At the risk of causing a major uproar and being bombarded with hate mail, I really don’t know if I would. It honestly depends on what day you ask me.

Aidan is the most amazing little boy and I love his strong and funny personality. In fact, like all parents, I wonder if I could ever love another child as much. He has certainly taught me more about life in his five years than in the 29 years prior to his birth, but if given the choice who wouldn’t take the easy option? I understand that there are people who love to push themselves and climb the world’s biggest mountains but, while I’m not afraid of hard work, if there was an option to take a helicopter to the summit, I’d probably take it. Looking after a sick child is physically, financially and above all, emotionally draining. Continue reading

Feeling the sorrow across the miles

Photo by Henkster via SXC

Photo by Henkster via SXC

It was during lunchtime at work, sitting alone in the tea room that I decided to quickly check Facebook on my phone. It was then that it happened. Whack! Like someone hitting me in the stomach. My chest tightened and I immediately felt like I was going to vomit.

The status update began with, “Today heaven received the most beautiful loving angel it will ever see.” A beautiful little girl, who I had been following for weeks and months, had lost her battle with Pearsons Syndrome.  She had fought hard in recent weeks, her mum posting pictures of her smiling face, painted nails and middle of the night tea parties.  She was an example of how resilient children are in the face of adversity and I felt utterly gutted at the thought of her gone.

For the rest of the day I struggled to keep it together. It probably seems odd to be so distressed over the death of a child I had never met but as with all children who have been burdened with the same disease as Aidan I feel a connection to them and their families in a way that others may never understand. Continue reading

Whatever you do, don’t use the ‘D’ word – terminology of dying.

Terminology for dyingDid you know there are over 200 euphemisms for death in the English language?

Whenever we go out it is inevitable that some stranger will approach us and ask, “what’s wrong with him?” Talking about how angry and upsetting this makes me is enough fodder for another blog (heck, it’s enough material for an entire book). But today, I want to talk about terminology. Continue reading