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

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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

Tiger

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

When push comes to shove…it’s time to act on discipline

Behaviour chartOn receiving Aidan’s school report card this week, it appears that discipline is well and truly back on the agenda.

I’ve talked about discipline in the past (see When ‘no’ is the hardest word) and my fears about Aidan turning into another bratty, sick kid. Yet despite a concerted effort this year, Aidan continues to struggle with rules and it appears more needs to be done. Continue reading