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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Ignorance is bliss

Photo by Colin Cochrane via SXC

Photo by Colin Cochrane via SXC

I’ve been having trouble thinking of what to write for my latest blog post. Not because I have ran out of things to talk about (those that know me will know that never happens), but because I’m blissfully living in a state of denial.

It’s been three months since our last hospitalisation, the Department of Education rang me to talk about Aidan’s schooling next year and his birthday is in three days. It’s the first time in a long time we can actually contemplate his future. Continue reading

Another baby? Is it wise?

Photo by achinel, SXC

Photo by achinel, SXC

For the last 3 years my husband and I have been thrashing this topic around – to have another baby or to not have another baby. I have read numerous books on the subject and spoken to many, many mothers of terminally ill children who have done just that. They all say the same thing; it’s incredibly hard but definitely worth it. The question is do we take the plunge.

SIDS and Kids has a 48 page document on this very subject so this could be the longest blog post ever but I’ll try and keep it short. Here is my own list of pros and cons about whether Anthony and I should have another baby or not. The list will be different for everyone but perhaps there is some common ground. 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

Top 10 things never to say to a parent of a terminally ill child.

Most successful blog posts seem to start with a top 5 or top 10 list…. Five ways to sell your home sooner, Ten best dating tips, Five must have fashion items, etc, etc

Well here is mine… ten things never to say to a parent of a terminally ill child…

  1. God never gives anyone more than they can handleummm have you seen me lately??? Clearly, I’m not handling this!
  2. Everything happens for a reasonthis may well be true but right now that doesn’t help me sleep at night or make hospital stays any more fun. Continue reading