Religion and the dying child

Photo by James Chan via SXC

Photo by James Chan via SXC

Since I started this blog I’ve skirted around the topic of religion. It’s something people often have very strong and opposing opinions on and I don’t want alienate anyone either way. Except that, when you have a terminally ill child, there is no way of skirting around religion. Your faith and the faith of others is simply unavoidable.

No matter where you stand on religion, it’s hard to avoid in a hospital setting. Bedside visits from hospital chaplains; local church groups giving presents at Christmas; friends, family and random strangers offering to pray for you; gifts of rosary beads and religious tokens – it’s all part and parcel of having a sick child. Continue reading


Reflecting on a year of change

Farewell 2014Some years come and go with barely a ripple but for Anthony and I,  2014 was a year of extreme highs and extreme lows and was certainly one year that will be forever  etched in our minds.

In January we welcomed a healthy, albeit premmie, baby into our world and began discovering a whole new way of parenting – one that doesn’t involve therapists, medication and tube feeding. Continue reading

How one day can mean so much

Christmas 2014As many of my long-time readers know, I have always loved Christmas. I love the songs, the buzz in the shops, carols by candlelight, houses decorated with lights, Christmas trees and decorations, the sense of community in the air…it truly is a magical time of year. Thankfully, my enthusiasm rubbed off on Aidan who also embraced the holiday season with vigour and last year was one of our best Christmases to date. Yet for the last six years, Christmas has also been bittersweet. Continue reading

Be alert, don’t be alarmed

Investigate moleI was changing Ollie’s nappy the other day and I noticed a red mark on his chest. When I immediately wondered if it was petechiae, I realised just how ingrained my medical alertness had become.

In medical speak, petechiae are little red dots caused when bleeding occurs under the skin. For us, they were the first sign Aidan was low on platelets and one of many things we had to be on the lookout for during Aidan’s life. Continue reading

The silver lining of hospital life


There have been a number of children with Pearson Syndrome in hospital lately and following their journeys on Facebook reminded me about the many hours I spent with Aidan by his bedside.

While I don’t envy their parents for the stress, the lack of sleep, lack of privacy and all the other horrible hospital associations, I can’t help but think about all the magical times we had in hospital.

They say there’s always a silver lining and even in the worst of times, I could find it. Continue reading

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