Reality bites

NRL grand finalWe have periods of time where Aidan’s disease doesn’t really impact on our everyday life and then there are other times, like the weekend just been, when it’s hard to ignore he is a sick child.

On Saturday, Aidan and I went with our dear friends to the Playschool concert. He was having such a good time, singing and dancing along that it didn’t matter that he was 5 and the other kids were 2-3 years of age. He was just enjoying being in the moment and I was enjoying having a ‘normal’ child. However, at the end of the concert we went down to meet the hosts. With his feeding tube in his nose, it’s hard to pretend he is just like any other kid and of course, we were immediately asked what was wrong with him.

This followed by him getting a free signed teddy bear from the hosts and more attention than I would have liked. While I was upset that he got singled out, I pushed my own feelings aside as he immediately fell in love with the teddy bear and has hardly left it out of his sight since.

Then Sunday came along, the day we had been waiting for all year. It was the NRL Grand Final and he had talked about nothing else all week. Despite it costing a fortune (thankfully some family and friends helped pay for the tickets as part of his birthday present), we decided to go because last year’s grand final was, honestly, the best day of his life. I should have known that great moments can never be relived but as always we wanted one more magical day with our son, one more day of precious memories that we could cherish for life. Sadly, Aidan’s disease did not allow this to happen.

It was an unseasonably warm day of 32°C (90°F) and despite our best efforts, Aidan just wilted before our eyes. The day was spent shuffling him from one shady spot to another. When we eventually took our seats in the stadium, despite being out of the sun, the heat was still taking its toll on him. Some kind strangers handed us cups of ice which I rubbed all over him to try and cool him down but to no avail. We contemplated going home and forfeiting the $450 it cost for us to go but I told myself that he would be all right and would eventually perk up once it cooled down. I wanted so badly for him to have a good time.

Unfortunately, it wasn’t to be. Half way through the second half Aidan fell asleep in my arms. He was struggling and it was heart breaking to watch. The crowds around us were cheering while I was fighting back tears. I’m sure another piece of my heart broke that night. At the end of the game, we ventured out of the stadium and the fresh air seemed to work. He came back to life and the Aidan we know and love re-emerged but the damage had been done. The reality of his disease had hit us like a tonne of bricks.

With summer well and truly on the way, we know the next few months will see us locking ourselves away in air conditioning and like vampires, only emerging on those rare cool nights to get him some fresh air.

There are times when I truly hate that he is singled out for being different but then days like Sunday remind me that he truly deserves all the attention and special privileges he gets because while most Australian children will spend the next few months enjoying the summer at the park and the beach, Aidan will be largely shut off from the outside world despite desperately wanting to go swimming. No amount of special attention can change his reality.


3 thoughts on “Reality bites

  1. Heartbreakingly honest and beautifully written as always. Thanks for being brave enough to share your experiences and feelings so we can all have an inside view into Aidan’s world (and yours too). A number of my friends and family have been following your blog too – Aidan’s cheer squad is even bigger than you could ever know. xx

  2. Your honesty in such a tough situation is amazing Kylie. You are helping so many other people with terminally ill or sick children. You are such an inspiration hon. I wish we could all be so honest with our feelings, feelings we are often to scared to share. BTW Toby loves Playschool and was desperate to go to the show but I completely forgot to book tickets. One day Toby’s all about the big boy TV shows any other days he is happy with play school, peppa, the wiggles etc.

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