Up until now I havent really written much about Dad's dementia. Its certainly not for lack of content - I could write for days about my sweet Dad and his antics!
He's always been a character, like the time he sat down after work to settle in with a beer and watch some tele. He'd had this low coffee table which we used to sit around on the floor. So he was sitting on the floor and took his work boots off, placing them beside the table. Beer and glass at the ready in front of him, he cracked open the beer. Watching the TV as he slowly poured his beer, he emptied it into his glass and then announced, "shit! I've just poured my beer into my boot!" He had completely missed the glass and overpoured it into his boot, then having to empty his boot of beer and clean it out. I honestly dont think I've ever laughed so hard. That was the beginning of him realizing he needed glasses I think!

Or another time when he told us a story of how he was walking through the domain after a work conference. Walking along, minding his own business when all of a sudden a seagull flew out of nowhere. It flew smack into his chest, then hit the ground squawking and flapping around. He stood there, staring at this ridiculous bird, trying to make sense of what just happened. Looking up, he saw a groundskeeper staring at him, shaking his head, as if to say, "you don't do that to seagulls." 

No, its definitely not for lack of content. Dad has some hilarious stories to tell. Or at least, he had. Things are different now. Me not writing about him is more because of my loyalty and respect for him. Dad used to read my blog religiously. He would check the blog all the time and text every so often asking if I had posted lately, in case he'd missed a new post. He was one of our biggest supporters with our kids, especially Olive, and he liked to know every little thing they were up to. I didnt want him to read what I had to say about his illness. Because dementia is fucking awful. Its cruel and heartbreaking.

And the worst moments with Dad are not when he stumbles with his words, or has another fall, or any other daily struggle. It's when he is aware that his mind is failing. When he knows he is unwell and theres not a damn thing he can do about it.

 It's just over a year from his diagnosis, and Dad probably wouldn't know how to get to my blog now. Or it wouldn't even occur to him to try. And while my loyalty and respect for him are still at the highest level, I need to write about it, to try and process it somehow. Because this is so goddamn hard.

 My Dad is 64. He hasn't even made it to the age of retirement yet. In hindsight, the dementia had been starting a few years prior, but we got the official diagnosis last year. Just over a year ago.
Early last year, Dad was living in his apartment. He was working. He was driving. He was visiting. He was playing music. He could write. He could talk. He could cook. He could pay bills. He could play with the kids. He could do crosswords. He could laugh.

 Just over a year later and the only thing my Dad can do at the same level as then, is laugh. And laugh he does! He is so jovial. All the 'help' who meet him adore him. They all want to wrap him up and take him home! Coz he's just like a kid.

 Whenever anyone hears the term dementia, they automatically think of alzheimers. Dad doesbt have alzheimers. He has another form of dementia called frontotemporal dementia. It begins as one of two variants - behavioural or language, because those are the two areas the frontotemporal lobe is responsible for. Dad has the behavioural variant. Eventually they merge together. This affects his behaviour and his speech. So for instance, he remembers everyone's name. He knows who we all are and probably who half the people reading this are! But the pathways of how to do things or just occurring to him to do them have diminished. And they continue to day by day.

 Until recently, us kids have been caring for Dad and his affairs. But we had a recent reassessment (we last had one done when he was living with me last year) with the Needs Assessment Team. It's been quite confronting to say the least. We have a lot more outside help coming in now - to help him prepare food, clean etc. We've been watching and monitoring Dad's decline, and have all known he HAS declined but its not until you compare with a year ago that you realise just how quickly it has happened.

 He had to stop working and driving straight away. Slowly, the other things have been taken away from him. Not by us, by this cruel disease. It's taken his ability to play music, to cook, to be artistic, to look after his house and himself. And its diminished his ability to walk and talk. All of these things worsen week by week, day by day. This last assessment told us he already qualifies for a care home.

 Dads independence is no longer really. He needs assistance with most things, and we are lucky to not only have carers who come in twice a day, but my absolutely amazing sister who lives upstairs from Dad and is there day to day helping him, and organising his life. From my experience when Dad was with us last year, this is a bloody tough job. Dad being Dad makes it easy. He does what we tell him, he isnt aggressive or disagreeable. But emotionally, it is taxing. Watching the strong parent who once was, deteriorate before your eyes is so confronting. And having Dad there every day and night means my sister doesn't get a break from that. We try, of course, to do what we can where we can, but that doesnt stop the fact that this is huge for her. For us. For Dad.

 Mostly, I just go with the flow with Dad and what needs to be done. The roles have reversed and we take care of him now. But when I allow myself to think just that smidge deeper, my heart aches to have my Dad back. To have one more normal conversation with him, one more normal hug, one more normal visit, one more normal phonecall. Just one more normal. But those are gone now. So I try not to think too deep. Because it literally cracks my heart when I do.

 Those who know my Dad and love him, please go and visit him. I know it's hard. Believe me, we all find it hard! But so does he. So if you can rustle up the time and energy to do it, please visit. It wont be long before he changes even more x

Last night at bedtime, I said goodnight to my 6 year old for the last time. She was too excited to sleep - she would be 7 in the morning!

 Now, its 6.28am and theres wrapping paper strewn across my bedroom and a squealing 7 year old opening the boxes of her new toys.

 I say it every year but I'm really struggling to wrap my head around her age this year! I actually cant quite believe she has been here for 7 years. Olive is my baby, she always will be. But babies aren't 7 years old!?

 On the one hand, she's still very much our baby. I still lie with her every single night until she falls asleep, and every single night she comes into our bed at around midnight. She doesn't like being alone and likes to have company around her, even if they aren't talking.
 She is scared of the dark and every night you hear her feet quickly running down the hall to our room. She doesnt much like staying away from home, and likes the comfort of Mum and Dad.
 She still hasn't mastered the art of tidying up and at any given time in our house you will be sure to find an Olive sized mess (generally Barbies, LOL dolls, or Our Generation dolls and all the accessories they all entail) or a trail of cut up shit - paper, sellotape, string, doll hair. Basically, with Olive, if scissors can cut through it, cutting will be done. And if scissors are not suffice, a knife will do (as we found out with the recent boxes she annihilated and then stored pieces of in her wardrobe for over a week).

 And on the other hand, she is quite the grown up little lady. I'm no longer allowed to walk her into school or go into school to collect her - she must be dropped off and picked up at the front gate.
She showers herself and even attempts to wash her own hair (a difficult feat, she was blessed with thick Robertson hair!), she makes herself snacks, and prepares her own breakfast, she has chores and she is a little speed demon on her bike.
She has a lovely caring streak and is always there to console an upset friend, or help and play with her 21 month old cousin.

 She is selective about when she wants to be independent and most of the time she has it a bit muddled up - like completing her own urine test for the doctor while I wasnt home and Eddie didnt know she was doing it; or trying to cut up snacks with sharp knives - yet she refuses to get her shoes from the garage on her own or tie her own shoes, despite knowing how.

 Olive is thriving at school, and has made a bunch of good friends who she hangs with every single day. She sees the good in people, and she recognizes when someone is being treated poorly and is working on standing up for them.

 My girl is at the in-between stage now - halfway between a Little Girl and a Big Girl. Shes my darling, hilarious, beautiful, amazing 7 year old.

 Happy birthday sweet angel, Oli Boli! We love you so much xxx

When Olive first started school, I read a book written by a fellow nevus mum to her class and talked to the kids about Olive's nevus. When she started year 2 at her new school, she decided she didnt want me to do that and she would tell people as she felt neccessary.

 So that's what she did. She showed a few friends and kids in her class but it started to take a backseat and wasnt the focal point of Olive as a person (just how we want it to be!).
Now that she is almost 7, discussions about Olive's nevus aren't as prevalent in our every day conversation anymore. The need just isn't there - we have no health concerns, and she accepts it wholeheartedly and is proud of her skin. Unless we're meeting with her derm or she donks it, her nevus really doesn't come up much. It is just a part of her body to her and to us.

 So imagine my surprise when it did come into conversation the other day and what Olive told me. I cant remember how the conversation started but somehow her nevus was brought into it. The rest of the convo went something like this:

 Me: "Well not everyone in your new class knows about your nevus though aye honey?"

 Olive: "Yes they do mum. I told them about it."

 Me: "Oh did you? At lunch or something?"

 Olive: "No I stood up in front of the class and told everyone all about it. Then I showed them."

 I was taken aback by this as Olive can be quite shy sometimes, so I asked her how it came about.

 Olive: "Oh well P***** was telling the class about her diabetes and her port and Miss Q asked if I wanted to talk about my nevus so I did."

 Olive and her friend P***** are one of a handful of kids who's photos and care charts are on the board in the staff room. All the teachers know about them and in Olive's case, what to do should she injure her nevus or overheat because of it. Olive knows she's special because most people don't have CMN and knowing her picture is in the staff room makes her feel a little like royalty!

 But the kids aren't all aware. At least, they weren't. Until she took it upon her little 6 year old self to inform them. And holy moly I couldn't be prouder. The confidence in her in just a year at her new school is astounding. The staff there blow me away with their investment into each child's well being. I'm so happy we changed. May she continue to thrive and grow stronger each day into the confident, beautiful young lady she is fast becoming ❤

Reading through my previous December posts, it seems an end of year reflection is the theme. So, in an effort to keep with tradition, here is this year's. Each year for the last 3-4 at least, seems to have presented itself in such a turmoil of difficult and amazing events and situations. Twenty eighteen has been no different.

 We gained a new beautiful little soul in the form of a darling wee boy called George - my nephew. He's almost 3 months now and is the sweetest little baby. Him and his big sister Zoe bring so much joy and happiness to our lives!

 One of the huge things we've been going through this year in particular, is my Dads health. Our concerns came to a head when he was diagnosed with dementia. We've had to make big changes and take on the caregiver role for him. Unfortunately, this is an ongoing situation and won't get 'better'. I would love to write more about our experience with Dad and this awful disease but I'm not going to as it's not my story to tell so publicly. But I will say, it is definitely taxing and so very emotional - but we wouldn't have it any other way and we try our absolute best to keep dad happy and safe. So far, our goals of those two things are being met.

 I'm finally in remission with my crohns, thanks to a wonderful gastroenterologist and being eligible for the drug Humira. After a good couple of years of feeling like utter shit, long may it last I say!

 Olive is doing amazing at her new school. She is thriving both socially and academically. I actually can't believe she will be a middle schooler next year. She seems too little to be a year 3!

 We also have big starts ahead for the coming year with our two big kids. Meisha is off to intermediate and Jaxon is off to high school. I can't help feeling a bit old realising their life stages now.

 We lost some very very dear people this year, some who I've written about previously. My cousin Debbie passed away in August suddenly. I wanted to end this post with what I read at her funeral, because first, I want Deb to know I think of her all the time, and second, because she was a mother who loved her children fiercely and I want to acknowledge that again as we come into the first Christmas without her. It will be a "First Christmas without" for many people this year, and I want those people to know that I'm thinking of you all and sending you loads of love.

Merry Christmas everyone x

 Our death is not an end if we can live on in our children and the younger generation. For they are us; our bodies are only the wilted leaves on the tree of life.

 Albert Einstein gave us these words, and their sentiment rings true today as we farewell our beautiful Debbie.  

Deb was not only a devoted and loving mum to her gorgeous children, she always had loads of love to give and a laugh to be had.  I remember as kids we used to stay with her and her kids when we came to Matamata. I adored her. I loved her lifestyle, her ease, her sense of humour. I looked up to her and I remember thinking that one day I wanted to be just like her.  

 As I got older and less willing to do anything with my mother, I didn't see our matamata cousins anywhere near as much. But even though the visits were further and few between,  Deb always opened her house to us if we came down.  She always made us feel welcome and was always in for an inappropriate comment and giggle.  I can still hear her laugh and see her smile in my mind. 

 Although a huge part of us staying in touch more recently was through Facebook,  Deb never failed to support me from afar when we went through hard times in our family - and we've had a rough run the last few years! But I would often get messages from Debbie sending me love and encouragement or just having a laugh. 

 There's no words adequate enough to describe the void now in our world without Debbie. It will just never be the same. Her laugh, her smile,  her love - her beautiful soul will be missed way beyond measure and she will never ever be forgotten.  Rest in peace my sweet cousin. Love you x  

When you are little everyone talks about how big you've grown, how tall you've gotten, what a big girl you are. We're told were allowed to do certain things when we're an adult, how we can do this or that when we're 'bigger'.

Obviously, bigger means grown up - an adult - and so because certain things are out of reach until that magical time, we strive to get there. 

But I'm here now, in Adult Land, and have been for some time and I can tell you... being an adult isn't all its cracked up to be.

It's hard. Really hard. There's nobody to fall back on for the shit decisions you make. There's no excuse of 'well she's just a little girl, she doesn't know any better'.
Being an adult is being responsible and mature. It's making good decisions, and facing the outcome of whatever you choose. It's dealing with emotions and not packing it away to allow it to fester.
Especially when you're a parent.  You now have these small beings who watch your every move, every decision, every screw up, every triumph and YOU have to show them how to be that 'big person' they're striving to be.

If I'd known how hard being an adult really is, I'd have used every single birthday wish to stay little.

Oh, how I miss walking hand in hand with Mum and pressing my finger against her nails. It made me feel safe and protected. Or when I'd sit on Dad's knee at a late night visit at mt grandparents. With my head on his chest, I'd drift off to sleep hearing his voice, his laugh booming in my ear. And later on the drive home, I'd pretend to be asleep so he would have to carry me to my bed.

After a bad dream, Mum or Dad were always there ready to console with arms wide open and to show me my world was safe. That the monsters or ghosts in my dream weren't real.

Now that role falls on me with my kids. And while I couldn't imagine life without them, or being a Mum and not doing those things,  I miss being 'protected' as such.  Because the truth is, those roles have been reversed with my siblings and I and our Dad.

My dad, my dear old dad. He's had a rough few years and has now been diagnosed with dementia. Frontotemporal dementia is what is suspected. He has come to live with my family and I for now as he couldn't live on his own anymore. The kids cherish having him here - Olive in particular. She has Pop wrapped around her little finger and they adore hanging together.  Among numerous other games, they draw endless notes and letters to each other saying how much they love one another. They play silly games and it's commonplace to hear them cracking up laughing from the sun room.

It warms my heart to hear them and the older kids and I often look at each other and grin when we hear their voices giggling and laughing at their inside jokes. It's a special time this time we have with him living here. One day, THIS dad will be a distant memory as the disease takes hold. It's already put its claws in and changed him from how he used to be. So while on the one hand, it breaks my heart that the Dad, the Mark, the Kram, we always knew has faded somewhat, it makes my heart full to see him enjoying himself and content in our company.

And this is so special for Olive. It is for all the kids but the big kids got a different version of Pop when they were younger and I think they will always hold those memories dear to their hearts. Olive can't remember Dad how he used to be. She just knows this current version and she ADORES him. The games she plays,  the pictures she draws, the giggles she has - these will be her memories. 

Slow down and smell the roses. Take in the scenery. Treasure the kisses, cherish the hugs. LIVE every single day and relish in the things that make you happy. Enjoy the small things because one day you'll realise they are the big things.

There's always inspirational quotes such as these doing the rounds, and when you read them you think, "Yeah!  So true!". When people use them in conversation you wholeheartedly agree, nodding enthusiastically and saying, "yes! You're so right!"
But it can actually be easier said than done.

Life's been chaotic this year already. This last month has been actually slightly insane and I'm kind of waiting for the ride to stop, or at least slow down.

Not all of it has been negative per se,  but all of it quite consuming and emotionally taxing. A new school for the girls; best friends moving cities; being given six weeks to find a new house while rent prices in Auckland are exorbitant; packing the old house and moving to the new one; dealing with Olive's anxiety issues; the passing of Jaxons friend - just to mention a few. Amid all of these big things going on, I've started flaring again and fighting off sinus infections, chronic headaches and tooth ache to boot.

When you are on a never ending reel of emotional overload it can be too easy to overlook those small things that make life what it is and give you purpose to keep on keeping on.

Today I attended the funeral of the very much loved Dad of one of our best friends. After a long and difficult battle with cancer, he spent his final days at home surrounded by his beloved family. Though with a death such as this and with Aiden's, there is the blessing of being able to say goodbye, that doesn't actually make it any easier after that person is gone. There are still all the Firsts that occur - First family gathering, First birthday, First Christmas,  First family holiday - all without the precious person who would've otherwise been there. That's hard. So fucking hard. No matter how you sugar coat it, hearts are cracked and broken, minds are dominated by thoughts and memories and wishes.

I only met J a handful of times but the message today from his family rang loud and true. The love for him was evident in the tear stricken faces of his family, his kids and his grandkids, and in the outpouring of sentimental stories and anecdotes told. I felt honoured to hear about those small snippets of a life well lived, and well fought for, by a courageous man held in such high regard by my best friends.

Those stories, songs, laughs and memories at the end of someone's life are what we hold so dear, so tightly, for years to come. Often they make their way through generations to come with recounts of Grandma's apple pie, Uncle's summer escapade or the time Dad taught us to mow the lawns and so on.

A person's legacy lives on in those left behind. It is easy to think that a legacy has to be something of public recognition or monetary value. But in truth,  a person's legacy is that of values and strength.  It is all of those things we can so easily forget to stop and enjoy to the fullest. It is all those times when you make someone feel good, and loved, and strong. It is all those times when someone put you before them and helped you in need. When they boosted you up and made you see your worth.  It is all those laughs, those tears, those cares, those truths. Ultimately,  a legacy is love. And these are the things that matter. As soon as that person is gone, no amount of money or things can replace them. People place values and love over material things. But we often forget to do this in life.

So this is just as much a reminder for me as it is for you - Stop. Slow down and smell the roses. Take in the scenery. Treasure the kisses, cherish the hugs. LIVE every single day and relish in the things that make you happy. Enjoy the small things because one day you'll realise they ARE the big things.

I'd like to start off this post by saying that I have the permission of both Aiden's Mum and Dad to publish this post.  I just want to explain that this is about my experience with my son I'm writing about.

I'm not trying to detract in any way the immense and indescribeable loss that Aiden's family is going through right now, I am just expressing and processing as a mum about my child and his friend.
I don't even have the words to express how sorry I am, and how saddened I am for Aiden's parents, and it isn't my place to delve into their grief.  That's their story to tell and an unimaginable one for the rest of us and I would hate to do any disservice to them by saying the wrong thing.

* * *

There comes a time in everyone's life where mortality is realised and the emotional impact and pain of death is forced upon us. For many, we don't lose someone close to us until we're well into adulthood. And for just as many, that first experience of death of a loved one is brought down like the fist of fury when we are just young.

When faced with the question of death from our kids,  we all tell them we die when we're old. When we've lived a full life. We've bred the next generation and hopefully the next after that. We've screwed up, we've loved, we've lost, we've conquered. But this sentiment doesn't always ring true.

My boys friend has been sick for the last 19 months. These kids are 12. He had a rare form of severe aplastic anemia and has been battling like a freaking soldier. This soldier's name is Aiden Hayes.
On Tuesday 27 February we went to pay, what will most likely be,  our last visit.

Aiden asked that Jax and 3 of his other mates - Milo, Jude and Daniel go and visit him. He didn't have much time left. We were told he was in Paediatric ICU and would likely have to go on a ventilator. I organised with the other mums to take the boys in that morning. Daniel's mum Fiona came too. We tried our best to prepare the boys for the situation but in reality, even we didn't know what to expect.

The mood on the way to the hospital was sombre to say the least. We were all quietly nervous and not many words were spoken. As we entered the hospital, the boys started to get a little anxious and silly and I warned them that in ICU they need to be respectful and quiet. I needn't have.

As soon as we entered his room, the mood shifted immediately. In the dimly lit room, with machines a plenty beeping away, lay a small body. The small amount of hair that had grown back after chemo was fuzzy and matted, his skin red, puffy, flaking and so tight on his body. A nice soft blanket laid over him, as his head lay on a pillow with dump trucks on the cover.

It was plain to see that the toll of the disease and numerous complications had ravaged his body.

The boys didn't really know what to say - none of us did really. What do you say to a young boy whose intense pain and suffering is coming to an end? My heart just broke. I tried with all I had to hold it together and not cry, for Aiden,  and for the boys. My efforts were meagre, and as I turned for a tissue, I saw tears falling from everyone's faces.

Aiden knew this. You could just tell. He knew how pained we all were to see him like this - he knew this was the last time we would visit - the last hurrah.  And he instinctively knew the boys just needed something 'normal' to lure them in and try to relax a little. There was something inexplicably peaceful coming from him. Between each struggled breath assisted by the machines (the extremely difficult decision was made not to put him on a ventilator, instead to assist his breathing with a a high oxygen breathing apparatus), he asked the boys about what subjects they were taking, about their sports,  he complimented his mate on his new found abs. He spoke of the most mundane subjects at a time of such significant meaning. He talked just as though there wasn't anything between them but some time between visits.

Each word spoken was a struggle and the natural inclination to stagger his breathing with his speech was dominated by the machines and inability to get all the oxygen he needed. But he continued on, filling the silence to ease the tension.

I was left that evening feeling so very torn between devastated and honoured. To be a part of somebody's death process is a privilege. Though the experience was one that devastated me and left me with such sadness for Aiden and his family,  I think there was more an overwhelming sense of profound beauty that I will forever cherish being privileged enough to be a part of that for my child and his friends and their late friend. 

Aiden passed away peacefully that night surrounded by those who meant the most to him.

* * *

Aside from his two great nanas passing away, Jaxon hasn't had to really deal with death before now. He wasn't overly close with my nanas and so even though their deaths upset him, the grief wasn't felt deep in his soul like it has been with Aiden. Aiden was part of his life, his childhood, his world. They hung out together, they laughed and played. They fought and made up. They got another year older and mature together. They did schoolwork together, they had sleepovers, went to discos together. I remember the last school disco they both attended in year 5. Aiden had a crush on a girl and he told me he'd talked to his dad. His dad had told him to be confident and ask the girl to the disco. So he did! And she said yes. Aiden convinced Jax to ask a girl he liked, which he also did but backed out of at the last minute as he was too shy.

To know someone day in and day out and then suddenly they aren't here anymore is a near-impossible concept for any of us to grasp. And these kids have to do this at 12.

Eddie and I have been careful to ensure that Jax deals with this in a healthy way. We've been encouraging him to talk and cry. We really don't need to though. Jaxon has an instinctive emotional side that never fails to surprise me. His emotional maturity and compassion is one to be admired. He's not afraid to show his emotions and he's not afraid to talk about them. Though he is still a kid and still learning, he has a heart of gold that really needs some recognition. 

When we heard of Aiden's passing the morning after, Jaxon was devastated. He sat in his room, tears streaming, looking at old photos and messages from Aiden on his phone. 

My mum and sister came over to give our boy a cuddle. My best friend turned up with a beautiful plant for him. Jaxon's Pop and aunty's and uncles called and text to express how sorry they were about his friend. 

Later,  I said, "Jax - aren't we so lucky that we have such supportive and amazing people in our lives?"

He paused and said, "Yeah...they're awesome. But Mum, I feel bad that they're all being so kind. It wasn't my brother that died." 

He felt bad that he was getting attention when he knew Aiden's brothers,  sister, parents and grandparents all felt the pain so intently.

He felt as though his grief didn't 'qualify', wasn't justified. Because he was 'just a friend'.

We talked and talked that night about how anyone can feel grief even if they aren't close to the person. 

And about how when someone passes away, theres nothing you can do. And people who didn't even know that person, but know the person hurting,  feel pain for the person they love who is hurting. 

He got it then, and he just looked at me and said, "our family is really cool aye mum?"

I'm so thankful to my friends and family for their heartfelt gestures that have helped my boy through this difficult time. My village rocks x

Jax decided he would like to speak at Aiden's funeral. He told me he wanted to make Aiden proud of him. With a little help in structure from me, Jaxon wrote the following piece. He was far too upset to read it himself in the end, so I did it for him.  But I think Aiden would have been very proud of his mate. This came straight from his heart, dedicated solely to Aiden - the cheeky skater boy with the gorgeous hair and the beautiful smile. 

Rest in peace Aiden Hayes

7 November 2005 - 27 February 2018

Hi my name is Jax and Aiden and I used to be best friends. We actually met when we were one year old and then became friends when we were 8.
Even though neither of us remembered meeting when we were babies we decided that because we'd met so young it meant we were basically brothers.

We had many sleepovers and hang outs. We liked to play xbox and camping out in the lounge.
I remember one time Aiden was at our house and we were eating hokey pokey icecream. Aiden kept pushing the hokey pokey bits to the side and then he announced to us all "I don't  like the seeds".

Aiden was always a really caring friend to me when I started Oratia in year 4. We got on really well and though he was much more sporty than me, he had a similar caring and compassionate way about him that my mum says I have. We got to go on school camp together in year 5 which was heaps of fun. We did the Burma trail together and like always Aiden was by my side.

When Aiden went into hospital my mum was sick too so I didn't see him anywhere near as much as I wanted to. I thought about him all the time though and would often text him with what I felt were messages cheering him on. I tried my best to still include him in my normal life by sending him pictures and things but I also felt so bad that he was stuck in hospital so unwell and unable to do these things with me.

When he asked Milo, Jude, Daniel and I  to go to the hospital to see him last week, I was really nervous and didn't know what to expect. But even though he looked so different, he was still the Aiden we all knew and loved.

He was so brave. He knew we were nervous I think and he asked us all about school, sports and things we were doing - even asking "hey milo do you have abs now?"
He reminded us of a water fight we had at Daniels birthday and we all laughed remembering it. Then he asked 'when I get out,  can we have another water fight?'

I'm sure he knew he wasn't ever coming out but he still skipped over the reason we were there and made us feel like things were normal even though that was so far from the truth.  I really wish we could have that one last water fight.

I can honestly say that my best friend Aiden was the absolute strongest person I have ever met, and probably will ever meet.
I was worried the other week about having a blood test but when I think about all Aiden has gone through,  I feel so proud to have been a part of such a warrior's life.
I feel really blessed that he chose me and his other mates to go and say goodbye to him and though that visit was probably the hardest thing I've done in my life, it was an extremely special experience that I will never forget. I will always cherish my friendship with Aiden Hayes. Love you man and I will see you up there amongst the stars.