My little washer helper

We do LOTS of washing at our house.

It's hard to find good help these days!!!!

And the bonus is he is the cutest helper ever.

Run, walk, push, for Noah

  

Yesterday as I stepped out of the hospital, the most beautiful clear warm blue sky greeted me for our much anticipated walk for Noah in the Run for a Wish Make-A-Wish  fun run. As Lisa said, Noah was putting the good weather on for us. I knew the Examiner had interviewed Lisa and Aaron and the boys about Noah and the fun run but I was so excited to find out they were on the front page.  It's nice to know some famous people. ;)

The fun run was held at Aurora Stadium and they think about 500 people turned up for the event. We had our own Team Noah t-shirts with a picture of Noah on the front and the number 10 on the back. Lisa had helium balloons for us to hold onto ready for releasing altogether at the end of the run. They were beautiful and colourful just like at Noah's funeral.

It was really lovely to see the balloons stretched out along the walk (as some of us were able to walk faster than others. :) and so they were like a beacon as to where our Team Noah were.

                                      

Kell, Dave and I were a bit behind the rest of the gang (roadside spills and face plants - don't ask!!) ;) and so as we entered the stadium, we could hear Casey on the microphone announcing Lisa and Aaron King and talking about Noah and saying, 'this is what it's all about' and how they could read about them on the front page of the paper.

As  they crossed the finish line everyone clapped and cheered. We could see it from across the oval and I tell ya, it was a good thing Kell and I were wearing our sunnies because all of a sudden I felt quite emotional and so very proud to be there for Noah. 

I hadn't seen our kids since we started and apparently Sarra came in in 49 minutes, running most of the way. I came in in just under 1hr and 20 but that was okay because everyone got a medal regardless.

You can just see in the LH corner here, next to Pip and Chloe,  Lorraine on her crutches after breaking 3 bones in her foot. We love you Granma.

                                                      

After our race, we released Noah's balloons and watched as they floated up into the sky. The other competitors cheered and clapped as the balloons were released and it was wonderful to see their support for an amazing little boy and his family.

You can read all about this day on Lisa's blog here  and also see everyone that was there on the day to celebrate one inspirational and gorgeous boy. Maybe next year Noah will want us to run it, like Kayla did in 46 minutes - or maybe I can just push the pram again. ;) 

                              

(photo from Lisa's blog)

My date with Flynn

 Late Thursday Flynn decided to  get a bit of a temperature. Simon took him for his immunisations but they wouldn't do it as his temp was 38.3 degrees. I knew it was going to be a long night, and I got his temp down to 37.5 with the trusty panadol but by Friday morning he was having a bit of trouble breathing and had started throwing up a feed at 5am and a feed at 7am. Because he was throwing up, the panadol wasn't able to do its job and his temp started rising again. I got his meds down at 8.30am and they stayed down which was fantastic but rang the dr and given his CAH condition, I got in straightaway. Dr D took one look at him (his temp was now 39.6) and called the ambo to take us to the LGH.

I knew Dr D was worried about an adrenal crisis. An adrenal crisis in SWCAH (salt wasters) people can come on real quick so we got a ride from Deloraine into Launceston. I wasn't overly worried because with Hallie having the same condition, I am used to it, but I was a little concerned because Flynn is a baby. On the way they had Flynn strapped in his car seat in the ambo, which left me to lie on the bed strapped in (safety reasons they said) but all I could do was laugh at myself being on the bed. I said to the paramedic that he wouldn't be used to having a 'well' person on the bed. They gave Flynn oxygen but he wanted to chew on the mask more than anything.

Once down in Emergency we waited for the Dr and to pass the time Lisa (my sister) and Kylie Bailey, came to visit and bring me lunch. I told Simon to stay at home with Jonty until I knew more of what was going on. Lucky I did because we now have a new bigger emergency department that was just opened up last Monday and they have become really strict about only letting in one visitor at a time. A security guard even escorts you to visit the patient so you can't sneak past either. So poor Kylie had to wait outside while Lisa visited me.

When the bloods were being done, I saw that Lisa was a bit teary because Flynn was so upset. I had forgotten that I was like that too many years ago but its not that I have hardened over the years of doing regular bloods with Hallie and now Flynn but that I'm just used to it now. I hope the Drs didn't think I was a mean Mum and my heart did go out to Flynn but it was just simply something that has to be done. I was touched however that Lisa was upset for Flynn. She might be Flynn's new favourite Aunty. :)

After the bloods were taken, the Dr decided Flynn had croup, bronchiolitis and a bacterial infection (due to a high white blood cell count) so they decided he should be admitted because they weren't sure if he was going to get worse again and wanted to monitor him. As a CAH patient, he doesn't produce cortisol, the hormone which protects us from illness and injury so it is easy for CAH patients to get sicker with normal illnesses that other people can produce more cortisol to fight it.

We started giving him stress doses of his normal meds which is just tripling the amount of cortisol he normally takes. When we get sick we naturally produce more cortisol but CAH people don't produce any so it has to be done for them. His sodium levels were down too because I had stopped giving him his salt saline, knowing he would just throw it up, so we started that slowly up again. Once that all started kicking in and he wasn't throwing up anymore, he started improving quite quickly. If he had kept throwing up, the meds would have been given by IV.

Last night, after Simon and the kids had been,  Lisa (K) and Lisa my sister, visited me bringing goodies and keeping me company. They made the night so much better. Even though I was in a four bed room, I was the only one there so it was also great not to worry about other people hearing Flynn cry all night. Lisa (K) took these photos on my iphone and it wasn't until this morning I realised that she got out of being in any. ;) Lisa said it was strange to be up on children's ward again after all the times she was here with Noah and the many times Noah was admitted, it almost felt like home for her. We had joked earlier in the day, that maybe if I said that I know Noah, I could get a private room.  Lying in my little sofa bed last night when it was dark and quiet and I was left to my thoughts, I could appreciate the time that Lisa spent in here with Noah and the memories the children's ward holds for her.

                                      

Only one problemo with Flynn picking this week for our one-on-one date, today was the Make-A-Wish fun run and I did not want to miss walking for Noah. We had been planning it for a few months and now with Noah's passing, it had taken on a more tender meaning. So last night, Lisa (my sister) and my niece Emily, kindly offered to come and sit with Flynn at the hospital while Simon and I and the kids joined with the Kings and family and friends to walk for a beautiful son, brother, grandson, nephew and friend.

This morning, just after I fed Flynn and was getting ready to go to the Make-A-Wish run,  the Drs came round and said although Flynn was still miserable, he could be miserable at home and if he got worse really quick then to ring the registrar and we could bypass emergency and go straight to children's ward. I just have to keep giving him stress doses and bring them down to his normal doses when he is well again. So I left Flynn with Lisa and ducked off to the fun run, happy that I was able to still walk for Noah and happy (and maybe just a little tired) to be going home today.

Nearer to Noah

(one of my favourite pics taken by Lisa, which was also on the front of the funeral programme)

Yesterday was Noah's funeral.

As I was driving into Launceston, anxiously checking the sky to make sure the weather was perfect for Noah, I was trying to decide whether the ache in my heart was because I really love his family that were hurting so much, or because I would really miss Noah. I decided that there could not be one without the other. If you knew the Kings, you knew Noah. If you loved the Kings, you loved Noah.

(one of my favourite family shots, taken by Chrish)

It was beautiful and peaceful and such a privilege to have a moment with Noah before the funeral began. I looked around the quiet room, at the faces of his loved ones, saying their soft goodbyes and gently caressing his hair and touching his brow with their kisses and I could not help feeling honoured and humbled by the tenderness in the room. I could not help feeling grateful for the knowledge that when we die, our bodies remain, but our spirit, our soul- the very essence of who we are, lives on. Finally, I could not help but let the tears flow, as I too said my own goodbye to such an amazing boy.

The funeral service was packed with hundreds of people. I was not surprised. It was a testament to the many lives Noah touched (including mine), the many hearts that he softened and the many people who resolved to be better, to do better - because they knew Noah and his family.

Here are a few things that were said that really touched my heart:

Lisa -

I’ve heard others say that when a loved one passes away they felt like there was no colour in the world anymore. After having Noah in our lives I now feel like the world is actually more colourful. I now see the beauty in simple things. He has taught us what is important, what our priorities should be and our family would not be how it is today, without him.

Now it's time to take the very best of Noah, his finest qualities, incorporate them into who you are, make them yours and share them with the rest of the world. In this way, through you, Noah lives on. (this was something a friend told Lisa in the days leading up to the funeral).

Harri -

Noah will be able to 'run, jump, skip and sidestep'

Aaron -

(If you know Aaron well, you know he loves Hawthorn, okay really loves Hawthorn).

"you might think my heroes are Buddy and Hodgie but my real hero is Noah".

Jalen-

What I can remember from Jay's talk is how he was absolutely glowing with pride and love as he wore the biggest smile, talking about his younger brother whom he loves so much.

President Prebble -

'This is very sad, but its not a tragedy' - in reference to the fact that death is not the end, that we have the opportunity to live together forever with our families and loved ones.

After the funeral service, we went to the cemetery. Each child was given a helium balloon to let go altogether. The children were all so enraptured with the bubble machine and watching the bubbles float and sparkle in the sunshine.

They were beautiful colourful balloons and after a prayer was offered by the graveside, they were all let go and the children all called out, 'bye Noah'. I smiled as I thought of Noah's Uncle Daniel, Nan and Pop Triffitt, my Charlotte, Ben and all Noah's other hydran friends watching the balloons rise up to greet them.

I stood for ages watching them fade into the sky, and whispering love and goodbye to one special little boy.

Lisa and Aaron watching the balloons

Oliver had drawn a picture for Noah (Hawthorn colours of course), that he put on top of his coffin. I was touched at the effort and thought Oliver put into it. Children were always drawn to Noah, perhaps they were more in tune with his perfectness than adults, who tend to often be busy and distracted by the world.

Noah had a way of making you stop and reflect for a moment. To slow down and enjoy every moment, to not sweat the small stuff but like his Mum, Lisa says, 'to make the days count'.

If you had the privilege of being nearer to Noah during the past ten years then you will know this :

"You've taught me in your lifetime.....more than I'd learned in mine. And you do, you do, you shine." (quote found here)

Thankyou sweet Noah.

*6* months and my mate Noah

Today I turn 6 months old. Where has that time gone?

I haven't really done much more since the last time we spoke at 5 months. Still just trying bits and pieces of pureed mush, still sleeping okayish, according to Mum but obvious room for improvements there. I'm happy to roll from my back to my tummy and can now get my arms out from underneath me, but am content not to do anything else. Don't even try to get me to sit because I just end up doing face plants. Mum says that's okay anyway because I can do whatever I like in my own time because she just feels blessed to have me.

One thing I did start this week was say "dad dad dad". I am so chuffed.

What's really on my mind this week though, is my beautiful second cousin (I think, or is it first cousin once removed) Noah. He passed away on the 8th of October. I am so grateful I got to meet him when I was still at the hospital, only a few days old........... (do you remember Noah - your Mum had to push your chair past my smelly roommates -it was a bit squishy so lucky your Mum is a good driver-we had a giggle didn't we!!)

Six months isn't very long to hang out but I know that someday I can hang out with him forever. Tomorrow is Noah's funeral, a celebration of his life. And even though I can't talk yet, I can FEEL. And I am looking forward to feeling the powerfulness of Noah's love and the way he touched so many lives with his beautiful presence.

See you at 7 months

My visit with Noah

Yesterday I went to Hobart to visit Lisa and Aaron and Noah. Noah has been in ICU since Saturday and Lisa and Aaron have not left his side since. Jay, Harri and Kobe had already been down on Sunday to visit with Lorraine and come home on Monday but now it was getting toward the end of the week again, they were all missing each other and since I was coming down yesterday , I was able to bring the boys down to spend time with Noah.

On the way down Kobe kept saying "I miss my Mummy". "We going to the hospital". I said, "oh sweetie I know you miss your Mummy, we all do". I knew I would crack it when I saw the boys see their parents. I could feel it rising up even before we hit the ICU doors. The closer we got, the more full of anticipation the boys were. When I saw the boys hugging Lisa and Aaron and SO excited to see them, I could not help but tear up seeing them altogether - there was some love in that place I tell ya. ;)

Lorraine had packed their bags and put in all these lovely cards for Noah from his school and other people. Sarra did a card for Noah but I forgot to take a photo of it. She put Hawka on the front, which I'm sure Aaron would approve of. She wrote how she hoped to see him at the bike centre where we recently got together and told him she hoped the Hawks would win next year.

Chels was also there and it was good to see her and have a lovely chat with her and Lisa together. And yes we even fitted in a few laughs.

The boys took me over to Ronald McDonald House to show me their room and all the games. I let Jay and Harri have races. One would take the stairs and one the elevator to see who was quicker back to the room. I would time then and they loved it. Except I think we may have been a bit noisy because when Aaron and Lisa came in - the lady at the desk asked if there was anyone with the boys. Eeek - sorry!!!

Lisa and I went back up to the hospital with Flynn to see Noah. They wouldn't let Flynn in to the ICU- obviously too cute - so a nurse looked after him while we went in.

It was SO good to see Noah. His skin is like velvet and feels so soft. He looks so peaceful. You can't help but feel you are in the presence of an amazing young man. It was such a privilege to be there with him. I didn't want to leave. I could have stayed there all night holding his hand and talking to him. It was like time stood still but then we heard Flynn cry out in the foyer and I reluctantly had to pull myself away.

The most beautiful part of the day was sitting there while the nurses quietly worked around him and sit back and watch Lisa and Noah together. There are no words to describe it. The love that I saw between the two of them was tangible, the quiet words that Lisa spoke to Noah, ones that made me smile like, 'Mr Noah, Simone is here to visit, stop snobbing her'. I loved watching Lisa caress and rub Noah's hand and talk to him and kiss his face. It was one of the most beautiful things I've ever witnessed.

Thankyou beautiful boy for letting me sit with you for a bit and hold your hand and talk to you. I didn't want to leave but Flynn was getting jealous. :) I love you very much and your Mummy and Daddy and brothers too.

And the winner is......

During the school holidays we got Just Dance 2. I thought it would entertain the kids for hours on end and they did enjoy it but the winner as always was the trampoline.

especially when Dad gets on too.

The kids never tire of it and love it in all kinds of weather. In summer they love putting the hose underneath and making it all wet before they jump on it and at night they love laying on it and looking at the stars and in winter they go out there with their pillows and blankets.

The other great winner is of course the park. When the girls were away at Oma and Pop's, Simon and I took the boys down for a play.

It's nice to know that 'generation z' can spend some time away from their computers, ipads, ipods, the dsi, wii and playstations. :)