Wednesday, 18 June 2014
18 th June
I thought I'd write an update. I'm not sure what to do with this blogg, but will definitely keep it open and update now and again. It's obviously not about Harry's progress anymore, but about the journey of a grieving family.
It's 14 weeks since Harry died. Some days it seems a long time ago and other's only yesterday. Grief comes in waves and can catch us off guard at times. Music on the radio, seeing pictures of Harry, particularly the screen savers we still have. Callum talk's about Harry and sometimes this can be unexpected, such as his questions about heaven and wondering if their are toilets in heaven. I explained that when you die you don't need the toilet. Callum thought that this was fab, as it meant more time for playing. He also asked if their were schools In Heaven and he decided that there were.
Callum loves wearing Harry's clothes. Though I am acutely aware that Callum is taller than Harry was at the same age and so Callum won't have many more months of wearing Harry's clothes. That will feel sad, when all Callum's clothes are new and not hand me downs from his much loved brother.
Callum loves playing with Harry's beloved Lego and is pleased about his new playroom In Harry's room. Since Harry had a bed, which was from the NHS and much of his furniture was moved out to create space to move and handle Harry into bed safely, once he became paralyzed from the waist down, that now all the equipment is gone, it leaves a large bare space.
I never wanted Harry's room to be a shrine to him though, so I am glad that it is bare and Callum can use it as a playroom. I am also pleased that Harry's clothes are not left In Draws and Callum can make use of them. Though I have boxed some particular favourites that just don't feel right to see Callum wear.
I feel we are doing really well for the point that we are at. We are thinking of the future and beginning to make plans for our new life. We are being kind to ourselves and very much enjoyed some couple time in Whitby recently. Granny and Grandad had Callum to stay for 2 nights, which he very much enjoyed. It was our 11 th wedding anniversary. Having spent our 10 th at diggerland last year, trying to create great memories with Harry, particularly as he had just commenced morphine to combat leg pain and our 9 th was spent in lgi, with Harry very poorly due to the side effects of high dose chemo and our 8 th was spent unpacking boxes as we had just moved house, though I do remember we managed a meal out! As you can see, we were overdue a relaxing anniversary break! We chose Whitby as we both love it, no big journey, wasting time in the car, so more time to play. I had forgotten how many memories we had of Harry in Whitby and In Between the fun and smiles, there were tears of sadness.
I think that is our life now, smiles, happiness, but frequent sad moments where tears sting our eyes.
You see the thing with grief, there is no ryhme or reason or rehabilitation program or protocol for treatment, it has no timescales for the healing process and must not be forgotten how emotionally and physically exhausting this thing called grief is. You can not see it, there are no physical wounds or scars, no bandages to make it better, no cream or lotion will heal it. It will always be there in Some shape or form. I gather that it is about learning how to live with grief and getting used to it, that helps. Time can only make that happen. Again there are no timescales for how long it takes to adjust. Then I am sure once adjusted, again, there will be no ryhme or reason sometimes for a temporary 'relapse'.
People say 'how are you?' and most people don't really want to know, that's life. Sometimes, someone will say 'No, HOW are YOU' and those people are the ones who know you are not really fine and want to know the truth. Some days are actually ok and other's are not. To be honest I would say most days are a roller coaster of emotions, as said, smiles, happiness and tears of sadness all in one day.
Whilst Paul was working nights one weekend, I drove Callum and I down to my sister's, which is just north of London. We had a lovely weekend. Callum got on well with his cousin Olivia aged 2 now. She is just old enough for them to play together and interact together. Callum, despite declaring that he doesn't like girls, was really sweet with Olivia and looked after her In the soft play area we went to.
This adventure down to my sisters, was a milestone for me, since I had not driven such a distance all on my own since Callum wAs born. I used to frequently travel distances, even with Harry, but when Callum was born car journey's turned into a nightmare! Also with my parents moving to Otley 4 years ago, there hasn't been the same need to make long journey's solo! I also guess that when Harry was either on treatment or when he'd relapsed, the unpredictability of his health, meant travelling solo for long distances felt like too great a feat for me to undertake. Since Paul works a lot of weekends, I always used to make a lot of plans for weekends and would travel to meet up with people. I have now taken the first step in knowing I can do the things I used to do, Callum was fab in the car, he was happy as long as 'One Direction' was playing, I hope they get off tour soon and make another album, the tunes were on replay in my sleep! I feel the trip was a milestone in my ability to move on and learn how to live again.
Since Paul has limited ability to get time off over the summer due to a restructure, new teams and management and my commencement of work in July, he has 2 weeks off work at the mo, whoop, whoop! We have just come back from Southwold, Suffolk, aka Sunnysands from Grandpa in My Pocket. We had a fabulous week, Really relaxing. We had the use of a beach hut on the seafront, which was brilliant, we could leave the buckets and spades there, have a cuppa using the calorgas stove or partake in a cheeky alcoholic beverage! It could get a little breezy on the seafront, so the hut provided the perfect shelter with a sea view! Callum loved the beach and we spent many an hour on the sea front! None of us were quite brave enough for swimming, but a paddle we did manage!
We took our bikes and made Walberswick our regular destination, where Mr Whoops' shop front is from Grandpa in my Pocket. Callum is getting good on his bike and even managed to ride on the road a little, sandwiched between daddy and I. I haven't ridden a bike much in years, so Callum's stopping and starting helped me too! We found a seafood restaurant on the harbour, which we have seen develop over the years, from just a shop to a restaurant, though we haven't visited Southwold since Harry was 18 months old, but this year has seen the addition of outside seating, perfect for a glorious sunny day and perfect for Callum, to fidget to his hearts content! The restaurant does seafood platters and we could take our own wine and bread, perfect - yum! The weather was so lovely the day we went and the rustic setting made us feel like we were in France.
We did take a day out of roaming the countryside to visit Pleasurewood Hills theme park, near Lowestoft. I used to frequent the theme park at least yearly throughout my teens. It was a massive throw back to 20 years ago, some of the rides have changed, but much was the same and I could tell Callum that he went on a ride that even granny and grandad went on! It was the sedate boat ride, which Callum thought was boring! There was a rollercoaster called 'the rattlesnake', which was very tame, but I could remember queuing 45 mins to get a go all those years ago. I also had a certain recollection that it was called 'the ladybird' when I used to frequent it. I asked one of the workers about the name, but they confessed they were only 21 and so they were only months old, when I had last visited! Good old Wikipedia could confirm that my memory was exactly right and it's original name was 'the ladybird!'
As mentioned above, we last visited Southwold when Harry was 18 months old. I could quite clearly picture him motoring along the promenade on his plastic trike. That was a happy holiday too. When we were out on our bikes, I did feel sad that Harry wasn't able to ever join us on family bike rides, though, I could picture him smiling at how confident Callum is on his old bmx bike now. I remember the day last October, when Callum insisted on having his stabilisers removed and Harry was helping Callum balance on his bike in the cul de sac next to our house. Harry was so proud when Callum managed to ride 20 foot without falling off! Callum was still just 3 then!
Our hearts ache without Harry, but our lives cannot stand still, we will endeavour to have new adventures, smiles will shine through the tears.
Friday, 23 May 2014
Link to the calendar tv feature
http://www.itv.com/news/calendar/update/2014-05-21/harrys-book-is-runaway-success/
Press on the link above to view the interview!
Wednesday, 21 May 2014
Calendar tv!
Tune into calendar tv tonight, 6 pm on ITV to see a short piece featuring Harry's book and Nuzzlet's farm!
Above is a link to buy the book!
Thursday, 15 May 2014
How are we?
Well, it's a difficult question to answer, because of course we are not fine, how can we be, it's only just over a month since Harry died, though it feels much longer.
We are doing our best to get on with life and create new routines and not sink into a deep depression. We have a massive piece of our lives missing. Our lives revolved around Harry's illness. Every plan we made depended on how well Harry would be as to whether we would achieve the plan. Towards the end, we made no plans, our lives became so small that only trips out for an hour at a time were possible. Our lives were mapped around Harry's care needs and the various care staff that came into our house each day. Paul went back to work in January and so I was Harry's main carer and I did what I could for Callum too.
Now Harry is no longer here, I guess the world is our oyster. We went to Northumberland on holiday the last week in April. The weather was mixed and when we were in the caravan, just the 3 of us, Callum's playmate was so obviously missing. It was good to get away and returning home feels a little more manageable being in our home surroundings, but the grief comes in waves.
We have lost our fantasy, our family of 4. We planned our family carefully, not having Harry until we were financially secure enough to do so, then waiting 15 months to conceive him, then deciding to have another child, with the aim to have a 2-3 year age gap, so that the children would grow up close in age and be good playmates. We achieved this aim, but sadly we couldn't keep hold of it.
Having something you so dearly wanted, then having fought to keep it, but finally having cancer take it, is so truly devastating.
We have to grieve the fantasy, the loss of what we set out to achieve and had for a short while.
We have to develop new routines and ways of doing things.
We are not ready to go forth and explore the world yet. We are not ready to have that expensive dream of a holiday, because currently our hearts are not healed enough to go forth and leap that far.
It's a case of baby steps and small goals.
Some times we are fine, then a trigger point will cause a wave of grief and depending on the social situation, depends on whether we hold our breath until the wave passes or if on our own, we may embrace the wave and have a few tears or a few moments of deep sadness.
I collected Harry's things from school last Friday. These included his school work that he did. When I looked at them properly at home I felt such huge sadness and loss, that there will be no more work, no more pictures, no more handwriting. Harry's reading progress book had the last book Harry read at school recorded and the title was 'fly high'. Very poignant I thought. The book was about a plane flying high and Harry really liked reading this book.
Having spent so much time with Harry in the last few weeks of his life, Callum had little attention from us. It has been good to get out and about with Callum. To meet friends up and go for walks on The Chevin. To get Callum out in the great outdoors has been fabulous. It highlights how small and limited our lives had become over recent months or even much of the last 2 1/2 years. We did achieve many adventures last year, but Harry's stamina was always an issue, we couldn't go for long walks on the chevin or long cycle rides. His health was very unpredictable and if he over did it one day, he would tire the next. We made the most of our time with Harry and I think that has brought me peace. We accepted that Neuroblastoma is one big beast in the world of cancer. Harry had already had second line chemotherapy in February 2012, when the initial chemotherapy did not clear his bone marrow. This TVD chemotherapy had harsh side effects, fortunately only 2 rounds were needed to clear Harry's bone marrow and enable him to return to the original protocol pathway. However, when Harry relapsed, we knew that his platelets were very low, around 40 and so he was not in a good place to recieve further chemotherapy. Any further treatment at that time would have caused him huge problems. We already had witnessed the side effects that could occur, for our family unit and for Harry, further treatment just wasn't the right pathway to follow and so we took life by the scruff of its neck and went forth and achieved so many adventures. The help from those on the way that fundraised for us to keep having trips, was and always will be remembered and treasured!
As you all know Harry lived just over a year post relapse.
We were told in June 2012 that he wouldn't make the summer, but he did and he made it through winter and saw the commencement of spring too.
Life was very unpredictable at times and managing his medication and trying to get that right was a project in itself. I was always keen to decrease Harry's medication when we could and pushed for this to happen, something that was a rare sight. Most cases have only seen increases in medication, not decreases and at times I got concerned that Harry suffered withdrawal side effects, another issue with too little information. This was also because Harry ended up on buprenorphine patches and not fentanyl and these haven't so widely been used in children and certainly not to the strengths Harry reached.
Towards the end, Harry ended up on such massive doses of drugs, it was a wonder he continued to function to the degree he did. I remember thinking that this increase this time will surely knock him out, but it didn't, until he commenced on Medazalam to calm him, the Friday before he died. Following the commencement of this drug, we never did have another proper conversation with Harry. I knew that when he started it, that this was the big boys drug and it would make him drowsy. However, I knew he he had reached the point of being too agitated due to the pain. Knowing him best and inconjunction with his McMillan nurse, whom travelled the 2 1/2 year journey with us, decisions had to be made re keeping Harry comfortable. The hardest decisions ever and decisions no parent should ever have to make.
Now our chapter of our life with Harry is complete. We are now a family of 3 and we need to get used to it. We will never forget Harry, he lives on in our hearts and remains apart of conversation at present. I wonder how I will feel in a year or two, when Harry's friends are older and Harry remains forever 6. I am acutely aware that the pathway of grief is a long and winding one too. As I may feel ok for a while, the passage of time may ease the pain, but at times it may not, as the years become greater for not having Harry with us than it did. The fear of forgetting what he sounded like, his phrases, the funny things he did. We have photos and DVDs to remind us I know, but even now I sometimes wonder if I dreamt that we had Harry.
Having attended an assembly dedicated to remembering Harry, at The Whartons school yesterday, I realise how much a part of the school community he was. There were many memories shared. Lovely memories about his positive attitude to life, his creativity, being a friend and being a part of his adventures, such as go-karting and diggerland. Although, it was very emotional, it was also lovely to know so many pupils respected him, had time for him and miss him. Even when he was in his wheelchair, some of the pupils shared stories about him decorating it, or showing off how fast he could go in it. Harry was initially frightened that the other children would laugh at him, when he was on his walking frame or in his wheelchair, but I believe his spirit shone through and respect is what he achieved. I hope when children see others in wheelchairs, they remember Harry and know that the chair is not a barrier to knowing the person sat in it.
Callum is now 4 1/2. I do look back and remember Harry at this age (March 2012). He was just finishing his TVD chemo, then he had his stem cells harvested, then he had a nine hour operation to remove his tumour then on May 16 th 2012 he entered LGI to commence high dose chemo and to have a stem cell rescue, using his own stem cells. This time 2 years ago, we had our final night all under one roof for 6 weeks. We knew what we were consenting Harry to endure could have killed him, it has killed others. We knew if he hadn't had the treatment, the cancer would have grown again and killed him. Having this definite knowledge made signing the consent form the easy part. Watching him suffer the severe side effects wasn't.
Seeing Callum at this age, I am beginning to realise how much Harry missed out on. We have accepted Callum's place at The Whartons School and have also signed Callum up to some induction sessions at school, sessions Harry was not able to attend. We are preparing Callum to start school in September and we can get excited about it. Callum has already expressed that he doesn't need any new school uniform as he can wear Harry's, which is lovely. I know the excitement around Harry starting school was taken away from us, due to his treatment and the side effects of radiotherapy, which meant he started school late and intermittently, due to further treatment, his stamina being low, the need for frequent transfusions etc, etc.
What was evident from the memories shared at the school assembly yesterday was how Harry went to school, despite being poorly, enjoyed it and frequently had a smile on his face. I have to say, we pushed him into school at times, knowing he would enjoy it once there, we needed the break from each other and as I know myself, mixing with others can be uplifting and lighten our mood when down. Isolating ourselves can be detrimental.
I continue to push myself into social situations, knowing the first one since Harry died is always going to be the most awkward. People don't want to NOT acknowledge our loss, but don't know what to say either. We too, are not always sure what to say or how to move on socially, but we are grateful to have you all here, to continue with us on this journey of life. I am truly grateful for Callum too, as my status as a mummy remains. He makes us remain sociable and he keeps us linked into our social circle being friends with the siblings of many of Harry's friends. I remain on unpaid leave for the present time, giving myself space to come to terms with our new life, particularly whilst Callum is at nursey. However, I am hoping to return to work in July. I have learnt so much about life, loss and bereavement, I know I am very much richer for knowing Harry, although my heart hurts and I know the knowledge and life experience I have gained has been so much more than any course could ever provide. The next goal is to keep my registration as a social worker, due for renewal in November. I hope I can achieve this smoothly, but if not, fighting the system I can do!
Wednesday, 14 May 2014
Our recent visit to Nuzzlet's farm
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