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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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

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

Do all roads lead to divorce after the loss of a child?

Michal Zacharzewski, SXC

Photo courtesy of Michal Zacharzewski, SXC

I’m not one to air my dirty laundry in public but it goes without saying that Aidan’s diagnosis has certainly put a strain on my marriage.

We all know that relationships are hard work, so when I read somewhere that 80% of marriages break down after the death of a child, I figured why even bother trying when the numbers are stacked against us. On chatting with the palliative care social worker, it was brought to my attention that perhaps 80% wasn’t the actual figure (I admit that as a glass half empty kind of girl I may have imagined this figure) so I went hunting for the truth. 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