Sunday 23 December 2018

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  

Wednesday 18 July 2018

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. 


Tuesday 27 March 2018

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.

Tuesday 13 March 2018

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.



Tuesday 6 February 2018

Twenty eighteen is well underway - the school holidays are drawing to an end,  and with this marks some Firsts we've decided to repeat.
School starts tomorrow and for various reasons, we made the decision with the girls input to change their school this year. It is Meisha's last year at primary and Olive will be year 2.

One of the many reasons for the change, is Olive has been suffering from anxiety. Changing her school and throwing her in a whole new environment may seem counteractive to dealing with this,  but for numerous reasons, I feel the new school is actually better equipped in their approach to helping kids with issues such as these. I'm hoping by changing the girls now, while Olive still has Meisha there for support for another year, that we can tackle this head on before it becomes debilitating for her. As you all know, I myself suffer from anxiety and at points it has really affected my day to day life. I hate seeing her go through this and knowing I can't take it away for her.

Being a child, it's hard for Olive to understand what's happening in her little body. She gets a sore tummy when she's anxious or worried which leads to her getting extremely upset. For her, it is very much physical and she finds it difficult to voice her concerns. We try our best to talk through it and come up with plans with her to make things easier - so far we seem to taking small steps of progress. A lot of the time, even talking about school makes her tearful and the stomach pains start.

For a long time, I couldn't talk about Olive's birth without crying. I've talked about it plenty on here, and often I wrote posts with tears streaming down my face. The emotion that comes with such a massive event is life-changing, and sometimes all too consuming. Now I can talk about it easily, though I don't often need to these days. I've told that story many, many times now and each time I tell someone new, some of the dramatics of the event gets chipped away. The memories are etched into my mind - forever having their place as one of the hardest times of my life. But the memories aren't as emotionally charged now. Now they're facts - something that happened, that occurred, but now the emotional charge has been shifted.
I've learnt to speak openly about Olive - I will answer any question or query, so long as I know it comes with good intentions.

Sometimes though, without warning, something can throw you straight back into that moment and everything comes flooding back.

Today Mum brought over my pregnancy notes from my midwife. I had the most incredible midwife. She is an old friend of the family. In fact, she actually delivered me when I was born! I had her with all three of my pregnancies, and I am so grateful that I did. She was wonderful with all of my births, but when Olive came along, she was just amazing. Because of her ties with our family already, I felt so comfortable with her and trusted her to take the utmost care of Olive and I. Which she did.

She has retired now, and has returned notes to her women who she looked after. I'd read the hospital printout notes of Olive's birth in the past but they were very factual - date, time, weight etc. These handwritten notes were the true insight into what not only Eddie and I, but all the staff who looked after us went through that day as well.

As I've said before, none of our doctors and nurses had seen a giant congenital melanocytic nevus before, so this was all new to them too. Reading through my notes made tears fill my eyes, as it brought back the memories of the day my darling daughter was born.

Her notes are just as full as Jaxon and Meisha's are from their births. But while theirs are filled with entries of how feeding was going and how I am feeling, Olive's are filled with concerns. Almost every entry contained an observation of  'birthmarks',  'pigmentation', congenital melanocytic nevus'. Each one documenting the next step in diagnosis and testing. Referrals for ultrasounds and appointments with dermatologists, paediatricians, requests for blood screening to test for chromosomal disorders and deficiencies.

There is a multitude of entries from different paediatric registrars and consultants, nurses and midwives. There is a quickly scrawled entry from when Olive was merely an hour and a half old requesting written consent for them to take medical photographs. Eddie and I realised as we read through this that we've never seen these photos. Some of the first photos taken in our daughters life and we've never seen them.

There are notes about how Olive had blood in her nappy from skin torn from the thick, sticky meconium - she wasn't even a day old!

I cant help thinking that while all these concerned comments, entries, notes were being written in my chart, what they presented to my face made me feel differently.
While Eddie and I were afraid, the staff caring for Olive and I must have been also. A vulnerable new baby comes into the world on your watch and you've never even heard of the condition she has, let alone seen it and cared for somebody with it. Yet, each one of those people were reassuring and friendly. They took care of my baby and I with respect and professionalism. They all told me I had a beautiful daughter, and whether they truthfully saw Olive's pure and absolute beauty, and don't just say that to every new mother, I'll never know. But I am thankful to them all for treating us just as another mother and baby, and not making me feel like 'the woman in room 101 with the birthmark baby'.

There is one note that caught my eye. It was written the day of her birth at 11am. Olive was born at 10.06am so she was not quite an hour old yet. It quickly (doctors scrawl!) outlines the issues she presented (her 'skin lesions' and her breathing difficulties) and underneath is the word Plan, underlined. There are 3 things on the list.

1.  Photographer and get dermatology opinion
2. HUSS & USS spine
3. Normalise and feed.

Normalise and feed. This part actually made me upset reading through my notes, and I couldn't stop crying for the rest of the read. It doesn't make me sad upset though. Its more of a 'grateful upset'. The doctor who wrote this was the paediatric consultant who was working the time of Olive's birth. I'm not going to name him here, but he was called to theatre to look at Olive's skin. En route to theatre, he was called again due to respiratory distress from Olive at just 3 minutes old.

This man was the first person I ever heard say the term Giant Congenital Melanocytic Nevus. He was the person who, amongst a whole lot of chaos and fear, brought light to our situation by telling us what he knew of the condition and by telling us our brand new baby would be just fine.

And his entry into my charts were telling anyone else who read it how to deal with us - normalise it. Because, while IT (the condition) wasn't normal, this little baby WAS normal. She was as normal as the baby in the next room and the next. Sure she may have looked different, but hey! Don't we all?

I feel forever grateful to this doctor. Our lives could have certainly taken a different turn had we encountered someone not so calm and accepting that day.

I'd like to go and visit him soon and introduce him to nearly 6-year-old Olive. And tell him thank you, for all he did for us. And hopefully, show him a little girl who is happy and settled at her new school.