You know it's hard sometimes to put into words how you feel about someone or something that's happened. My nephew Noah was diagnosed with Hydranencephaly around 9 weeks old. You can read more about his story here http://lisajking.blogspot.com/p/about-hydranencephaly.html, written by my sister Lisa.
Last Saturday night, Lisa contacted me and said that Noah was sick and that they were flying him from Launceston to Hobart as he needed specialist care. I didn't really think much about it and thought everything would be fine.
On Sunday I found out that it was a little more serious than I first thought and that he had a collapsed lung and he was intubated and a respirator was breathing for him. Living alone sucks at times like that and not being able to do anything or be there to give a hug if needed because you live in another state.
Monday was a bit of a better day for me as Steph and the kids were up and being a public holiday, I went out to Richmond and caught up with them for a few hours and took my mind off things. Lisa and I would text back and forth every few hours, so I could see what was happening with Noah and facebook got more of a workout more than usual, if that's somehow possible. Noah was fighting and his condition was pretty stable, with a little bit of improvement and then some setbacks, but I thought that he would be ok.
This photo was one of the last one's that I took when I was down in Tassie in September, we had just done a walk for StGiles, which is a school for handicapped kids and Noah was sleeping away as per usual :)
I was worried about Noah and kept asking Lisa if I should come down, but she told me to hold off and she'd let me know if I needed to. Saturday morning I was lying in bed watching tv and playing on the internet, when I looked at my facebook and there was a message from Lisa saying trying to ring you. Can you ring? As soon as I saw that message my heart dropped and thought that it could only be bad news and leant over to grab my phone, which I found was flat. I plugged it in and rang Lisa back and got her voicemail, so I messaged her back on facebook and after a few minutes we were finally able to catch each other and she gave me the news that Noah wasn't going to improve and that they were going to take him off the machines. What do you say in that second?! I think I came up with something lame, like I'm sorry and we talked awhile longer and she said to come down for the funeral because they didn't want Noah to have to be on the machine for much longer, but I said I wanted to come down and that I'd look at flights and get back to her. Luckily there was a flight, so I booked myself onto it for 3 hrs later and told her I was coming down and arranged to get to the airport. I was doing pretty good till that stage, but I rang my boss and told him what was happening and I was bawling my eyes out and sniffling away and he got the gist of what was happening and told me to not worry about work and that family was more important and to take as much time as I needed.
I talked to Jared to get him to pick me up from the airport in Hobart and all the way to the airport I had tears on and off. Arriving in Hobart I was fine until Jared turned up and gave me a hug and I just started breaking down with him hugging me (Sorry Fard). When we arrived at the airport, we first ran into my Sister Nicki's husband Alex and one of his sons, so we went up together to the Paediatric Intensive Care Unit (PICU) and Lisa's youngest son Kobe who is 3 saw me and goes Pish, Pish and runs up to me and grabs me and goes lets dance. Kobe always cracks me up and all I ever hear all day when I'm around him is Pish a million times.
All my brothers and Sisters and their families had all driven down to say goodbye to Noah and Mum had also been down staying to look after the kids if needed, so it was nice to see them all for a minute and to hug them. Hugging Lisa and Aaron was the hardest thing and the tears flowed again and I wished there was more I could do to take away their pain. After a short time everyone said their goodbye's to Noah and it was nice to see all his nephews and neices with him, holding his hands and kissing him like they always did.
I was able to spend a couple of hrs with Noah, Lisa, Aaron, my nephews Jalen, Harri and Kobe and also Mum and be able to sit by his side and rub his arm and hold his hand and kiss his forehead and be able to tell him how proud I was to be his uncle and how lucky we all were that we were able to have him in our life for 10 years, when the doctors only gave him a year or two to live when he was diagnosed in his first year. After giving Lisa and Aaron some time alone with him, they let me have some time alone with him and to say goodbye, which was special and also hard to do, as he would be missed and was a big part of the family. Lisa, aaron, the boys and Mum and I were there when the Dr came in and he talked about what they would be doing and told Lisa and Aaron to let them know if there was anything that they could do to make Noah more comfortable. Harri had a seat and I think he needed a hug, so I sat him on my lap and wrapped my arms around him and held him tight. Ok to tell the truth I needed the hug and Harri was a good excuse for me to hold on tight to him and be near Noah and try to be strong for them all. After all the tubes and machines were shut off Noah passed away from us just after 7pm on Saturday the 8th of October.
One Angel was called home, we had him for a short time, but his time was up and he was needed somewhere else. Noah will now be able to use his body the same way that we take for granted, he can walk and skip and be able to talk with his loved one's and for that I am grateful. My tears flow, and I'm sure they will for awhile, know that I loved you and wish I could take away the pain of your family if I could.
I say bye for now, but in the future, I hope to talk with you and be able to take the footy out and kick around with you, just don't show me up to much :D
I'm sure Pop and Nan and Uncle Daniel are there to greet you.
Love always Uncle Chrish