The Dad Of The Girl With One Eyelash.

Stay strong! Stay Strong! STAY STRONG!!! Well sorry to all those who think this is what I HAVE to do. Right now I can not Stay Strong! Nor can I be strong. If you think I should then you best stop reading now to avoid disappointment.

Some say we need to share our feelings and some say don’t air your dirty laundry. Well this is my blog and although it is supposed to have stories about my children or my work, this one is just about me and I feel bloody horrible writing it.

It is weird, the new interest in my blog that I started about 3 years ago and due to being a lazy arsehole stopped half a year later. Then 10 months later did one more blog and then two and a bit year gap before I started sharing the journey of Hayley. Then my 4th blog back in, about Hayley’s Eyelashes returning, has received more interest and views than all my other blogs combined. It has even been quoted across the world in online articles.

Early to mid 2016 I mentioned to my wife Leia that I was completely exhausted and had lost all motivation. I could not remember ever being that tired, at least, not constantly. Then June 2016, still tired followed by Hayley’s diagnosis. To think I whinged and sooked about tiredness then. I had no idea. My wife and I taking it in turns spending the night on the couch in the corner of Hayley’s hospital room with the occasional night sleeping on the armchair in the emergency department as there were no spare beds in the hospital for Hayley. These armchairs could stretch out/unfold to make a very narrow bed for such an occasion. If I laid on my side, I would wake from the pain in my hip from the lack of flexibility in the bed. If I laid on my back I had to tuck my thumbs into my pockets so my arms wouldn’t fall off the sides. The emergency department also has no window and looks exactly the same middle of the day to middle of the night. All the lights on full while dozens of people in uniforms running around, answering every call and beep and ring and scream. My heart goes out to these guys as I watch babies, too young to say where it hurts to teenagers with police escorts and everything in between. Some things can never be unseen.

But the main thing I saw was this:-

On 6th January 2016 I filmed my healthy 6 year old Hayley running along side her big sister Natalie on a flying fox as a race.

Then six months later on 6th July this photo:-

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How the world can turn. Then six months later again on the 6th January 2017.

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Then February 2017, back at school. Hasn’t missed a day yet and getting stronger. So full of energy and cheek that big sister Natalie had to hold her still for the uniform photo. People are constantly stopping us to say how well she looks. It was a big day recently when we got her back up to her starting weight. On admission on 18th June 2016, Hayley weighed in at 19.1kg. Well within the healthy range but over the following week of tests, procedures, some days of fasting, etc. she dropped a whole kilogram. Now if I was to drop a kilogram no one would see the difference but the starting point is  a lot different. Hayley’s weight dropped and raised many times but we never got it back up over 18.4kg. In fact, a couple of times she got down to 16.8kg. She lost so much weight that I barely recognised my little girl. But Monday this week, at The Royal Children’s Hospital for treatment, she weighed in at 20.3kg. She is moving better, looking better and overall, just better.

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Hayley is going from strength to strength. Getting stronger, faster, funnier and much more confident than ever before. From super shy to having conversations with adults. So why am I now such a mess. Why do I constantly feel like crying or screaming. I actually watched Hayley run a little bit a couple of days ago and the tears started. With every good thing that happens, I’m a mess. At the first sign that something isn’t right I’m immediately in panic mode. When it becomes a false alarm which is more often than not at the moment, the tears start again and mentally I am back in June, just been given the news again. I don’t know how to shake this. I am constantly on edge. Angry, sad, snapping, overreacting and I don’t know how to stop. I feel I should be celebrating these incredible moments but find my hands shaking instead. Every day we can see more and more hair on Hayley’s head and eyebrows and eyelashes. Even the fine little hairs on her arms got her all excited. I also have 2 other children here in this house who need my help and attention and at the moment I am not much good to them either.

At the start of this Hayley journey I put my acting and stand up comedy careers on hold. I said that as soon as all this was over then I will be back, stronger than ever. Well it is not over like a thought it would be. The 12 month maintenance came as a surprise. But this more gentle chemotherapy treatment can easily be worked around. But I just can’t get myself motivated, or active in any direction. I know I need to get in better shape but I can’t bring myself to walk out the front door, let alone walk around the block. My 15 year old son is having some schooling problems and my answer to him was that sometimes life gives us stuff that we don’t want to do and we just have to do it anyway. What a hypocrite. But I don’t have any other answers for him either.

I have even accepted a couple of extra shifts recently in the paint shop. I know I need the money but I didn’t need the guilt. It was a quiet day and the brain wasn’t on my side. I was wandering aimlessly and zombielike between customers. I know there is always something to do and I managed to make one of my 5-10 minute jobs take nearly an hour (we have a couple of people there who manage this every day, lol). The one thing I do know that I did well was to have the expression and walk of someone heading to do something important and full of purpose every time the boss walked past. Just hoping he wouldn’t stop me to ask what it was I was doing.

Anyway. That’s enough from this sook this week. I will be back to the thank you’s next week.

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