How are You?

I get asked how I am a million times every day.  The truth is, I don't know how I feel.  

I am angry and I often feel like I have failed.  I told Hunter on his first night with me that I would always keep him safe.  I didn't do that, I failed.  

Part of my anger is directed at Waitakere Hospital and the care that they didn't give Hunter.  To try and help with this I made a complaint to the Health & Disability Commissioner.  Well, they agree.  An investigation is under way with Waitakere Hospital.  I have mixed emotions about this.  On one hand I feel good, I wasn't just a grieving mother.  But on the other hand it means that in those days Hunter didn't have the best care he could get.

I have been having counselling and trying out spiritual avenues to find some comfort.  I haven't found my 'niche' yet but am enjoying seeing my counsellor.  

My next post will be the start of my letters to Hunter.  

"Normal"

After a funeral people go back to their lives and some expect that things would go back to normal for us.  This is normal now. For me normal is grieving for my son who didn't get to grow up, feeling a big empty space where Hunter lived, no sleep, hardly any food, tears, fear.  Normal is not knowing what to do with my hands and not being able to make eye contact.  

I have been suffering with anxiety in the month that has passed. I have lost all confidence with Cooper.  But I know that I will regain this confidence just as I know that things will get a bit easier.  Not today and not tomorrow but one day things will get easier.

The sun will shine.

Over the past month I have learnt a lot.  A lot about myself and a lot about other people.

I know exactly who my friends are.  There are people I thought were friends that aren't.  Some peoples selfishness has amazed me.  On the other hand there are people I thought I was just friends with on facebook because we have friends in common who have turned out to be the most amazing people.

I have learnt that I am a terrible communicator!  The reason I'm blogging.

I have learnt not to judge.  Life is short, why care what others are doing or thinking?  It doesn't matter so I don't waste my time.

I will never take my children or family for granted.  Not for a second.  When shit hit the fan every single member of our families were there.  They came from far and wide for us. 

Yesterday I learnt that the person I am today is the person I am going to be.  I was waiting to feel 'normal' again and like myself but I realised that this is normal, this is me.

And lastly, I have learnt that I am lucky.    

My Babies Funeral

Thursday 23rd May we buried our baby boy.  More than a hundred people from all over turned out to say goodbye to Hunter and support Mathew and I.

We arranged his service, we chose his bed, his resting place, carefully picked each and every song that would be played, we spoke and we carried is bed to where he now lies.

Mathew and I wanted to do as much as we could for our son.  Be as close to him as we could.  

We asked people to dress in bright clothes, I didn't want a room full of black.  

I am proud of what we did for Hunter. 

People say that a funeral is closure, I don't believe there is ever 'closure' after loosing a child.  In time I will learn to live with my grief but it will never be gone.

One day I will be able to put Hunter in a special place in my heart where I will visit him and remember.  

I will always have two sons and we will always be a family of four.  Cooper will grow up knowing he has a brother.  A brother with wings.  

The Days that Followed

The minutes and hours that passed after Hunter left us were a blur.  It seemed there was no noise in the busy hallways of PICU, no people, no doctors, no nurses.  No one but us and Hunter.

A lady came to take photos of him for us.  She took plaster casts of his hands and feet for us.  The nurses that cared for Hunter took glittered prints of his hands and feet for a book they were making for us.  Some of his black hair was put in the book too.

These were things we could take home with us. 

We washed Hunter with warm water and baby soap and got him dressed in the only outfit that was small enough to fit him. The outfit he would stay in.

We took Hunter home with us that night.  We strapped him in his car seat put his hat on, wrapped in a blanket so he wouldn't get cold.

That night he slept in his room for the first time.  

20.05.2013

HSV?  But how?  

I knew that I have antibodies to HSV-1 but have never had a cold sore.  Mathew gets cold sores on occasion but not recently.  
Babies can get it from Mum if she has Genital Herpes and passes it on through birth.  But I don't have genital herpes?  I didn't give birth vaginally?  I don't have a cold sore anywhere to give him?  This didn't make sense. I had a lot of questions but it wasn't going to save Hunters life by asking them now so I accepted it and went back to concentrating on Hunter.

By about mid day with a failed liver, failing kidneys and an abnormal brain his blood pressure was now very low and his heart rate was very high.  

We were told that they still had a couple of things to try.

At 2pm we were booked in to see a Social Worker.  That's weird, we thought.  Why do we need a social worker?

Also at 2pm a doctor was coming to do an EEG on Hunters brain.  This was going to take about an hour and we couldn't be there when they did it because we were not able to touch Hunter.

"That's OK, we are seeing the Social Worker at 2 anyway", I said.

Our doctor said he would come too so he could chat to us about what they were going to do next for Hunter.      

2:15pm on May 20 2013 our doctor told us that Hunter was going to die.  He had multiple organ failure and no brain activity.

Numb.  Shocked.  Devastated.  Totally blind sided.  Cold.  

Hunter was going to die but we had the choice of turning off his Life Support.

I replied to the doctor "But he's not on Life Support, how are supposed to turn it off if he's not even on it?"

I was freezing.  I was so cold I couldn't think.  My baby was dying.  

I called my Mum who had just left with Cooper, I told her to come back because we were going to turn off Hunters Life Support.  She told the rest of the family.

I thought we had a few days before we had to do it.  Wrong again.    He was going to die today.

We arranged for him to be baptised Catholic like me.  And we gave him the name Matthew for his baptism.  Hunter Christopher Matthew Gray. 

At 16:50 on May 20 2013 our baby boy took his last breaths in my arms.  Hunter was in my arms and Mathews arms were around us both.  

The Virus

Our world is falling apart and we can't stop it.  We can't control it.

Hunter would get better, I told myself.  We would live in Starship for a few weeks or maybe a month but pretty soon it'd all be behind us and we would be able to show Hunter the photos we'd taken when he was older.  We'd tell him how sick he was but that he fought for Mummy and Daddy and got better.

Another night with one hours sleep.  

The morning of 20 May Hunter was chewing on the tube in his mouth.  "Is he hungry?" I asked his nurse.  No, he wasn't hungry.   He was having seizures and was booked in for another CT Scan.

Mathew and I overheard someone say that there was no bleeding on his brain but that the brain looked "abnormal".  Abnormal?  Abnormal how?  Abnormal why?  

We asked questions of our doctor but he couldn't give us an answer yet, he needed the specialist to read the scan.  Right now, he told us, we need to focus on his liver.

Around mid day we were told his Kidneys were failing.  

They also knew the cause of his illness.  The HSV Virus.  The cold sore virus.   

Giving his Body a Break

We had a rough night.  

Mathew and I stayed by his bed all night except for a shower and a one hour nap from 3-4am.  When we were power walking back down to PICU I said to Mathew "yesterday was bad but today will be better". 

They didn't give us his blood results through the night so were anxious to hear how he'd improved.  Some levels were up but others were down.  Hunter has a 50/50 chance of survival.  Well Mathew and I decided to take that as a positive.  50% is still a pass right?  And besides, we'd given him a strong name, he'd be strong for us.

Hunter was making little cries which I was able to settle him and calm him, like a Mum should.  We thought this was a good sign, he had fight in him!

Later that morning Hunter was still having the apnaec episodes.  The Clinical Director came in to see Hunter and decided that his body needed to have a rest so they were going to put him on a machine to help him breathe.  Just to give his body a break.

It wasn't until much later we would learn what this was.  Life Support.

Today was not better.