When dreams become reality

It's a tryThis blog is meant to be about the ups and downs of parenting a child with a terminal illness and up until now it’s been all about the downs. Well this week, we had an up.

My completely football obsessed son received tickets from a generous sponsor, via the Starlight Children’s Foundation,  to the State of Origin – in a corporate box no less. For my international friends I will explain that the State of Origin is a series of three rugby league games played annually with the best players coming from different football clubs to represent their home state – it’s kind of a big deal.

Never have I seen Aidan so excited about anything. We received the call on the day before the game and quickly went out shopping to get him a jersey, some fake tattoos, some badges… the works. We could barely get him to sleep that night.

On game day we were blessed with good weather and a healthy, but overexcited, little boy and things just went up from there. The bus trip to the stadium, the crowd decked out in their team colours, the atmosphere, the entertainment, the packet of chips we bought him and, of course, the game – he loved every aspect of it.  He was shouting, dancing and hi-fiving everyone in the box. He was generally having the time of his life. He didn’t even cry as he usually does when we had to give him his medicines at half time. For that one night, he was invincible.

For me, it was one of those magical moments, the whole reason you become a parent in the first place. Just writing this now brings a tear to my eye and I wish I could relive the night over and over again.

Being the over thinker that I am, I must admit to feeling twinges of guilt. Having a child with a terminal illness has opened up so many opportunities to us. Aidan has seen and done things that most children his age have never had the chance to do. There is no way we could have afforded to take him to the game and I felt guilty about all the other children in the world who equally deserve these opportunities. But the night wasn’t about me and how I feel about charity, it was about Aidan.

It was 12.30am before Aidan finally came down from his high. Just six hours later we woke him up to take him to hospital. As I watched him get a blood transfusion, a dressing change and a needle, I was reminded of just how much he must endure as part of his condition and all feelings of guilt dissipated.

My gorgeous son doesn’t have it easy but thanks to so many supporters he can live an amazing and fulfilling life.


10 thoughts on “When dreams become reality

  1. I just loved reading your latest blog Kylie… So glad you all had a wonderful time & hope you have this time again for Game 3 with the best result of “NEW SOUTH WALES” claiming the title!!!! Love you guys!!! Bec, Shane, Madi, Michael & Dylan xoxox

  2. Cried as I read this. Tears of joy. It’s awesome that someone Aidan’s age can be so excited about sports–looking at all the pics you posted, it seems that the apple hasn’t fallen far from the tree! Thank you for sharing this experience. So happy for you all.

  3. I love reading your blogs Kyles!!!! I LOVE seeing your pics of Aidan on Facebook! You Anf and especially Aidan deserve to have all of the amazing opportunities you do! Enjoy every single one n stop feeling guilty when u are seeing Aidan so happy. He’s a tough little guy who leaves a lasting impression on everyone he meets xxx

  4. Kylie ,Aidan is lucky in all areas apart from terrible rituals he has to go through every day we all thank you & Anthony for being such wonderful caring parents that you both are .We are fortunate to have you as his parents & the joy that little boy brings to our lives & every person he comes in contact with no words can explain Love aunty Jill

  5. Hello Kylie! I want you to know I love your blog and how honest you are about what you feel-the good, the bad and the oh so ugly sometimes! I usually access FB from my phone and can’t always comment on links, so just know I read each entry and think of you. Ya know somethin’? Sometimes I get jealous of all the parents who can support each other like this! When Luke was diagnosed, FB was not in my vocabulary and Ellen Mollineaux was my only link to other Pearson’s kids. And trying to communicate between illnesses, hospitalizations and “life” was virtually impossible. But the jealousy doesn’t last long. I’m a reasonable person, really, who understands that’s just the way life is sometimes. So, thanks again for sharing, and helping all Pearson’s families. It really helps to know someone else is walking in your shoes. Maybe a different size and color, but they are shoes! -JoAnn

    • Thanks JoAnn. When Aidan was diagnosed it took me a long time to find the others. I remember googling everything i could about the disease and coming up with nothing except forvery outdated articles. It was the same with parenting a child with a terminal illness. There was lots of stuff on grief after the fact but not much on the day to day stuff. It really wasn’t until Aaron mobilised us and created a Facebook group that we were able to really connect. I imagine things will be even more different in 5-10 years time. My dream would be that one day all the information we currently share on Facebook will be recorded and used as a guide for parents and doctors to get a better understanding of Pearsons. Feel free to contribute any ideas for the blog!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s