Tuesday, 28 October 2014

The listening project radio 4

Tomorrow Wednesday oct 29 th Janey Webb and I will be featured in The Listening project on radio 4 at 10.55 am.
We did an hour long talk a few months back about Harry and the feature will be an edited version! 
The hour long talk will be archived in the national library!
No idea how the edited version will come across, but proud to make a contribution!

Wednesday, 8 October 2014

Harry's birthday.

8 th October 6 months on.

Today marks 6 months of living without Harry. The truth is that it doesn't get any easier to live without him. There are days when it seems very hard to continue to function and the tears of sadness are harder to push back behind the mask and other days whereby I can function and get on with life and the tasks that lay ahead. 
I last wrote on here at the beginning of September just before Callum started school. On his first day I took photos of Callum in his school uniform and as you can see I got the closest I could to having both my boys in school uniform together, by Callum holding his brother's picture whilst I snapped him! Callum felt very proud to do this too. I took Callum into the main school entrance to hand some forms in and immediately found Harry staring at me! The book that Harry's teacher made up, which had Harry's photo on the front, was propped up on the far wall, facing me! It felt that Harry was still a part of the school. Seeing the photograph made me feel very emotional, but I held it together for Callum! It was a beautiful sunny day and some of us mum's met for lunch after and managed to enjoy the rays, before pick up time. 
Then on Friday 12 th September it was Harry's 7 th birthday. It was a very hard day. Tears were not far away at all. Paul and I went for a walk whilst Callum was at school and we talked about how Harry brightened up our lives and how excited we were when he was born and of course of our great MISS of him. We wanted to mark Harry's birthday as a positive and so when we collected Callum after school we went and bought a helium balloon and walked up to Harry's tree, where we sat on the bench up there and looked out at the stunning view. Callum let the balloon off into the sky and we watched with tears of sadness as it floated high up, until it was a tiny dot in the sky. It has always been a tradition in our house that each of the boys got a small present on the other's birthday, so up on the chevin we gave Callum a small present to open, it was 'mayday' the fire engine from the film 'fire and rescue'. Callum was excited and pleased to receive this. We then headed down and met Granny and Grandad up at our house for fish and chips. I'd made buns in the morning and put a candle in one for Callum to blow out. He wanted to sing Happy Birthday, which he mainly did on his own as we all had huge lumps in our throats as it just wasn't right that Harry wasn't physically with us. I felt it was very important for Callum to understand that it was Harry's birthday and that he is still very much a part of our lives. We bumped into Callum and Harry's nursery owner on the Sunday and Callum was gushing away to Anna how Harry had, had a birthday on Friday and that he was 7 now, but up in heaven. He told her how we had let a ballon off and had fish and chips for tea. Callum was proud, not sad about it all. Children are wonderful in their approach, so fresh and vibrant! 
The Whartons School's parent association have bought a small wooden play pirate ship for the playground with a plaque 'Harry's Galleon' attached and this was opened by Callum snipping the paper chains that his classmates had made. Just prior to this, the school had, had a short school assembly, whereby a shield that we have bought called 'the Harry Buckley Award for Creativity' was introduced. We were able to attend this assembly, which focused on Harry's love of all things crafty and it was lovely to hear the children talk about their key memories of Harry making things. The award will be presented each term to a child whom has been the most creative. Creativity was discussed and how this can be in many mediums, such as dance, music, crafts, paints, models, poetry etc! The school will be divided up into 3 age groups, each age group will be given a term whereby a child can win the award and have their name engraved on the shield. It feels a positive way of keeping Harry's memory alive, which I feel will help the other children as well as Callum. 
So the weeks have drifted by and we find ourselves in October. The weather has turned and my sandals have finally been swapped for winter boots. 
I found out at the weekend that a girl of similar age to Harry, has been admitted to LGI. I read the entry on Facebook in huge disbelief that she had cancer for the second time. I clearly remember her coming onto ward 31 with her parents when she was first diagnosed with a Wilm's tumour, we shared a bay for a few days, before we went home and they were left to embark on that hugely strange introduction to the world of oncology. Well, it seems it is not a relapse of Wilm's, but a new cancer has emerged, probably a Lymphoma. Having been cancer free for over a year, the nightmare begins again, the tests, the anaesthetics, the biopsy, the cannula, the frequent blood tests, the port being re-inserted, the tears, the signing of consent forms, THE UNKNOWN. 
Callum and I visited Ruby and her mum at lgi on Sunday. They live in Hull, which complicates things further, but Leeds is the nearest oncology specialist centre. We took art and crafty things for Ruby and a microwave meal for mum. 
Prior to going I asked Callum if he would come with me and he had no hesitation in saying yes. I showed him a picture of Ruby in bed at lgi and he immediately spotted the toy minion she had and so he wanted to add a packet of haribo minions to the bag! A while after our conversation, whilst Callum had breakfast he said that he didn't want to go to the hospital. It was very clear that Callum was thinking about Harry. He drew a picture on the competition page of his Peter Rabbit comic of Harry's face, with a tube coming out of his nose, which was attached to his feed bag. Not the average picture drawn by a 4 year old! I had to cut the picture out and send it off, I did add what the picture was about! 
Then Callum said that he wanted to go to the hospice and see Harry again. This began unfolding a conversation I hadn't expected! I had to remind Callum that he saw Harry's body being transferred by daddy into the red coffin and that he was no longer at the hospice. This then led us to discuss where Harry's body was. We never actually told Callum that Harry was cremated and what this meant. I had felt at the time that it had been enough for Callum to have seen his dead brother, at home, in the hospice and going into the coffin. We talked to Callum about the funeral - 'celebration of Harry's life' and the fact that Harry was in the coffin and how we left the coffin at the crematorium, but we never went into detail about what a cremation was. So Sunday, led to a discussion about cremation. I found it useful that we haven't scattered Harry's ashes and could therefore let Callum hold the cardboard tube that keeps them safe! We have a log burner, so he knows how logs turn to ash, so I described how Harry's body was burnt and the tube held the ashes of Harry's body. Of course Callum  wanted to see the ash, but not wanting to open the tube up properly, but knowing it's not entirely sealed at the bottom, by handling it, a few grains of ash came out! This satisfied Callum's curiosity anyway! We don't plan on scattering Harry's ashes anytime soon and perhaps this is a good thing. We will know when the time is right and perhaps this will be when Callum is older and properly understands the process and can help more meaningfully with the ceremony.
Having had these unexpected conversations, we made our way to lgi! Callum was keen to get all the craft materials out and very quickly glue and glitter was the order of the moment! I'd forgotten how glitter gets everywhere, but one of the few positives of hospital is the fact the cleaning is done by others! Ruby had a cannula in her hand and whilst there the nurses tried to extract blood, which seemed a long and difficult process. Being the visitor this time and not the parent it struck me what our children have endured to try and conquer cancer. Amongst oncology friends and in the hospital there is a tendency to 'normalise' it all. The fact your child got through a part of treatment without entering intensive care, seems to minimise what they went through. The amount of needles; fasting; transfusions; chemicals; machines; tests;  prodding and poking day and night;  the adverse side effects; the vomiting;the temperatures; the infections; the tears; the worry; the inability to confidently say it will be alright. None of this can be normalised - EVER! Yet it is a must to try and achieve survival. It also struck me how as a parent, we have to hold it together, keep the screaming inside, whilst being the bystander to it all, because you have to in front of your child. The trouble is, when entering the world of oncology for the second time, the naivety has gone. You know too much already. You already have an awareness of the precarious path ahead.

As I wish Harry was still with us I am simultaneously glad his pain has ended. Callum seems so happy and calm these days, something I feel wouldn't have been achieved if we were still fighting to keep Harry alive and juggle his care needs with Callum's.  I feel proud that we let Harry have as much dignity and quality of life as possible. He was able to be a part of so many peoples' lives and I know people are doing fundraising activities in his memory, which gives us a warm glow. 
So tonight Harry,  6 months ago, you flew away and you gained your angel wings. Your pain ended and you became free to whirl around the skies creating new adventures. We love you to the stars and back and a zillion times around the world -Always and Forever xxxxx