Smiling Boys

I love seeing the boys with smiles on their faces and hearing them squeeling like girls :) Yesterday I was washing 'Nan's van' and it was such a beautiful warm day, so when Kobe came around the corner I gave him a 'little' spray with the hose.

That of course turned into something bigger as each of the boys were called out of the house to come and 'help me do something'. 

Kobe thought he was so good getting Aaron's feet wet!

I love how the simplest things can make the boys smile.

16 years

Today Aaron and I have been married for 16 years, and have been together for over 17 years.  

It's crazy to think that it's been that long already. 

And crazy to think of all the things we have been through together - the good and the 'bad'.

I wouldn't have wished to have gone through it with anyone else . 

We've been so blessed to have four beautiful boys together, and wouldn't change it for anything.

I'm looking forward to seeing what the next 16 years brings.

Life is anything but perfect,  but I'm glad that I can share it with my best friend (thanks Jay for taking the photos :)

Where Noah Is

At the moment I like being home a lot, because it's where I feel the closest to Noah as there are lots of memories of him here. I feel like home is where he is the most, but I actually also like going up to his grave more than I thought I would.  I don't feel like it's a place to go to be with him, but it's actually a really beautiful place and knowing his body is here makes me want to just sit up there and think. 

Kobe and I usually go up there once a week together while the boys and Aaron are at school, but we also try to go up there once a week as a family as well.  I came across these 'old' photos of us visiting Noah's grave on the computer, from just the week or two after the funeral.  This one was taken before we took Chrish to the airport to go back to Sydney. 

I'm so grateful that the cemetery is so close to home.  It's nice to have a choice to go and visit whenever we want to, and I actually find I'm driving past the cemetery at least every couple of days and am thinking about him constantly as I drive past. It's nice to go up at different times of the day, especially as the sun is starting to set.

Kobe always says it how it is 'Noah is in the hole' and 'Daddy and Chrish put Noah in the hole' (they were pall bearers at the grave as well as my brothers Jared and Eden, but Kobe can just remember that it was Aaron and Chrish that 'put him in the hole' as he saw a photo of it and it reminded him).   I tell him that Noah's body is in the hole and then ask him where else he is, and then he says 'with Heavenly Father'.   It's hard to imagine what he must think about it all.

I'm just so glad that we know we will be a family forever.  Without that I hate to imagine how much harder this would be right now.

Family and Friends

There's been a lot of hard things since Noah passed away, but there has also been a lot of good things happen.  One thing which has been so nice is being able to catch up with family and friends that we don't get to see often.

It was so nice to have Penny and Wayne surprise us by turning up at our house the night before Noah's funeral.  Aaron and I were really close to them when we were married without kids, and while Jay and Noah were little and we have missed them a lot since they moved to NSW thirteen years ago.  We used to go up and stay with them on the Central Coast when the two boys were little, but it got harder to do as Noah got older.   Harri and Kobe didn't know them at all, but loved having them here (maybe Penny's iPad had something to do with it!? ;).  We've been watching a lot of old home videos since Noah passed away and Penny and Wayne have been on some of them and Harri now asks a lot of questions...'did you stay at Uncle Wayne and Auntie Penny's house Mum!!?' and can't believe that we used to go there for holidays and is wanting to again.


It was also lovely to get a cheeky text message from Sarah one afternoon asking what I was doing the next day. Sarah moved to Melbourne and we keep in touch but it's not the same as being able to see each other regularly. She was in Hobart for a weekend just after Noah passed away and was so nice to drive up from Hobart, even though she could only stay for a short time and then drove back to catch a plane home. It was so nice to see her.

It is also nice to get visits from friends who live close, but who we don't always get to catch up with.  Thanks Kylie for bringing your cute chubby man up for a visit.  I can't believe how much he has grown since I took photos of him as a newborn.

It's also nice to have Andi home after living away in WA for a little while.

Aaron's sister Trudy, and our nephew Charlie came over for Noah's funeral from Melbourne.  It was nice to catch up with them. 

It was also lovely to have my friend Rachelle come over from Melbourne for the funeral.  We grew up together and still keep in touch, but was still very surprised and touched that she would come from Melbourne for the funeral.

Having family and friends visit with us during the last month or two has really helped us, and given us a lot of strength as it makes us realise that we aren't alone.

An Honour and a Privilege

Who would've thought that it would be so hard to walk into this place for (hopefully) the last time.  For ten years this is where Noah went very regularly to see his paediatrician Dr B. The longest we had gone without seeing him was probably four months, and at times we would see him every week or two, depending on Noah's health or what was going on with him.

Last week I rang his office one last time.  His lovely wife is one of his receptionists and she answered the phone.  Dr B and his wife had both come to Noah's funeral, as well as his other receptionist which we were so touched by.  When she heard it was me on the phone she started crying again and said how much she missed us and had been thinking of us.  She then asked which boy I was ringing about, and I laughed and said I actually just wanted to organise a time to come in and catch up with them and drop something off.

I had no idea what to give them for caring for Noah for so long, but we loved the beautiful cupcakes that were given to us from Tim and Helene which was made by the Cupcake Fairy,  so we organised to get some made for them and bought some flowers and had a special card made up with photos of Noah and the family on the front. 


 We arranged a time and Aaron and I went in last week after he had finished with his patients for the day. We were both very anxious about seeing him as we knew it would be hard and we would be emotional.   Aaron had only dealt with Dr B mainly when we were in hospital with Noah and just a few visits, and was always anxious about seeing him anyway as every time he saw him it would remind him of the day that he told us that Noah had hydranencephaly and wouldn't live very long.

Both Dr B and his wife were so happy to see us.  It was actually really lovely to be there with him, to talk about life now without Noah and how we were coping and about Noah's last week and the day he passed away.   A month before Noah got sick I took him to see Dr B and at the time I was very concerned about him and made the comment 'I think he is shutting down'.  At the time Dr B didn't say anything but I knew he was thinking about what I said, and was possibly thinking the same thing (he doesn't give much away).  I asked him last week if he remembered me saying that and he said he did and said 'you knew him very well and Mum's always know best'.

We talked about how we had tried everything to help but in the end there was nothing else we could do, and I could see that and could see how tired Noah was.  He asked us what we had been doing since Noah passed away and we said how boring life is now and how we have no idea what people who don't have kids with special needs do all the time.  Dr B then laughed and said 'you'll have to spend time together now' which made us laugh.

We talked for about twenty minutes and it was actually really hard to wrap it up as I knew that it meant we were saying goodbye and kind of closing the door on another chapter of our lives with Noah.  I could tell Dr B. was the same - he kept wanting us to talk and stay as long as we wanted.  In the end I said that we just wanted to thank him so much for the last ten years and he said that he wouldn't usually say it was 'a joy' to care for someone, but he actually did think it was a joy.  He then said that it was an 'honour and a privilege' to care for Noah and like it was mentioned at Noah's funeral, people learnt a lot from Noah and he said that he actually learnt a lot from caring for Noah and also learnt a lot from me (He no doubt got sick of me hounding him to try this or that for Noah, but I believe that being proactive in Noah's care is what helped him to live a lot longer than was first predicted).  He said he was going to miss seeing us and I told him that I felt the same. That we had built up a good relationship over the ten years and it was hard to know that we wouldn't see each other anymore, unless I made the effort to stop in to say hello or unless any of the other boys ended up in hospital for something.

He told us how beautiful he thought Noah's funeral was and said as far as funerals go it was very special, and that we should be proud of our boys.  I told him I would definitely come to visit from time to time and let them know how we were doing.  When we said goodbye he shook Aaron's hand and gave me a HUGE hug, and we were all very emotional.   It's so nice to hear that Noah touched his life and that he felt it was an honour and a privilege to care for him. 

Monkeys for our Monkey

During the week Kobe and I ran into on of our favourite nurses from the kids ward at the hospital. She used to live across the road from us when we lived in our old house, and often cared for Noah when he was a patient in hospital.   It was so nice to see her as she was away when Noah passed away and the week of his funeral.   She told me that last weekend she had gone up to Noah's grave with her husband and daughter and had dropped something off for him and us.

Yesterday Kobe and I went up there and it was still sitting safe and sound in a bag on his grave.  Often we go up and someone else has left something for Noah like his little teddies that sit there.

In the bag was a lovely card for us and two beautiful monkeys - a mother and baby.  Attached to them was a lovely note that said she was sorry she wasn't able to say goodbye properly.  She wrote that she saw the monkeys and thought of him and thought the mother monkey could stay at his grave, and the baby monkey could come home to our house as it would represent our family, and that we are all still together, even though we can't be physically.

As I was reading the note I sat crying happy and sad tears at the same time.  Happy that she did something so thoughtful and beautiful for us and Noah, and of course sad because I was just missing him so much.   The mother monkey now sits on top of his grave.

Kobe loved them and was making monkey noises the whole time we were there.

We have brought the baby monkey home, and he now sits on top of Noah's special box with some of his other special toys.

Thank you so much for your beautiful and thoughtful gift Nichola. 

Moving On

Yesterday was a really happy day for Harri, yet this morning on the way to school there were a lot of tears again.  Earlier in the week Harri said to me one day after school 'you know how our life is really sad now because Noah died.  Well now I'm even sadder because my friends aren't being kind to me anymore'.

I asked him what he meant and he said that straight after Noah died all of his friends in his class were 'very kind' to him and now only his best friends were being kind.  He told me of a few things they had done which was nothing major, but obviously it was upsetting him so I went and had a chat to his teacher about it. The next day she told me that she kept an eye on him all day and he was quite happy and then went off in the corner and had a bit of a cry and again said his friends weren't being kind to him.  She said that she had been watching what was going on and it wasn't that at all, and he was obviously just feeling sad.

This morning on the way to school he started crying and said 'you know how when Noah died that everyone thought my monkey 'Nono' was special. Well now no one except for Sarah and my teachers think he's special now.  No one talks to me about it anymore and are forgetting he's my special monkey because I got it from Noah, and it's making me feel really sad'.

As soon as he said it, it hit me what is going on.  He's still feeling really sad about Noah passing away and at first everyone was talking to him about it, being extra kind to him at school and paying a lot of extra attention to him, and now that it's almost 6 weeks since Noah passed away that isn't happening as much.  To Harri having his friends not talking about 'Nono' or Noah anymore, means they aren't being kind to him, and he takes it that they are forgetting that he is still sad.

As I was talking to him about it in the car on the way to school I also got teary as it's exactly what's happening to all of us since it's been 6 weeks tomorrow, since Noah passed away.   There are always those very thoughtful  friends who are always aware of how hard it is, and ask all the time how you are, or continue to let you know they are thinking of you by sending you a message or text, give us a call, send an email or something in the mail, or drop in to visit.  They realise that it's not getting any easier, but is actually getting harder as time goes on. 

We've had lots of lovely cards and gifts delivered in the last couple of weeks as people held off on purpose, knowing things would quieten down for us and that meant so much.  But then you look at the majority of people getting back to their lives and it hurts.   It's of course normal and we aren't expecting everyone to stop their lives because of what has happened, but there is so much we have learnt from what we are experiencing at the moment.

It really hurts that some people don't say anything at all.  It hurts that some people who you feel like you know really well, just act like it hasn't even happened.  Other people that we have less to do with, and even 'strangers' have been so lovely in coming up to tell us they were sorry to hear about Noah, have even given me a hug or have just said 'I don't know what to say'.  Just saying those words mean so much.

It hurts that at first you get hundreds of people asking how you are and now just a few.  It hurts that at first hundreds of people were 'talking about' (FB lingo) Noah's memorial page on Facebook, and are commenting or 'liking' his photos and videos, but every day it gets less and less.  It hurts that there is less traffic on my blog as people have dropped off reading how we are, as the weeks have gone on.

I know it doesn't mean that people have stopped caring, but it hurts because you see people moving on and it makes you feel like they have forgotten Noah, and don't realise how much you are still hurting. Deep down I know people haven't forgotten, but it's just that for others it's easy to move on.   I know I've probably done the same in the past when other people have lost loved ones. You think about them a lot in the first month, but then you just forget how much they must be hurting and move on with your own life.

I guess Harri is upset because he feels that his friends are forgetting he is still sad and hurting, and that's how it is a bit for me too.  I don't want people to ever forget Noah. I don't want people to forget that we had this amazing son who changed our lives forever.  We will never stop hurting because we miss him so much.  We know we will be with him again and I guess that brings you comfort, but it doesn't make it at all easier. I want people to mention his name and talk about him, even if they are worried that I may cry. We love talking about him.  It was so nice yesterday at Harri's athletic carnival for two women to come up to me to say they were sorry to hear about Noah and actually ask me about his last week and what his last moments were like. 

I sometimes wonder if people think that because we have faith about being together with Noah again and where he is at the moment, that we are 'okay'. We are 'okay' in that I feel comfort in that I knew he was ready,  but unless you have ever lost a child, and especially a child that needs you to care for their every single need, every day of their life then, you will never know how much of a hole it leaves in your life.  I was talking about that last week with another Mum who has a child with special needs.  All of our boys are our life, but Noah controlled our life.  Whatever Noah was feeling, we all felt.  Whatever Noah wanted to do, we had to do it too.  If he were sick the whole family was affected. If he was happy the whole family was happy.

After school Harri got into the car and dropped something, and straight away he burst into tears and nothing I could say would stop him crying.  I then talked to him about how we are all feeling sad at the moment and some things just aren't that important to get so upset about (he is crying over absolutely everything at the moment - kind of like he is Kobe's age again).   He was listening and taking it all in, and then said 'but one thing IS really important to be sad about and that's about Noah'.

I told him that he was right and it is okay to be sad about Noah.  Sometimes it can be easy to just brush away how we are feeling by thinking 'it's okay, he's in a good place' or 'we will see him again' but it IS okay and totally normal to be sad.  Hopefully as time goes on for Harri and all of us, we will look back and see how far we've come from the way we are feeling right now, because right now it's hard to watch people move on, while things are getting harder as the weeks go on.