Kobe's First Athletics Carnival

Kobe was so excited a couple of weeks ago, to come home with a notice from school saying that their Kinder athletic carnival was coming up.  My heart broke when I realised that it was on a day I work, and it broke even more when he started crying when I told him I wouldn't be able to go as he said 'why do you always go and watch Harri!? Why can't you come and watch me!?'.

I am so grateful to have work but hate that I have to miss things that the boys are doing when I'm at work.  I was very lucky that it worked out that I could actually go along and watch, and he was so happy to have me there. 

He talked about it all week and was counting down the days until the carnival was on.
He was so excited and kept doing crazy poses for me, whenever he would see I was taking a photo.

The Kinders took part in novelty events.  They had grade 6 sport leaders who helped run the activities.    It was so funny watching him as I don't think he took a thing in (as well as the rest of the kids in the class) because they would just run in all different directions. 

He was most excited about the teddy bear race.  He decided to take along Pickachu to run with.

It was so nice to be able to watch him at his first athletics carnival    He couldn't wait to tell Jay and Harri all about it when they came home from school.  I felt really sad to know that we would usually be waiting for Aaron to come home so we could tell him all about it too, but I'm sure he would've been watching. 

On My Fridge

When I decided to sell our old house, there was a few things that I ended up having to do which I had put off for over a year.  One was taking things off the fridge that were too hard to take down earlier.  

On our fridge we kept things that were important to us - the gym timetable, Aaron's school timetable so I knew when he was on class or not teaching (as we often rang each other during the day), important phone numbers that we used on a daily basis and a list of Noah's medications.

Aaron and I knew Noah's medications and doses off by heart, and could make up his meds without having to look at the list, but I was always worried that something could happen to us one day (crazy to think about it now when we know what has happened) and no one else would know what he took. 

Often we would adjust the dose of different meds depending on how Noah was.  He had seizures every day but if he was having more than usual we knew the maximum dose of his seizure meds we could give, and would adjust them accordingly.  If he was more constipated than usual then we could adjust the dose of his bowel meds etc.  I was always the one who would make the decisions about changing the doses as I knew Noah's medical needs the best, but this meant that Aaron and I were always talking about the doses of his meds and if anything had changed, as we would take turns preparing his meds for the next 24 hours.

Everytime one of the doses of a med would change, I would retype the list for the fridge.   I was always in a panic that Aaron and I could end up in a car accident together and could be in hospital together (or worse) and someone would have to care for Noah.  I just knew as long as there was an up to date list of his meds on the fridge, then at least some of his medical needs were taken care of.  I hated to think about the possibility of that happening because no one knew Noah like we did and it really worried me how people could cope with caring for him for a long period of time, if that was ever needed.  Thank goodness we never had to worry about it, and the list of meds on the fridge never had to be used by anyone.

It was very handy though to have on the fridge because whenever Noah ended up having to be admitted to hospital, I would just grab the list from the fridge and just hand it to the doctors in Emergency when they would ask me which meds he was on.   It was so much easier to just hand them the list, and they loved it and would go on about how awesome it was that I just had a list to hand over.   I guess it made it a lot easier for them when writing up his medication chart.

  

When Noah passed away I remember getting back home from Hobart and walking into the house and straight away seeing his list of meds on the fridge.  I knew we didn't need it anymore, but there was no way I could take it off the fridge.  It stayed there until the day that we got photos of our house taken for the real estate websites as I wanted the fridge to be bare. 

I also had a script for antibiotics for Noah on the fridge, in case we ever needed them.   Because we knew him better than anyone else, our doctors would allow us to make the decision about when Noah needed oral antibiotics, so we always had a script on hand.  It would often save him having to be admitted to hospital to go on IV antibiotics.  I couldn't bear to throw it away either, until the day that I finally cleaned the fridge off - over a year after Noah passed away.  

I hated having to take these things off my fridge when we moved, and wish they were still on there now.  I wish that I was still adjusting Noah's list of medications. I even hate not having a list of important phone numbers on our fridge anymore.  I used to have to ring the hospital, St Giles, school, the hospital pharmacy, and dieticians constantly.  It's so strange to not be busy with taking care of Noah's needs - even eighteen months later. 

I wish I was busy having to take care of all of Noah's needs and appointments still. 

I wish I was checking Aaron's timetable to see what time I could ring to have a chat during the day. 

I just wish things were so different right now.

You Won't Be My Brother Anymore!

My boys are typical brothers - best friends one minute, fighting the next.  I often get comments from people saying 'your boys seem like angels' or 'your boys are so good'.  They can be really good, but they can also be total pains at times - just like most kids :)

Harri and Kobe are the ones who get on each others nerves the most.  Kobe looks up to his big brothers so much and just wants to be like them.  That means he wants to do everything that they do, even if he is too little for it.  Harri gets frustrated with him easily and they always end up arguing and by the end of it Kobe is usually in tears.

This week I heard Kobe yell at Harri  'you won't be my brother anymore!' as Harri was trying to tell him that he didn't want to play with him. It made me laugh as Kobe was sure that was going to upset Harri, but Harri knew there was no way that could happen anyway and wasn't phased in the slightest. 

It reminded me of the day that we went for a walk at the Tamar Wetlands late last year.  It started off as a lovely family walk, with Kobe being our tour guide (map upside down and all!).

Kobe started to get tired and was walking really slow, which meant that everyone was over taking him.  I ended up giving him a piggy back for a while, but he decided he was right to walk again.

He desperately wanted to be the one who was walking in front, but his little, tired legs weren't cooperating. Harri didn't care and started walking in front of Kobe, which meant there were tears and they started yelling at each other.  

Our lovely family walk turned into two sulking boys who sat down and refused to talk or walk except for Kobe yelling 'you're not my best brother anymore!'.   Jay and I were in fits of laughter looking at the scene before us.

Within a couple of minutes they were over it (I hear that's the good things about boys!) and they were best friends again.  So much so, they were walking with their arms around each other on the way back to the car!

It was hilarious to watch and so cute, considering they were yelling at each other just minutes before. I guess they were 'best brothers' again.

Spending time at Kings

Over the last month I have been spending a bit of time at Kings Meadows High School as I have been asked to take some photos to be used as promotional material for the school.

It's nice to be back in the school, but it has also been hard as I walk around and have so many memories of visiting Aaron at work. 

Aaron absolutely loved his job and when I walk around the school I think about all the different things he used to tell me about work and wish so much that he was there, telling me how busy he is.  I feel so sad to know that there are two grades now who didn't have him as a teacher and only the grade nines and tens really know who he was. 

The first photos I took were the grade tens taking part in the Leukaemia Foundation's World Greatest Shave last month.  Kobe came along with me and had lots of fun hanging out with the students, watching them get their heads shaved and legs and under arm waxed.  The whole time Kobe kept talking about the day that Aaron got his head shaved and kept asking 'why did he do that Mum!?'. 

Kobe was fascinated with the the boys getting their legs shaved and waxed and couldn't figure out why they were doing it, when it was obviously hurting.  He kept saying 'they should stop!'.

One of the boys got 'King' (for KMHS) shaved into his head before he got it all shaved off. 

Another time I spent a couple of hours taking photos in lots of different classes.   I got to go into Aaron's old office which felt strange but it was nice to see it again.  The boys and I would usually go there once a week after school. The boys would run in so excited to see him and would tell them all about their day at school and would check out all the stuff on his desk.  It was nice to see the 'Kingy Cup' up in the window above his old desk.
As well as taking photos for the school it was also lovely to be invited to come and speak to the Child Studies class about Noah, and what it's like to be the parent of a child who has a severe disability.  Kobe came along with me and sat so quietly the whole time (having the iPad with us helped :)  It was the first time that I had gone without Noah, as I have been doing it for the last five years or so and he always came along with me.

The teacher said that she just couldn't invite me to speak last year as it was too sad as Noah wasn't going to be there with me. I'm glad that she asked me again this year, as I love talking about Noah and our life with him.  It was different this year because I talked about when he passed away, and I hadn't had to do that before.  Before I would often be asked questions by the students about how he would pass away, as they knew his life expectancy wasn't long.  I was surprised that I felt quite strong while talking about it all, but felt really drained afterwards and had a good cry on the way home.   There were a few tears from some of the students at the end of my talk and it touched me that they were so affected by it.   I imagine it would've been hard for them to see photos of Aaron and Noah together.

A couple of weeks ago Kobe and I went and took a few photos at their swimming carnival.  Kobe kept yelling 'go green!!' as he knew that Tamar was Aaron's team. 

He had fun sitting with two of Aaron's best friends from work - Lel and Kristy.  Luckily they were cheering for Tamar too.

Thank you KMHS for allowing us to still be a part of the school community.  We are grateful that memories of Aaron and Noah lives on in the school.  It is nice to be able to spend time at a place that Aaron loved to be at.

18 Months

Today it is eighteen months since Noah passed away.  That's just crazy to me. I have no idea where the last eighteen months have gone.  I hate that it's been so long since he was here with us. I hate it because eighteen months sounds like a long time, yet it feels like it just happened yesterday. 

I had heard that the second year after someone passes away is often harder, but I still wasn't really expecting things to be so hard right now.  Right now it's the hardest it has been and I feel like the grief is really hitting hit me head on.

Some days I think about how different my life is now.  Eighteen months ago I was continually watching the clock so I knew when to give Noah his next med or feed.  I was getting up in the night to turn him in bed so he didn't get pressure sores.  I was doing physio with him every day.  I was waiting for him to get home from school off the bus, wondering what kind of day he had.  I was talking to Aaron about what we should do about a new treatment he was having, and deep down I knew that he was getting tired and probably wouldn't be with us much longer. 

I would have it all back if it meant he was still here.  We miss him so much.  Our grief for Aaron has definitely taken over and I feel angry and frustrated that I haven't had the chance to even grieve properly for Noah, because Aaron died so soon after he did. 

Tonight the boys and I took eighteen balloons up to the cemetery to release.  When we pulled up there were a few other people visiting graves nearby.  One was a lovely older man who I often see visiting his wife's grave, which is very close to Aaron's.  I met him at the cemetery just a day or two after Aaron's funeral.   He was keen to have a chat and asked how I was doing.  I knew he would understand and told him how hard things are right now, and told him how I was surprised that things are actually harder as time goes on, not easier.  He smiled and gave me that knowing nod and said he knew what I meant.

He asked me how the boys were going and asked them if they were 'looking after their Mum'.  I laughed and told him they were good boys, but they were also my biggest headaches :)   When we got the balloons out of the car, he asked me if it was a special occasion, and I told him it was eighteen months since noah died, so we wanted to bring eighteen balloons up for him as we released balloons at his funeral.

 

 

When the boys let the balloons go tonight Kobe said 'bye Noah' which reminded me of his funeral when all the kids let their balloons go and they said the same thing.

 

Kobe is really struggling a lot at the moment.  He talks about Aaron and Noah a lot, but when I talk about them he says 'I don't like it when you talk about Daddy and Noah as it makes me miss them'.  A couple of weeks ago I bought him some new pyjamas with a monkey on them and he loved them, but the next day he started crying and said 'I think Noah would like these pyjamas Mum. You shouldn't have bought them for me because he makes me think about him'.  

Tonight before bed he wanted me to read him a book that I gave him for Christmas called 'I Love Monkey'. At bedtime he then said 'you shouldn't talk about Noah because now it's made me sad'.  It's so hard because he wants to talk about Aaron and Noah all the time, but then gets upset whenever we do because he just misses them so much.

This time eighteen months ago Aaron and I were washing Noah's body as it was just a couple of hours after he had passed away.  It was the hardest day of our life (at the time - I never imagined I would have a harder day, but I was so wrong) but after he had passed away we felt so much peace. We knew that we did all we could for him and had no regrets.  We knew where he was and although our hearts were broken, we also felt a lot of peace.

I still feel at peace but it doesn't stop me wishing he was still here and that things were different.  I wish we could go back just eighteen months and one week ago, to just before Noah got sick and ended up in ICU.  Back to when our life was busy and stressful, but wonderful and just how we wanted it to be.    How different things are now.

The Best Present Ever

The other day I remembered the best Christmas present that I was given which I hadn't shared on my blog.   The boys each made me a card, and this is the card that Jay gave me.  I'm always onto him about his writing, but I didn't care that it was his usual messy handwriting - what he wrote meant so much to me.  It was the best Christmas present ever and if I only got that I would've been the happiest Mum ever.
Things are pretty hard right now and sometimes it's hard to know whether the decisions I am making for my boys, in trying to help them deal with their own grief, are the right ones.  This just reminds me that the boys do appreciate things I do and say, even though sometimes they think it's too hard at the time. 

We will get there together and I hope that we can look back in the future and see how far we have come together, because without my boys I couldn't do it either.

Making It Ours

Our new house has felt like home almost as soon as we moved in.  It's been fun though making it more of our own by adding things to the walls like our own photos. 

I had some beautiful wall stickers given to me when Noah and Aaron passed away, and I loved them in our old house, so I knew that I would get more when I moved in.  After a quick search on eBay I realised that you can get beautiful wall stickers so cheap.   There were so many to choose from and it was hard to decide which ones to get, but I'm really happy with the three that I have gotten. 
Last week this one arrived and I love it so much.  It's definitely our new family motto.  Things are really hard, and seem to be getting harder every day, but I am trying to teach my boys to always have hope and never give up.  Life can still be good.


I had been anxiously waiting for this tree wall sticker to arrive, and it came today.   It was perfect to go on the landing on the stairs and luckily you could choose betwen three different sizes, so it fitted perfectly.   Now I have to get some photos printed out to put on the black frame parts.

I bought this print before we moved and have finally put it in a frame.  Kobe told me tonight that it looked 'awesome!' even though he doesn't even know what it says.   I'm planning on framing some pics of Aaron to put around it.

IIt's nice to be able make our new house our own.