Thursday, 20 October 2011

Noah is my hero (Aaron's funeral talk)

You’ve heard from the three strong members of the family and now you will hear from the blubbering mess, which is me.  Today is really not a day to mourn, today is a day to celebrate. I say that but in a minute I’ll be blubbering, but it’s a day to celebrate Noah’s life.  

Saturday was the worst day that I have ever experienced and will ever experience in my life. To me it was the worst day ever.  To Noah it was the most glorious day, because he was finally free. He could run, skip, jump, even sidestep and that is all you want for your children – is to be happy. He is finally at peace and he is finally happy.

The last ten years have been devoted by Lisa and I and the boys to looking after our monkey.   It wasn’t the life that we were given, it was the life that we chose.  It wasn’t because we had to do it, it was because we wanted to do it and we loved every solitary second of it.

At times it was hard, but it was never a burden. There were times when we couldn’t go places that we really wanted to go.  But we never complained and just thought Noah can’t go there and we’ll just go another day when Noah is home with his carer. Whenever we did go away without Noah, inside me there was a little bit of pain because I felt bad because he wasn’t with us, because I never fully felt complete without all the boys there.  When he was in hospital I think there was only one night in ten years that he stayed in hospital at night without Lisa or I - not because we didn’t trust the nurses or anyone else, we just wanted to be there with him.  

Over the years we’ve always had routines that we knew our day was run by what we had to do. At certain times of the day we had to get things done.  We always knew our bedtime was around 9.30 or 10 because would get Noah to do his business and then get him changed and I’d carry him to bed, and then go off to bed. The last few nights we haven’t been to bed before 12 oclock so Noah, your Mum and Dad have turned into dirty stop ups!

Whenever you were around Noah there was one thing you always felt, and that was love. The moment you looked into those big brown eyes and rubbed your fingers through his hair you were hooked for life.  Teenage girls, older women, you walk through those doors at church and they were all over him like a rash.  It’s pleasing to know that he’s actually going to be buried with Annette Clarke’s lipstick on his forehead, because every Sunday that is what there would be.  She would give him a big kiss and he would be wheeled around for the next three hours with a big chunk of lipstick on his head.

Through the last week I have had to go through Lisa’s photos – our photos for the slideshow you saw out there.  At times it was hard, not because I felt sad, but because Lisa has taken 167,000 photos!  But while I went through those photos, not once did I cry, not once did I feel bad. I sat there with a big smile on my face thinking ‘oh look at our monkey’ because of the joy I got from 10 years of service to Noah.

Noah defined our family. Noah was our family. His wheelchair was like a badge of honour. Whenever we went out and about, we felt two foot taller because we were with Noah.  We always felt safe and we always felt love.  Not once did I walk through the mall feeling embarrassed or ashamed. I always felt ‘this is my son and this is who I am’.

When you look at Lisa’s blog you always see five sets of legs and a wheelchair. And that is us and I’ve already told her I’m retired from blog headers because if Noah’s wheelchair is not there, my legs aren’t going to be there, because without the wheelchair that is not us.

Some of you may already know that Noah was a bit of a rock star.  Whenever I would walk in somewhere with him there were teenage girls rubbing him, wanting to be near him.  The Young Men or boys would rub his hands and talk to him, but the thing was that they would always be talking to Noah and about five minutes later I’d still be standing there and they’d look up and I’d go ‘Hi!’ but it didn’t worry me because I knew that as you can see today by the people here, how special Noah was to them.

In our family there has always been a few things that people know.  Number 1 is that everyone knows that I’m not the boss of the family, but the misconception has been that for the last ten years that Lisa has been the boss of our family. But everyone has been wrong because the boss of our family for the last ten years has been Noah.

Whatever Noah wanted, Noah got. However Noah felt, we felt. He was the barometer for our day. Noah was also very spoilt.  Noah never got into trouble.  One of the other boys would knock over a glass and make a mess and we would say ‘Jalen! Harrison!! Why did you do that!?’.  Noah would poo all over the floor and we would say ‘Nooooah!’.  Or if Noah had knocked a glass over we would say ‘Noah what did you do that for?’ and then ‘who put that glass there!!”. So he was always the good child.

The most special times I think I ever had was giving Noah a cuddle. He had this way of just letting you know that how content he was, whether it be licking his lips or it be a sigh, but I remember back in the 2008 Olympics I think every single night I would lie next to Noah on his pillow, hop under his blanket and we would discuss how the Olympics were going. 

Another times I’ve had with Noah that probably weren’t so good when we went to the movies or a theatre or somewhere like that, and for some reason the wheelchair couldn’t sit with us so Noah would plop himself on my lap.  Unless you’ve had a 40 kg bag of wheat sitting on your lap for an hour and a half, as nice as he is to cuddle and as nice as he is to feel Noah next to your legs, you cant feel anything for a couple of days but I’d have it back anytime.

Noah has been given hundreds of nicknames over the years. I don’t think he’s ever been called Noah.  It ranged from things like ‘gorgeous’ to ‘gorgy’ to ‘gorgy pants’, ‘spunky bum’, ‘cheeky chops’, ‘chubby chops’, ‘bubba lubba’ (don’t know where that one came from) but there was always one that always defined the person Noah was and that was ‘cheeky monkey’.  You might say ‘how can Noah be cheeky?’, well whenever you saw that big toothy grin and saw those eyes you knew he was the cheekiest of the King boys, and if you know that King boys, that’s pretty cheeky!

But how did he get that nickname?  When he was young, about two he used to go to Munford Street Early Learning and his teacher Cheryl used to come and do home visits. The thing was that Noah used to be revved up and have these bells and he would be would be playing under his bells, kicking his legs, waving his arms, and making a noise and there would be a knock at the door and it would be Cheryl.

We would say ‘hello Cheryl’ and she would say ‘hello!’ and as soon as he heard hello the kicking stopped! She would come in and Noah would be asleep under his bells! Cheryl would work on him for about fifteen minutes, and then his little eyes would open a little bit and ‘oh no she’s still here’ and she would still do her thing with his eyes shut, and then half an hour later she would go and say ‘see you later’ and we would shut the door and would go back in and Noah’s eyes would be wide open, legs kicking.  That would happen every single week so he was very, very cheeky.

I was going to tell some other stories, and it’s alright to laugh at them as I’m the butt of all the jokes, butt being the operative word.  One year we were fortunate enough to travel to Newcastle to visit a girl called Grace who suffered from the same condition as Noah.  Two days before I had bought a new pair of suede sneakers, so I was feeling pretty fresh.  We walked into the house and I was standing there holding Noah as he was a lot smaller and I heard this ‘drip, drip, drip’. I thought ‘what’s that?’ and I looked down to my left foot and on the toe was this massive brown sloppy poo. I thought ‘oh no – my new shoes!’. Then Lisa goes ‘I’ll take him’ and took him and I looked down ‘oh my shirt! Oh my jeans!’. One thing I hate is wearing other people’s clothes, but if you know me I wear my shorts way past my knee, and these shorts were above my knee. I’m sure Noah was laughing at me, but it was a long afternoon.

Every afternoon Noah has to have certain meds to help him use his bowels, and Noah’s carer Di would give him those and give him a shower and get him nice in his PJs and Mum would say ‘I’m going out for tea with the girls’, and I was thinking ‘this will be fun.  I can do whatever I want with the boys, I can watch sport’, but that is what I had thought. They had sucked me into their plan. So after about an hour I would lying there and would have a chat with him and sit down to watch my movie, and I smell something and think ‘he’s done a number two’ and I would look and it wasn’t in his nappy but it was all up his back, all through his PJs and I thought ‘there goes my night’. 

If you have ever tried to get pyjamas off when someone has done something like that, it goes everywhere! I would strip him off, wipe it all up, get him into the shower, wash him down, get him out of the shower and who would walk through the door – Mum! It didn’t happen once, it happened numerous times.

Noah was also like a regular boy for his age. You know when they sit in the back going ‘are we there yet? Can we home yet?’. On numerous occasions we’d be out for long periods, stopping at different places, we’d get Noah out and he would just start, yelling, moaning and complaining and we’d say we’ve just got one more stop and he would yell and complain all through that.  He’d yell and complain all the way home, and we’d say ‘we’re almost home Noah’, but would you believe that the minute we pulled into the drive, we didn’t have to say anything, and it all stopped. He knew exactly what he wanted.

Lisa mentioned the hospital staff, and I wanted to share some of the stories that she didn’t share.  We were so blessed to have some wonderful staff to look after Noah and also us. Some staff would feed us more than enough - smuggling cans of drink, icecreams, biscuits but it only seemed to happen on the nights that Lisa stayed.  We had clown doctors, not actual clown doctors but nurses who dressed up as clowns just for fun.  We always seemed to go home with more supplies than we possibly needed.  If things went missing on 4K it wasn’t me, it was his Mum!

The hospital staff also had a sense of humour by putting up Sydney Swans colours up when Sydney beat Hawthorn, but then the day of the preliminary final they put up Hawthorn posters in his room.

We were fortunate to take Noah to Kings Meadows High School a number of times for Child Studies, and many of the students even though they had only met him for 45 mins to an hour once, were so touched and influenced that the messages I’ve gotten throughout this week have been so touching. One student wrote this to me ‘I got to meet him a few times and Noah is the reason why I’m currently studying working with children.  I just want you and your family to know that even though I was a young teenager who didn’t know where life would take me, both you and Noah touched my heart’.

I know in my science classes when I would talk about the human body I would talk about Noah and it was the only time my science class was dead silent, which is pretty bad considering my principal is in the room today. The whole room would change as soon as I would start to talk about Noah.

Noah also had the great opportunity to meet many famous people.  Yes they all wore brown and gold. Noah had the opportunity that most kids only dream of – to be that close to football players.  Was Noah impressed…No!  He would lick his lips, roll his eyes and go to sleep.  Noah also had this knack - if Noah ever got out of hospital the day Hawthorn played, they lost. I guess I couldn’t have so much joy in one day. It didn’t happen once – it happened five/six times.  

Which brings me to the 2008 preliminary final, which the week before he was in hospital all week and and he was starting to get better, and better and it got to the preliminary final game and there was talk about Noah going home, so I started to sweat and thought ‘oh we’re a gonna!’. But luckily they kept him in for one more night – I had nothing to do with it, and the rest is history.

Noah shared our bedroom for eight years.  He actually started invading it a lot earlier. He started to come into our bed.  If you can imagine two grown adults and Noah in our bed, there is not a lot of room.  Somehow I ended up on the floor. I still have fond memories of one night when Lisa went out – did she ever stay home – I don’t know!? When Harri was born. Noah was upset and crying, Harri was upset and crying and I’m lying on the floor in our bedroom on a mattress with Noah in this arm going like this, and Harri in this arm going like this (rocking) as I’m waiting for one of them to stop crying.

Once Noah moved into our room he got into the habit for about a year of ‘I’m not going to sleep until you rock me for 45 minutes’, and when you are in a single bed rocking him and rocking him and thinking ‘come on Noah’ and he finally falls asleep, he was heavy and my arm was stuck.  I don’t know how many times Lisa walked in and I’m hanging out of the bed trying not to wake him up. Then eventually we just thought we would move him into our room, but as much as we loved having him in our room it was like sleeping in the room with Darth Vadar.  As much as I love Star Wars, it’s a passion killer.

But by the end of it after 8 years, hearing him breath in our room was the most relaxing, peaceful time.  This last week has been that quiet and horrible if we could just have it back for one night, to hear him and that’s how we knew if we were going to get a good night rest (or that’s what Lisa tells me as I always got a good nights rest).  Some nights you would lie there thinking ‘I can’t hear him breathing’ but then you could and you would think ‘I can go to sleep now’.

I could be two metres away from Noah and lying on the floor and Lisa would get Noah to wee and he would get me! Once again he wouldn’t get into trouble it would just be ‘Noooah!’. I learnt very quickly not to wear your good clothes if Noah needed to go to the toilet. 

As Lisa said before – people say we are an amazing family, but Noah was the amazing one. He was the one that made us what we are.  People have said throughout the week, that he was lucky that he came to us.  I’m sorry to tell you but we are the lucky ones. For ten years, a house full of love because he chose to come to us. AT times I felt that I was unworthy to be his Dad, but I’m just thankful that he chose me. His influence on me and my family is immense.  Lisa gave me myself belief, but Noah gave me the strength and courage. 

I often joke and muck around saying my heroes are Buddy and Hodgie and people like that, but I can tell you right now that Noah was my hero and will always be.  I will never have had the strength to go through what he went through, and to do it with love for everybody else.  The last ten years I have cherished every single day that I have had with him. Not once did I ever wish he wasn’t disabled because I knew that was him. I never once questioned why.  People might look at his body and say that there were some imperfections, but Noah was perfect in every solitary way, and if I could ever, ever be close to what Noah was, I would be extremely, extremely happy.

I just want to say Noah Daddy loves you so much, and I’ll miss you forever.    


  1. I am sure you were Noah's hero Aaron, and I will also miss him forever.
    Love His Grandma.

  2. I have seen these photos so many times but still they bring tears to my eyes. Little Haz with a tissue by

  3. So very touching...and I LOVE that you felt exactly the same way as we did. WE are the lucky ones.

  4. I loved Aarons talk, it was so touching and sincere. I think he became a hero himself in our eyes.

  5. you are one cool dad (and Dude) Aaaron....when i come back i want you to be my dad...(i think i might weigh a few more kilos than Noah though you better pump those muscles up in your legs)...

  6. Thank you for posting Aaron's talk, i found it hard to understand on the audio. So beautiful.
    Harri with his tissue is heart breaking.

  7. That was a Beautiful Tribute to Noah, Aaron! Noah was so lucky to have you for his Dad!!

  8. Yes, I'm a stranger reading your blog and imposing myself on your life. I am truly sorry for the losses you've had to bear in a few short months. But thank you for sharing so much about this process and how you and your family have handled it. I am a mother to a child with a genetic syndrome who does not need as much care as your Noah did, but there are similarities in how our families are effected by the beautiful children we are blessed with. (And my husband teaches science as well). Thank you again for letting me read this and mourn with you from a far distance. Having the gospel in our lives truly is a blessing. After hearing of your recent loss, I've been reading about Noah's funeral. While I've been crying for you all morning, Aaron's comment here truly stopped me. He mentions your blog header and mentions how if Noah's wheelchair is not there, his legs won't be there either. I hope you can find the comfort, the solace, and the peace in your moment of pain. I hope that you can continue on as you learn how to be a family without two of your men. Again, thank you for sharing so much of your life on the internet. It has taught me much just this morning.

  9. Every day, your blog just tears at the heart and soul. Wow, such lovely, strong,powerful, beautiful words...wish I could say something to say how ardently I respect you and your family.

  10. I was always a little disappointed that I missed much of Aaron's talk as Archie was playing up. This was so wonderful to read especially in the context of Aaron passing away. You have a wonderful legacy and heritage King family. Love you all!

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