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

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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

The guilt of imagining a life without him

Copyright: <a href='http://www.123rf.com/profile_wavebreakmediamicro'>wavebreakmediamicro / 123RF Stock Photo</a>I have a secret that I’m not very proud of, something that may shock a few people… every so often I would let myself dream about a life ‘post-Aidan’.

Don’t get me wrong, I never wanted him to die but occasionally I would think about what our life would be like without him.  I would imagine that ‘post-Aidan’ we might move to a new house – one that isn’t so close to the hospital, one that might have carpet or even stairs.  Perhaps we could take a holiday to somewhere other than Bear Cottage.  Maybe I could embark on a new career.

I sometimes hoped that ‘post-Aidan’, Anthony and I could have the life we dreamed of – you know, the one where we go camping and take the kids to sports on the weekends, like something out of a TV show. I imagined that would be our family, version 2.0. Continue reading

Crying wolf – sometimes it’s best to keep quiet

Photo by Nafrea via SXC

Photo by Nafrea via SXC

We all know the story of the boy who cried wolf – the more he cried out for help, the less people believed him.  That’s what it was like when Aidan was sick.

I’m yet to meet a terminally ill child who hasn’t had many close calls; times when their families were told to prepare for the worst but the worst didn’t eventuate. Don’t get me wrong, when your child doesn’t die it’s a huge relief, but at the same time it makes you feel like you are creating a drama over nothing. Continue reading

Maintaining friendships when your child is dying takes work

FriendsI’ve read a lot about and heard many parents talk about losing their friends following their child’s diagnosis.  Call me lucky, but my experience couldn’t be more different.

While I have also gained a whole new bunch of friends from this experience, I can say with absolute certainty that I have not lost a single friend since Aidan’s diagnosis.

So in today’s blog I want to talk about friendships and why some friends stick around and others don’t. Continue reading

Colds and parenting don’t mix

young female having a coldIt’s day 4 of my cold and frankly, like all parents, I don’t have time to be sick. There’s laundry to be done, dishes to be washed and nappies to be changed.

And like all working parents, I still have to go to work. Despite knowing I needed to rest, I hauled my butt to work today, not because I’m a superwoman, but because I need to save my sick days for the times when Aidan is in hospital. I also needed to prove to my boss that despite calling in sick to work more often than I’d like (at least once each time Aidan is in hospital), I truly am a hard and dedicated worker. I know I’m not alone in this. Other parents store up their sick days so they can stay home when their child is sick or so they can attend school sports carnivals or concerts every so often.  So we trudge on, infecting our colleagues and feeling guilty about it, all to save those precious sick days. Continue reading