tag:blogger.com,1999:blog-88833103781019547852024-02-22T03:50:52.642-08:00Harry's ProgressSarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.comBlogger250125tag:blogger.com,1999:blog-8883310378101954785.post-10029776352610802832021-11-12T15:11:00.001-08:002021-11-12T15:11:50.296-08:0010 years on from hearing those words 'Neuroblastoma Cancer'<br>
<br>
So it is 10 years since I first heard the words Neuroblastoma Cancer which ripped our families lives apart and has forever left my heart shattered. 10 years since I had to put those big girl pants on and learn how to 'dance in the rain'. To learn how to adapt the life I thought was evolving and take a different turn. <br>
I suddenly gave up work for 2 1/2 years. I was in my prime....going places...it came to a halt. I had to learn to not plan or at least learn to accept if a plan happened that was a bonus. That was so hard...just as it has been for everyone over the last 18 months with the COVID pandemic. <br>
But going back 10 years, Callum was 2 and Harry 4. Those toddler years and tantrums drawing to a close and a more sophisticated life was on the horizon. It was like a record being scratched in the middle of a symphony. Living with Harry's cancer meant being up in the night again, sleepless nights....this was how it was for 2 1/2years. Even when he was well I would lie awake wondering how long the good times would last.....but just like Dory we had to 'keep swimming'. Living with the knowledge that Harry was terminally ill...never knowing quite when his time would be up...feeling elated he reached his 6th birthday ...I mean that's a topsy turvy world.<br>
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But yet within those 2 1/2 years that Harry had cancer we met some amazing people; had the best times and soaked up the phrase 'live every day as if it was your last.'<br>
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Friends pulled out all the stops and enabled us to creat some fabulous memories. Those memories are recorded in photo books that Lucy likes to look at, enabling her to get to know the brother she'll never meet. This has a flip side as she knows about death already.<br>
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Life froze after Harry died...the fog set in and I know Harry's death deeply affected so many and I think I realise this more so now than I ever appreciated at the time. <br>
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Grief is consuming....it us under estimated...taboo...not talked about. Grief can be so debilitating...society does not have a healthy place for grief and yet to grieve and be supported to do so can really help us learn how to live with grief...to walk along side grief rather than letting it consume us or affect us physically. <br>
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So Harry died in 2014 and the last 7 years have been about how to live a different life to the one I thought I was going to live. <br>
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I never ever thought I'd be a mum again at 41. I'm not going to lie...for me being a parent in my 40s has been hard on so many levels. Lucy is a force to be reckoned with and I do let her get away things the boys never did....but then the pandemic hasn't helped.<br>
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I started 2020 with so many plans, the move again to a more sophisticated life was on the horizon, I was planning nights out, fun things just for me...but COVID happened and again life took a twist. All those coping mechanisms myself and my family had developed came crashing down. Our annual trip away over Harry's Angelversary was not possible....nothing felt possible...at a point when the last thing I wanted was to spend time just with my household...that's exactly how the forthcoming weeks was played out. I was ready to be a social butterfly again...but the world came to a halt. <br>
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Grief set in again in a different way. Trauma revisited as COVID triggered memories of how life in 2011 came to a halt. <br>
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Last year was a rollercoaster... lockdown..eat out to help out....the tiers system..lockdown...then the road map...oh yay we can plan...but oh no you can't, because bubbles then collapsed left right and centre. <br>
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We are now in a period of uncertainty for so many reasons, but at least I'm getting out and rebuilding a life. I'm not sure what my coping mechanisms are any more, but I'm learning and adapting. <br>
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I'm definately a different person. I'm very aware of the fragility of mental health and how we need to break down the stigma still associated with this. It's acceptable to take time off for physical health issues, but for mental health and self care, to help repair and heal...there is still a very long way to go. <br>
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I have learnt to live so much more in the moment and have learnt the value of mindfulness. Learning that if I can't control situations I can control how I react to them....learning that I have no power over the hand of cards I have been dealt, but I do have power as to how I play those cards. <br>
I have learnt what it's like to be on the other side of a social care assessment and continuing health care....to feel that exhausted carer with not much left to give and though I wish I did not know, it has given me a depth of insight into the daily lives of many of the people I try and support on a professional level.<div><br></div><div>I also experienced the benefits of the benefit system, but also the perils that people talk about...for we got a letter several months after Harry died to say they had paid us too much and we found ourselves owing money back...to this day we still don't know why...But we fought and lost and paid the money back over a period of time....thankful to be back in employment and no longer in need of the complicated benefits system!<br>
<br>So, I wonder what the next 10 years behold. The greatest tool to have is learning to adapt, accept those different paths and remember to Live, Love and Laugh. <br>
<br></div>Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com2tag:blogger.com,1999:blog-8883310378101954785.post-54784761570823010872018-01-22T13:52:00.001-08:002018-02-04T14:18:02.568-08:00Jan 2018<p dir="ltr">Apologies for not writing on here sooner. Welcome to 2018. </p>
<p dir="ltr">So Lucy Mia Freya was born on July 6th. <br>
Via emergency c-section.<br>
So not the birth i wanted i know they rarely are, but i had pleaded for a planned c-section and the result to placate me was to book me in 3 days after my due date. Lucy was born 2 days before her due date!<br>
Following a visit to hospital due to having a bleed, but was told it was a 'show' and brown blood was normal, i continued to bleed. I saw my consultant for a sweep a few days later to again be told the brown blood discharge was normal. I had period pains and the week pre Lucy being born felt like early labour to me. At my sweep i was 2 cm dilated. <br>
However, as feared things changed on the evening of the 5th July after Paul had left for his night shift. At around 9.15pm i thought my waters had broken, but upon inspection i was haemorrhaging red blood. I quickly sit on the kitchen floor and phoned 999. I really thought i was miscariaging and was terrified.<br>
I phone my dad to come up and stay with Callum and manage to reach Paul to come home.<br>
I get blue lighted to Harrogate hospital.<br>
Apparently it was heaving so i say i'll go anwhere, but as i'm booked in that is where i go, they were afterall getting extra staff in.<br>
So i arrive and get taken to the delivery suite, but get a slot in a room of several pregnant mums all with some complication or another and all at various points of pregnancy.<br>
So no privacy. Again i am asked all the questions about my family and again i have to mention Harry re previous births and again explain that he has died.<br>
I discuss my desire for a planned c section. I am asked to explain why i want one. Well because i am haemeraging blood for one and terrified that my baby will die. I then explain about Harry, aware all and sundry will hear too and that is not fair to them and me. Nobody reads my notes!!<br>
My blood pressure is through the roof. I keep saying it's anxiety, they test for pre eclampsia as is routine. I have to take tablets to bring my blood pressure down. Paul is with me and feels helpless and powerless.<br>
I need a wee and am told to use the toilet. I am bleeding, but told to put a pad and pants on! I refuse and a bed pan is reluctantly brought to me!</p>
<p dir="ltr">At 4am i accept nothing will be done to induce me and i am told my case will be discussed again at ward round. Knowing hospitals i knew this could be mid morning, so i suggest Paul goes home to get some sleep. </p>
<p dir="ltr">I am left alone, lying on my side, not daring to move as my baby girl's heart beat is being monitored and it keeps going up and down. I have to buzz periodically for assistance, nobody routinely checks me.<br>
I use my mindfulness techniques to keep me focused.</p>
<p dir="ltr">The point of mentioning all of the above in such detail is that for me and my mental health, i wanted to avoid being in this situation. It brought back too many flash backs of Harry. This brought tears to my eyes and again this is all misinterpreted. I was grieving all over again, thinking of Harry, but nobody knew this. I kept having different people answer my call button. One doctor seemed to get me, but then he seemed to be bumped off by a consultant whom sadly did not have an empathetic bean in his body. <br>
So wait till morning i did.<br>
Then at 8am my contractions start. I can't reach my phone to contact Paul.<br>
I monitor them for 10 mins, then realise they are coming close together. 8am signified the change of shifts and doctors.<br>
The new consultant comes and sees me and i tell her about my contractions. She does an internal inspection and finds that the umbillicol chord is blocking the entrance for a safe natural delivery. She was completely different in manner to the previous consultant. She seemed to have read my notes and was aware i had requested a c section in the first place, i felt joyous at being helped and being listened to. I sign emergency c section papers and get rushed down to theatre. I call paul to come back.<br>
Since the spinal block did not take affect quick enough i had a general anaesthetic too.<br>
I missed seeing Lucy come into this world. Paul missed her arrival too. Due to having a general he was not allowed in theatre. <br>
He was terrified too as though Lucy was born at 9.02am he was not informed of her arrival till 9.30am, but also not told if she was ok till he was able to hold her some 30 mins later.</p>
<p dir="ltr">So the arrival of Lucy was traumatic.<br>
I felt very aggrieved about this, as i had tried very hard to articulate myself during my pregnancy to have a controlled birth. Something i felt i needed.<br>
I feel in some part i do suffer from post traumatic stress disorder. Not all the time, but i guess due to being frequently in a medical environment because of being pregnant, it brought back a lot of flash backs for me. I was also concerned about my age, disabilities etc etc and i was failed. <br>
Usually i can control my flash backs which to be honest in the main part are not frequent, but the hospital environment brought it all back and i think mainly my lack of control of events brought back how i felt about Harry at points, particularly in the last 3 months of his life. I was never in control re lucy's birth. I was never listened to. My notes had never been requested re my previous births. Basically i had no trust in the system. </p>
<p dir="ltr">For me i needed to control events as far as was possible. If i had been given a planned c section at 39 weeks the above would have been avoided.</p>
<p dir="ltr">My stay in hospital was filled with each member of staff asking me if i had other children and ages. Again i explained each time about Harry. Well the woman in the next bed had just had her 3rd child, so i could hear from conversations and i wasn't going to deny that Lucy was my 3rd either.</p>
<p dir="ltr">This went on for the 2 weeks after Lucy's birth as i saw different midwives and each asked me if my first.</p>
<p dir="ltr">Again this happened at my 6 week check at the doctors!!!</p>
<p dir="ltr">I have to say the first few weeks of having Lucy was a lovely whirlwind with Callum being off school. We visited friends in Scotland and went to Dumfries in our caravan with Lucy being 3 weeks old. We went to kettlewell for the scarecrow festival and stayed again in our caravan, when she was 5 weeks old!</p>
<p dir="ltr">When callum went back to school, it all hit me. The birth, having Lucy, what to do all day as Callum was at school. My fear of baby groups, meeting new mums, talking or not talking about Harry, but most of all Harry's pending 10th birthday on 12th sept. Oh how i suddenly really missed him. Lucy reminded me of Harry, which brought great memories, but sadness too. </p>
<p dir="ltr">I suddenly felt paralyzed. I ended up in uncontrollable tears when taking Lucy for her 8 week injections. I told myself it would be fine as i'd had no issues taking the others.<br>
What i didn't bank on was whilst holding Lucy tight i had a flash back of the numerous times i had held Harry to have injections. Tears rolled down my face.<br>
I thought i had booked in with a well known nurse, but she was on holiday. The nurse knew nothing about me and again misconstrued my tears. When i explained about Harry i also garbled on about everything else. I was an emotional wreck.<br>
I had been trying to put Lucy's horrible birth behind me, but the way i was not listened to, was how i felt many a time when managing Harry. That horrible helpless feeling.</p>
<p dir="ltr">I endeavoured to get some counselling and did this via Candlelighters. A week later i had my first session.<br>
3 sessions later i felt more me again. I had attended a baby group and also i had written to my consultant stating my concerns over my care, despite my continued efforts to emphasise my anxieties and reasons for wanting a planned c section. I wasn't sure what i would achieve, but via writing the letter i felt i had put some closure to Lucy's birth.<br>
I eventually was contacted by my consultant and invited in to chat to him. Until he had got my notes of Lucy's birth i don't believe he knew how i was admitted etc. I had seen him in passing after Lucy's birth and the way he reacted was as if i got my wish for a c section.<br>
Upon my discussion i felt he was sorry he hadn't given me a planned c section.<br>
He also was able to say that my care was substandard in the sense that it had been unfortunate that upon every visit i had seen someone different, so my discussions around my anxieties were never followed through. He also said that my notes from my previous births should have been requested, but hadn't.<br>
Whether lip service, the meeting made me feel better and i felt i could move on.<br>
I also wanted to highlight the importance of listening to patients, particularly when they have had trauma in their lives and openly discussing anxieties. These are real and are as debilitating as physical problems. <br>
I very much wanted to get across that not only did i have to heal physically from the c section, but mentally as well.<br>
I felt he got this and he said he will take on board what i had said and he has learnt from my experience. I will never know, but i have tried to ensure others are listened to more.</p>
<p dir="ltr">Lucy is now 6 months old.<br>
Callum is so proud to be a big brother. It seems to have helped him. He does still very much miss Harry. He wishes we were a family of 5, which we are, but not on this earth. </p>
<p dir="ltr">I have been to a few baby groups and met a few mums now. Sometimes i mention Harry, sometimes not. It helps that a couple of people i know have recently had babies and so already know all about Harry.</p>
<p dir="ltr">Lucy has a smile like Harry's and has the ability to put a smile on other's faces, just like Harry did. Lucy means light afterall.<br>
She is feisty like both my boys. <br>
She is gonna have spirit and create much mischief! <br><br></p>
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Turning 40 last year and seeing Callum grow up so much in the last year plus, made us really think and we decided to throw caution to the wind and just see and here we are!! </p>
<p dir="ltr">I can't say in the first 2 years after Harry died that i wanted another child. Paul did, but I wanted to reclaim my life, do things for me. Find ME. <br>
I felt I should be grateful for what I have, 1 healthy lovely boy, whom we have worked hard to nurture after the turbulent time we had when Harry had cancer.<br>
However, I have to say a turning point came when someone I know was having a baby in September 18 months ago. The month Harry was born. It was not someone I know well, but a work colleague. There was baby talk in the office. I realised that i was turning a corner. Having felt so exhausted from 6 1/2 years of feeling completely depended upon, because just as life was feeling to become a little easier as Harry turned 4 and Callum approached age 2, sleepless nights began again with Harry experiencing what we later knew were symptoms of cancer. The sleepless nights continued throughout harry's 2.5 years of living with cancer, leaving me exhausted when he died and not in a good place to commence the new journey of grief and learning to live without Harry. <br>
Therefore the mere thought of babies exhausted me. The thought of that dependence, sleep deprivation. It wasn't for me. However, slowly as I put myself back together, reclaimed my life, nurtured Callum into a much more confident boy, got my marriage back on track and career wise felt back in the saddle, well, perhaps anything was possible. I realised life isn't for many of us this well set out plan as I believed in my early 30s. Doing the sensible thing I thought by having 2 boys close together pre 35, pre the so called danger zone of being classified as a geriatric Mother! I chose and had my boys at what I felt was a sensible age. Careers established, mortgage secured, smug maybe, for I was bringing 2 boys up in a financially secure environment.<br>
But then cancer happened. My healthy boy Harry, was no longer healthy. We were suddenly no longer financially secure as i went onto unpaid leave for nearly 2 years. Applying for benefits to help us meet bills. <br>
The rug was well and truly pulled from under our feet.<br>
However, I learnt how to live in the moment and treasure the good days out we had with Harry. I filled several photo books with memories to take me into my old age and to help Callum remember Harry. They are also all Harry's sister will have to help her know her courageous and funny older brother as well as our stories.</p>
<p dir="ltr">So being pregnant following the loss of another child brings its very unique issues, but issues people are soooo not aware of. <br>
On top of the usual emotional and hormonal state that pregnancy can bring, there are added feelings that professionals do not consider.<br>
Feelings of guilt, that i am replacing Harry, never possible, but i had a massive wobble when i found out i was pregnant as i know i will have to redistribute some photos of harry to make room for ones of this baby. She needs her photo on the wall too and i never want her to think she is not good enough.<br>
So for me, a hurdle has been getting my mind set on where to redistribute some photos to. Not a mission accomplished yet, but i have planned it out and feel ready to make room for our new addition.<br>
Harry will always be a part of our family and his picture will always be on our wall. </p>
<p dir="ltr">I have found medical professionals hard to deal with at times too. I am that 'geriatric' mum being 41. I visited our doctors to get in the system for antenatal care. I saw a G.P. whom i have not met before. He talked of the increased possibility of having a child with down symdrome, of Edwards disease etc.<br>
Negativity from the outset. I am now aware that there are so many diseases, disabilities etc and many not picked up until a child is born. Harry was healthy until he was 4. So i get agitated at this focus on tests and eradicating having a baby with downs. <br>
My initial appt with the midwife seemed to focus on the negatives too. My age, etc! Discussions around having a £400 private test to look at the babies genetics and find out if the baby has any problem genes likeky to cause disability. But then what do we do. How disabled would it actually be?!.<br>
Again we had a healthy Harry when he was born.<br>
So much focus on eradicating disability in a faetus. However, we do not know what life will bring. The twists and turns. We do not have the key to perfection. Something i feel has a lot of emphasis when carrying a faetus. <br>
That huge emphasis on breast is best. The lectures, the emphasis on how breast feeding can reduce hospital admissions, make our children healthy. I have to shatter the illusions of these professionals and say i am up for all possibilities and have bottles in and powdered milk ready and will see how i feel. I enlighten people that breast feeding did not stop callum being hospitalised with bronchulitus at 6 weeks and it certainly did not stop Harry getting cancer and dying.<br>
A happy mummy is best, one whom can nurture her baby and feel confident that baby is putting on wait and thriving. <br>
So i will go with the flow.<br>
Obviously one of the biggest things has been discussing Harry. Meeting professionals for the first time. Discussing previous pregnancies. It says in my notes that harry died. But each new professional does not read the notes. <br>
I have highlighted since day one that i have anxieties around the labour due to previous issues. Yes i had normal deliveries. However each one was not a dream; hypnotic; waterbirth experience. Both very medicalised. <br>
I have found it hard dealing with the medical professionals. Being a patient of a  Leeds doctors, but choosing Harrogate hospital already creates a cross between authorities. I had the boys at AGH, but felt i had too many memories and didn't want to go there. Harry was misdignosed there. I wanted new memories, so chose Harrogate. LGI would have again brought back too many memories too.<br>
I wrongly assumed Harrogate would request my notes from AGH and my G.P.. This has left me having to tell each different person i meet at Harrogate, about my previous births and about Harry. The health care assistant will come in first to do obs and pass time by asking if my first. No my 3rd. My mood depends if i can be bothered to elaborate, as the meeting is usually fleeting. <br>
So many emotions are brought up, because each time i am aware i am where i am i.e. pregnant because we lost harry. I do not think we would be having another as life would have been so very different and complete.<br>
My emotions get translated by professionals and not as pure grief. </p>
<p dir="ltr">Having this baby has enable<u>d</u> me to talk about Harry. Such as in the work place. This can be good. We have had a few new people join my department and they ask if this pregnancy is my first and i say no and briefly explain as ages of my other 2 get asked.<br>
I have meetings with people and they look at me and ask questions. When in a professional capacity I smile and  wash over the subject as quick as possible as not the time and place for elaborating.<br>
My dread is baby groups. The initial introduction; the how many children; why a big age gap etc. The reaction from others. The realisation that shit can happen, that children can get cancer and die.<br>
I have realised a new neighbour has a new baby and a 7 year old, so i met her up. I very quickly mentioned Harry. I mentioned him because it is because of him i know quite a lot of people in otley. It is because of him i know more about schools as we have been in that system for 5 years now. By mentioning Harry also meant i can talk about my 2 previous birth stories. Also if people befriend me on facebook, they will see me post memories of Harry and by me telling them what happened, hopefully this makes sense when they wonder what happened. </p>
<p dir="ltr">So here i am at 38 weeks pregnant.<br>
I finished work a few weeks ago because i had a lot of leave to use up.<br>
My desire is to have a c-section delivery. I don't physically need one, but due to issues in my 2 previous deliveries I do have heightened anxiety. I have anxiety around being 41. I  am also so much more aware of disabilities. Having been at martin house; having lived longer, awareness of what can go wrong is there.<br>
I am also a person whom won't take the medics judgememt as gospel. They do not have a crystal ball, they cannot predict that this baby will slide out and i'll be home hours later, which they keep saying could happen and i remind them that this might not be the case. <br>
Since i was told for several weeks by medical professionals that Harry had a virus in those early days when he actually had cancer, forgive me for not hanging onto every word that comes out of the so calles experts mouths. <br>
Yes i respect them, but they have to respect and empathise why i feel like i do too. Sadly in a 10 minute appt it is hard for them to understand and continuity has not been there, having dealt with various different people. </p>
<p dir="ltr">My consultant has eventually agreed to give me a c-section if normal delivery does not happen and i have a date for july 11th when i will be 40 weekd plus 3.</p>
<p dir="ltr">I had a small bleed yesterday and went to the maternity assessment unit. I had to  detail my previous labours. I was asked who lived at home and so again had to explain that Harry died, so does not live with us. Paul was with me and we both had a flash back when my temperature was being taken as we both remembered Harry having his temperature taken on so many numerous occassions. He would then take great joy in firing the plastic end off. He would also collect the plastic ends and make a poking stick out of them. We remembered him smiling and having a sense of humour. I welled up. People then think i am anxious about the here and now. It is hard to explain that by being in hospital or at appts brings back flash backs, memories etc. <br>
Memories that no professional has even the first clue about. </p>
<p dir="ltr">Here's hoping baby buckley makes an appearance asap as i am fed up now. Here is also praying she is fit and well. <br>
We are all looking forward to embarking on our new chapter of life. </p>
<p dir="ltr">I will also end by saying never say never!! I never thought i'd have been pregnant again that is for sure. Life changes and so do we!! </p>
Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0tag:blogger.com,1999:blog-8883310378101954785.post-65697168696155071552016-09-15T14:18:00.001-07:002016-09-15T14:48:03.821-07:00Glow Gold - September <p dir="ltr"><br>
http://www.bbc.co.uk/programmes/p045y70z#play<br></p>
<p dir="ltr">Above should be a link to the radio Leeds interview, which I did on Tuesday with Jo Shepherd, the director from Candlelighters. <br>
If you listen from 2.10 pm, we are on  intermittently until 2.50pm!<br>
It is the Andrew Edwards show on 13 th sept. I am having diffulty getting the link to attach. </p>
<p dir="ltr">The deputation speech which i did on Wednesday has been a success too and will hopefully be the start of awareness sharing across leeds. </p>
<p dir="ltr">My Scottish pals have been gathering huge momentum in Scotland and have managed to get the Scottish Parliament debating childcare cancer awareness today! </p>
<p dir="ltr">We need Westminster on board next!! </p>
Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0tag:blogger.com,1999:blog-8883310378101954785.post-81274038058520743492016-09-11T15:08:00.001-07:002016-09-11T15:15:14.252-07:00Harry's 9 th BirthdaySo I sit here on the eve of Harry's birthday. I have no presents to wrap, no party planned, no excited boy. <div>Harry would have turned 9 tomorrow. Alas he remains forever 6 1/2.</div><div>I sat in church today and those who had birthdays this week got a dip in the box, not my boy though. One of those hard few minutes to sit through. The world keeps on turning, but ours in some areas stands still. </div><div>I have felt very emotional these last couple of days. That tight feeling inside, that I frequently got for months after Harry died, but less so now. The feeling of anguish, sadness and wishing Harry was here. </div><div>Just as we get through the first few days of school and all the happy smiley faces of siblings returning for a new year, I have to get through another birthday without Harry here.</div><div>I was so very touched by a card we received on Friday from an old next door neighbour from my childhood, whom sent a cheque in honour of Harry's birthday for me to give to charity and £10 for Callum. It meant the world to me, because she remembered Harry, she mentioned his name. We also had another card from a fellow oncology mum, whose daughter died in 2012. </div><div><br></div><div>Harry was our first born, our longed for child. He smiled and smiled as soon as he was able. He lit up our lives. Through Harry I have met so many people in Otley, through baby groups, church and school. </div><div><br></div><div>Before having Harry I could count on one hand how many people I knew in Otley. Having children really has been the greatest gift. </div><div><br></div><div>Now Harry is in heaven I have met more people, spreading awareness of childhood cancer. I attended the Leeds centenary Rotary dinner in May as the charity chosen for the year was Candlelighters following a talk I gave to their club last year. I was invited to attend and sat on a table of people I did not know, apart from Jo Shepherd, the director of candlelighters. This did not bother me, because I was there to represent Harry, I could legitimately talk about him. I was sat next to the BBC radio Leeds presenter Andrew Edwards and am going to be live on his show on Tuesday afternoon between 2-3pm with Jo Shepherd from Candlelighters to talk about childhood cancer awareness month - September. I hope to raise awareness of the signs and symptoms, raise the profile of childhood cancer and get it on the map. The more we talk about childhood cancer, the less taboo the subject will be. I also want to break the taboo of bereavement. Our society is so rubbish, most don't grasp it, they pitter,patter around the subject, worrying about what to say. Tomorrow will always be the day I gave birth to Harry, in the very early hours, about 1 am, he came into this world, he was 2 weeks early and weighed 6 lbs 5 ounces! </div><div>Bereaved parents want to talk about their children, they light up when they hear their child's name. </div><div><br></div><div>So on Wednesday I will be making a deputation to a full council meeting in Leeds with my friend Rachel Marshall, whose son, Oliver died of cancer 10 years ago age 4 1/2. We met through Harry as Harry was in her younger son's class. The deputation is to request councillors to glow gold for childhood cancer awareness, to try and get the awareness cards describing the signs and symptoms placed in public places, to get childhood cancer on the map as awareness can save lives. I have met some councillors already from North West Leeds, but this opportunity will give us the chance to spread awareness and in turn the councillors can spread awareness to their constituents. </div><div><br></div><div>On Thursday Jonathan, an advanced Health improvement Specialist, will be taking 500 of our 'be childhood cancer aware' cards to an event aimed at G.P.s and the subject is cancer, he wants childhood cancer discussed too, so fingers crossed this produces results and will make professionals think more when seeing children with unexplained fatigue, temperatures, bruising, sickness etc! </div><div><br></div><div>In honour of Harry I spread awareness and hope others have better outcomes, giving them the birthdays he no longer has with us. </div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div>Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0tag:blogger.com,1999:blog-8883310378101954785.post-10225215018279050692016-07-28T16:42:00.001-07:002016-08-14T08:20:19.891-07:00Summer 2016<p dir="ltr">Currently we are in a tow truck being towed home having had a lovely 10 day break in Anglesey. Our car Engine caught fire, thus stopped us in our tracks to get home. Luckily we managed to put it out with water and juice we had before the fire service arrived.<br>
We were very lucky it didn't take hold and burn the whole car. Such is life and adds to the adventure! </p>
<p dir="ltr">We had a lovely holiday. Beautiful beaches, a really lovely part of the world. We took our bikes and managed a few bike rides, great cycle tracks and flat!<br>
Holidays are lovely, but away from the hustle and bustle of life it can give time to think that I don't want. We are so aware we are a 3, when buying tickets to get in places to unloading the bikes from the car.<br>
I have played back in my mind the months and weeks before Harry died. Now 2.5 years on, it still feels like yesterday, but I can understand and process what happened differently. Though i still feel aggrieved at the huge effort I had to go through to get a basic care package to support Harry and our family and the disjointed service provision. What I do know is that I still have ghosts that haunt me. <br>
The end of the summer school term felt tough. Callum was leaving year 1, the last year Harry ever entered at school. What happens next for callum is new territory and nothing can relate to what Harry did. It is a case of crossing over the road to the other side and see what is next, but it has felt a big leap emotionally. </p>
<p dir="ltr">September is childhood cancer awareness month. I have been trying  to promote awareness and have been getting local councillors on board with the help of a friend.<br>
I have given talks to a local council meeting and have spoken at a children's sub group, where I met someone else from public health and through his links with G.P. practices, 37 practices have taken the childhood cancer awareness cards I have from the charity 'be childhood cancer aware' and will be displaying them. <br>
The aim is to get the signs and symptoms out there and alongside those displayed for meningitis and septacemia. <br>
Gold is the colour associated with childhood cancer and the 'glow gold campaign' which I am involved with via a Facebook group of oncology parents from the whole of the UK, have been contacting buildings to light up gold from dawn until dusk on 1 st September. So far 160 buildings are joining in throughout the UK. </p>
<p dir="ltr">We are trying to get banks and shops involved too by having gold balloons; awareness cards and raffles etc. We want people to know childhood cancer exists, to be aware of the signs and symptoms as prevention is better than cure. We want parents to be aware, but professionals too, as I have become aware how common misdiagnosis is and how many children like Harry were told they had a virus; sent home and their cancer grew silently, to the point the cells had multiplied and gained momentum throughout their innocent bodies. <br>
Professionals need to listen to worried parents. Tests need to be done sooner as they are for many other diseases. </p>
<p dir="ltr">I hope together we can put childhood cancer on the map and that the colour gold becomes as synonomous as pink is with breast cancer. <br></p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-mUlAg-XcLlDhFVZPz76xehhb_-ne69ao4ueztnVGwV6c13sAwYLsQ53mNjwYAp3AthfCIStcZpL9V1u9ExlBA5CjUwQ3ZoAWV3fy8sbFRg107HhFtpc3E5neKSqWfd9pHiwWHHd4LV0/s1600/FB_IMG_1469694449474.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-mUlAg-XcLlDhFVZPz76xehhb_-ne69ao4ueztnVGwV6c13sAwYLsQ53mNjwYAp3AthfCIStcZpL9V1u9ExlBA5CjUwQ3ZoAWV3fy8sbFRg107HhFtpc3E5neKSqWfd9pHiwWHHd4LV0/s640/FB_IMG_1469694449474.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOKDsNXqoMYrqx-6ySKyF_3-mr0iAoQ03qLnpEWO0vbJEWZGwU25A5LskxNcFX9liC9__hS1rfFnCMbv5SD7CFrXaTz19dlsaPOA0BfGeJqmSIER-xyLXZ34rOME7Xr6xo2atdlZCmXPQ/s1600/FB_IMG_1469134163767.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOKDsNXqoMYrqx-6ySKyF_3-mr0iAoQ03qLnpEWO0vbJEWZGwU25A5LskxNcFX9liC9__hS1rfFnCMbv5SD7CFrXaTz19dlsaPOA0BfGeJqmSIER-xyLXZ34rOME7Xr6xo2atdlZCmXPQ/s640/FB_IMG_1469134163767.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOOnslhNXBV1vM8eklgD1CSbVoa77vfGVADEa0RHk243Imh9OQkn4flBZm3tHgHdseifgDtP4sE15jyWgMvR7uZ4YSLxT2Xs3XpLgJgVq3lCydtpSAT0VyK0BJfPAT1DiFqM6X4Gfw-0c/s1600/FB_IMG_1469134150084.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOOnslhNXBV1vM8eklgD1CSbVoa77vfGVADEa0RHk243Imh9OQkn4flBZm3tHgHdseifgDtP4sE15jyWgMvR7uZ4YSLxT2Xs3XpLgJgVq3lCydtpSAT0VyK0BJfPAT1DiFqM6X4Gfw-0c/s640/FB_IMG_1469134150084.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeqzcs5w5D8JCKsMC14WsivFhZPs7ntQIU3M67QcHfEW2OyNxkJjgX1A7l0jhc_MBXIcxat8fQDy1BZrPW5IhaUBs0XkSYZnFDV9i0EsF08EYAC_XdhUSA3VYzgnNLKwZfA3dToqXsuHU/s1600/IMG_2282.JPG%2525281%252529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeqzcs5w5D8JCKsMC14WsivFhZPs7ntQIU3M67QcHfEW2OyNxkJjgX1A7l0jhc_MBXIcxat8fQDy1BZrPW5IhaUBs0XkSYZnFDV9i0EsF08EYAC_XdhUSA3VYzgnNLKwZfA3dToqXsuHU/s640/IMG_2282.JPG%2525281%252529.JPG"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVAv_AaeHcc3KMSI6QswNneJYI4CeAgs83BlJ-e-YV1C2EMUnryZSXyZ9_VbFxUYEKf0b98VRnysHw3Pqxico8_JEDMEtzEAVSuWaf_pke6QFxd9peSO0usISO21u_I0H_UqhH6xuu4w0/s1600/FB_IMG_1469134143230.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVAv_AaeHcc3KMSI6QswNneJYI4CeAgs83BlJ-e-YV1C2EMUnryZSXyZ9_VbFxUYEKf0b98VRnysHw3Pqxico8_JEDMEtzEAVSuWaf_pke6QFxd9peSO0usISO21u_I0H_UqhH6xuu4w0/s640/FB_IMG_1469134143230.jpg"> </a> </div>Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0tag:blogger.com,1999:blog-8883310378101954785.post-54682635852069521542016-03-10T14:34:00.001-08:002016-03-13T16:04:07.840-07:00March 2016Spring is in the air, daffodils, crocuses, lambs. The symbol of new life and new beginnings!<div>Well I have a new job, based in the centre of Bradford. I started 3 weeks ago, so new beginnings certainly! I also turned 40 last month, so a new decade too! I celebrated entering a new decade with my buddy Heidi, we shared a party and had an awesome night with friends with the addition of pizza, prosecco and dancing! </div><div>I was concerned about starting a new job (a 12 month secondment) as my new team didn't know about Harry. This bothered me a lot prior to starting, I guess partly as the how many children question crops up, partly when detailing the last few years of my career, there is a gap and to gloss over this feels to eradicate 2.5 years where there were huge feelings of happiness, triumph, feelings of a huge sense of achievement, but also feelings of loss, grief, pain and sadness. Life was an immense rollercoaster and we would flip from a fab day out at the park or a trip to the zoo, to the next day being one where Harry was lethargic and lifeless. I am also aware that I know so much about oncology, about pain management, about control over diseases, areas that do crop up in my job and the reason I actually have I feel quite expert experience is, because of Harry. </div><div>What I have gained from those years is that I do not actually believe anything will ever be as bad as the pain of watching Harry slowly die and the feelings of acute and utter grief and devastation that followed. I think this gives me a feeling of strength.</div><div>We are approaching the second anniversary of Harry's death (April 8th) and yes the flash backs emerge. The feelings of this time 2 years ago. I remember a little triumph, whereby harry awoke in a better mood than he had been the previous days, callum was off nursery and the sun was shining. Harry had not been eating and so when he said he wanted some donuts from the canal boat in Saltaire, well that was the mission. Paul was working, but I had a continuing health care nurse visiting for 3 hours, so fab I thought, we can all go on a trip for the morning. I thought the nurse could help me manage harry and callum, as at that point their needs were polar opposites and to be able to push harry in his wheelchair at the slow pace needed as every bump hurt his aching body, but at the same time monitor a giddy, lively Callum, was too much for me to achieve alone. I explained the plan to the nurse and she was up for it, but then realised going to Saltaire meant crossing a border into another council area!!!!! She wasn't apparently insured to work over the border! She checked it out with her manager and the official answer was that she could not join us. However, luckily for us, unofficially she came, following us in her own car and broke the rules. It was worth it, as Harry ate a donut, smiled and Callum had a lovely morning too, running and climbing. Below are some pictures of that day.</div><div><br></div><div> Life was a constant parallel of planning for life at the same time we planned for death. By planning for death I mean, focusing on keeping Harry comfortable with his pain management, versus also keeping him alert; ensuring we were linked to the hospice doctors for advice, for we had chosen to keep Harry at home, where he felt the most at peace. From this time 2 years ago until his death, were the most hideous, it turned out Harry's temperatures were the result of a line infection. I fought against Harry going into hospital during the night to have IV antibiotics to 'cure' the infection. Instead, we awaited clarity from our Mcmillan nurse the next day, whom supported us with keeping Harry at home and 'locking' his line that was infected with antibiotics. The line had been used to give intravenous medications to harry and also used to take blood from harry via his portocath. <span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> Harry was due for a red blood cell transfusion the day we learnt about the infection. Due to the line being blocked, any transfusion would have needed a cannula fitting for access and a day in hospital. Since, we could not keep his blood and platelet cells stable with transfusions we made the decision with consultation with the medics to stop future transfusions. Another very hard decision that had to be made, one which symbolised we were no longer planning on keeping Harry alive, in fact, by stopping transfusions we were aiding Harry's death. His body was becoming a fragile shell and he was tiring with life. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div>So yes, there have been tears and sadness as I remember those last weeks. </div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Life tumbles on and Callum has started Beavers, he loved the first session, joining his friend Michael, whom he has known since being a baby, however he became tearful once he arrived at the second session. I stayed with him, gave him reassurance and on the way home Callum told me he was upset as Beavers reminded him of Harry. He remembered Harry taking Beaver home for the week. Suddenly, going to Beavers made Callum happy and sad, he found it difficult to process his feelings. However, over the next couple of sessions with support from myself he grew in confidence and I was able to leave him there! Another step forward. I am aware though that very soon Callum will be older than Harry will ever be. This feels strange and poignant. Although in Callum's eyes his brother is always 2 years older than him, currently age 8. </span></div><div>So back to my new job, I have mentioned Harry, I have mentioned being off with him for 2.5 years and I can breath!!! My new team seem lovely and I will learn lots over the next 12 months. </div><div>I can truly say that I have come giant leaps since I went back to work in July 2014. </div><div>We have some holidays planned this year, including another holiday to Turkey - all inclusive again, but to a different area this time. Sun, relaxation and family time.</div><div>Paul and I have also booked for just the 2 of us to go to Gdansk in Poland for 2 nights too. Our first trip abroad together, without children since I was pregnant with Harry 9 years ago! Can't wait!</div><div><br></div><div>Today has been a gloriously, sunny, spring day and the 3 of us have been undertaking jobs in the garden. We moved into our house 5 years ago in May, but then Harry became poorly, 6 months after we moved and jobs in the garden got put on hold. I have to say, for the last 2 Summers there has not been the energy for such jobs as stainning the garden furniture, but today was that day! Callum and I got our paint brushes working, whilst Paul has been creating Alcatraz to try and ensure the chickens cannot get out of their pen. They seem to be a Houdini double act!!!</div><div>More sun please, it does truly put a spring in our step, at a time when our hearts are heavy and our MISS of Harry greater. </div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiq3i66fRfqOZXpI0cWaBvrqc21apfuq7xVMfjNkSugTvALBdQnz61rPBCxTSxZD-NiS8IbiaIe52jafBIrqlTTZ6wnNhX9PppNiIga5tdyFDj3S8PsUqN2-edFRpj5giQUOTTer-ndOP8/s640/blogger-image--458453345.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiq3i66fRfqOZXpI0cWaBvrqc21apfuq7xVMfjNkSugTvALBdQnz61rPBCxTSxZD-NiS8IbiaIe52jafBIrqlTTZ6wnNhX9PppNiIga5tdyFDj3S8PsUqN2-edFRpj5giQUOTTer-ndOP8/s640/blogger-image--458453345.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKhVDtpM99yGYqr-87wdBmxzXJLK_uYtjLes1OC1g6WwEJNALwh7xtSHYFo8V6xuOFEwRUULZIaGiI7RKvE_9AGpBoYWTSM7UBis-KQUw2iOIagmJeLDX0J-dMb1eAwd46D_cQlyJw5Y0/s640/blogger-image--798621213.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKhVDtpM99yGYqr-87wdBmxzXJLK_uYtjLes1OC1g6WwEJNALwh7xtSHYFo8V6xuOFEwRUULZIaGiI7RKvE_9AGpBoYWTSM7UBis-KQUw2iOIagmJeLDX0J-dMb1eAwd46D_cQlyJw5Y0/s640/blogger-image--798621213.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitHCyrT-PvKFlFiDcbqnGpelURbBJcfwALnx6kzTvU8JgZhAvX5LBuUHYbQ6zSLXVXpyWg4oYUGfToXOox1u0sVCAzlnQ-LsakpCOUy-hc2bJbj7AouMKgSi1v-ljgaOWx19gwJhOQLCk/s640/blogger-image--1282654411.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitHCyrT-PvKFlFiDcbqnGpelURbBJcfwALnx6kzTvU8JgZhAvX5LBuUHYbQ6zSLXVXpyWg4oYUGfToXOox1u0sVCAzlnQ-LsakpCOUy-hc2bJbj7AouMKgSi1v-ljgaOWx19gwJhOQLCk/s640/blogger-image--1282654411.jpg"></a></div>Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0tag:blogger.com,1999:blog-8883310378101954785.post-35828270265763397642016-01-03T16:26:00.001-08:002016-01-09T14:19:07.884-08:00Hello 2016!So Christmas is all packed up, over for another year. Our belts are tighter, time for all those new year resolutions, more exercise, less booze etc, etc! <div>I hate saying 'happy new year' it seems trite. </div><div>For the majority of us a year will be filled with ups and downs of different degrees, none of us know what is around the corner. I remember entering 2014, knowing Harry was unlikely to make it to the next year, that year in particular seemed so very strange hearing people wish us a 'happy new year'. We had no idea on 1.1.14 that only 19 days later Harry would be paralysed from the waist down, by the viciousness that cancer is. Then we lived through some of the very worst weeks of our lives, weeks that still haunt me, weeks, where I felt so totally out of control, helpless, so vulnerable, but weeks where I had to summon the greatest strength ever to get the support needed for Harry from health and social care and strength to go on caring for Harry and I did my best for Callum too. </div><div>Who knows what 2016 has in store, we shall see. I will turn 40, that I do know! A decade ago we were a childless couple, going on many a city break, hoping to conceive, but enjoying life, whilst no children were on the scene. I don't feel 40 is old, I just feel me. Life still has a lot of twists and turns and opportunities to be grasped. I am certainly open to doors being opened and very much a believer in being in the right place at the right time. I have no grand plan. I guess I am acutely aware that the best laid plans have to be changed. I never envisaged having my first born die and so already my grand plans have been altered and now I feel the need to go with the moment, see what is on the horizon and what I should invest my energies in.</div><div>I feel a sense of relief that Christmas is over. I don't hate Christmas, but I did feel so very emotionally exhausted by it. Christmas so acutely reminds us of those missing from our families and increases our MISS of our loved ones hugely. I know I have come along way since last Christmas, where we escaped to Whitby for 5 nights. This Christmas Paul had to work Christmas Eve night shift, so we had no choice but to be at home, however we did escape for 3 nights just before Christmas to Hutton le Hole in North Yorkshire in our caravan. This was straight after school broke up and gave me the space to get away from some of the festiveness to brave the full on throttle of the week ahead. </div><div>I couldn't face the Christingle Service, I remember taking Harry and him wriggling when he was only months old, or running after him in subsequent years. I knew going would have reduced me to tears, the memories, the sadness, when it should be a happy service. I couldn't go and ruin it for everyone else. Instead I met Janey up with Callum and we exchanged Christmas presents. Callum and I then went bowling with Monica (Harry's classmate) and her mum Laura. We went to Shipley, the first and last time we had bowled there was with Harry in 2014, he was in his wheelchair, but in good spirits, it was a fun afternoon and felt like an achievement. Returning on Christmas Eve, was actually ok and we had a really lovely, fun time. We then had tea with friends, which then meant Callum was suitable tired and after leaving Santa and Rudolph their treats, he fell asleep surprisingly quickly! </div><div>There is so much pressure on the build up to Christmas, people say it's just one day, but it isn't anymore, there is the school production; the buying of presents; the decorations; the buying of food (though I didn't have to do much of that this year!); the work party; etc, etc! It is lovely, but at the same time exhausting. I would see things that Harry would have liked, fleetingly you contemplate buying them, then reality hits. In all honesty, the weeks before Christmas become a blur, they become weeks to survive, a mountain to climb. The climb did feel a little easier this time, though there were days when the fog would set in, the ground would feel muddy and the effort to get through would be greater, taking its toll. </div><div>I know family want to make plans for Christmas, overall this felt hard to commit to, particularly before Christmas, as said the mountain still needed to be climbed. Once Christmas had passed, it seemed easier to get through, the pressure gone, then the floods came to disrupt plans! </div><div>We went to a friend's house party on the Sunday after Christmas. Many of Callum's friends were there whom he's known since he was a baby. However, Callum didn't want to watch 'Descipable Me', which is one of his favourite films, instead he chose to write a letter to Harry, he did not let me read it, but sealed it in an envelope and asked me to look after it. Another gulping moment, parralel feelings of happy and sad, I love the fact that Callum remembers his brother, but at the same time, tears sting my eyes and for a moment I don't know whether to cry. Callum however joins his friends and starts to play and I take a leaf out of his book, live in the moment and join my friends. </div><div>So the letter joins a Christmas card, which Callum made at school for Harry. In it, Callum writes that he hopes Harry is having a merry time! I asked Callum what he wanted to do with the card, to which Callum said he wanted to attach the card to a balloon and send it to Harry. However, when given the chance to do this, Callum has chosen to keep the card.</div><div><br></div><div>I had a dream about Harry the other morning, I never dream about Harry. I can count on one hand how many times I have dreamt about him since he died. Having had trouble getting to sleep several nights in a row, I was in deep slumber at 8 am. I was having the best dream. It was windy and dark and I looked out of the spie whole in the front door and saw a dark figure in the distance, then a boy appeared, it was Harry, he ran to the door and I let him in. He was wearing shorts and a T-shirt and looked how he did in the summer before he died. He sat on my lap in the doorway and I cuddled him, something I couldn't do the weeks before he died, because he was in far too much pain. I cherished this cuddle. Harry was really happy, I asked him how he was and what heaven was like, to which he said it was good. I was so happy that he was happy! I knew he had to go back to heaven. Whilst he was with me I wanted to check his bottom, where he had, had several grade 5 pressure sores. Since he was running I assumed his bottom had healed, however he still had dressings on it, I was about to redress them as I told him I still had all the equipment and thought he could pop down and see me each time they needed changing! Then, Callum entered the room and I awoke! I really felt Harry was telling me that he was happy and ok. It did make me feel ok too! Later that day I told Callum that I had dreamt about Harry and how happy he was! I think this helped Callum too!</div><div><br></div><div>So, we made it through 2015. It was the year of the caravan! The caravan has enabled us to take off, without too much planning and periodically enjoy a few days together. To regroup as a a 3. To try and find our new 'normal'. With Paul working shifts, family time is special and a rarity. We also managed a trip abroad to Turkey and all inclusive was just the ticket, no planning, no decisions re restaurants etc. it was laid on a plate! Perfect! </div><div><br></div><div>We will always feel a whole in our hearts. Time helps you learn to live with the pain. I belong to a closed facebook group for bereaved parents whom have lost kids to cancer. This group has members who are new to loss and those whom children died 10 plus years ago. What is evident is that, that MISS never goes. For some it actually gets worse. We will be approaching Harry's second anniversary of his passing soon. With regards many around us and for example work, allowances are no longer made. It is chin up and get on with it. This can be hard, as in terms of dealing with loss we are still in the early days of coming to terms with our loss of Harry; regrouping as a 3; redefining our lives and working out where we are going. Grief is a journey in itself, on top of life itself. Whatever highs and lows there are, grief is always lurking in the background, like a sudden gush of cold air. Happiness does come, laughter does happen, but equally that cold air is sneaky and can cause sudden unexpected shivers, enough to take the edge off and for reality to hit, maybe for brief seconds, sometimes longer. Sometimes it feels like an out of body experience, when these shivers happen and I look down at myself having fun and suddenly feel like I don't belong, suddenly I want to be home, alone, lost in my grief. We are learning to pull ourselves through, take the fun times and roll with it. However, it's a journey and always will be. So hello 2016, what have you got in store...... </div><div><br></div><div><br></div><div><br></div>Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0tag:blogger.com,1999:blog-8883310378101954785.post-29419041346825029442015-12-07T01:36:00.001-08:002015-12-07T01:36:30.654-08:00Grief 6.12.15<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV9et-ejKefPuCYLeueGT8ja5AHQdE4Ak6VIWZlw1qOTUeL9azI7j92JtWLulcHwZ_GqBcmO9PuTkMhCz4wspVApPi2V1DkfaCbU2A19zgnxrqI1hkRpbeQu5S0QgcNZByXcZmbgmS0pA/s640/blogger-image--112516797.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV9et-ejKefPuCYLeueGT8ja5AHQdE4Ak6VIWZlw1qOTUeL9azI7j92JtWLulcHwZ_GqBcmO9PuTkMhCz4wspVApPi2V1DkfaCbU2A19zgnxrqI1hkRpbeQu5S0QgcNZByXcZmbgmS0pA/s640/blogger-image--112516797.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOZVXozxiGKqmPF9dAMBbO2YSIhgu2MiN4vOkkOz2uYPHVTWGKbP3nmWFj_bMkF1hvGEOtSchN6vPpxOXv08Pi430etqoMYgfce5R4eyDVeFG5NX5yOfdqNJABfmjStIwOGnNoIh_-LnY/s640/blogger-image--726362933.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOZVXozxiGKqmPF9dAMBbO2YSIhgu2MiN4vOkkOz2uYPHVTWGKbP3nmWFj_bMkF1hvGEOtSchN6vPpxOXv08Pi430etqoMYgfce5R4eyDVeFG5NX5yOfdqNJABfmjStIwOGnNoIh_-LnY/s640/blogger-image--726362933.jpg"></a></div><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV9et-ejKefPuCYLeueGT8ja5AHQdE4Ak6VIWZlw1qOTUeL9azI7j92JtWLulcHwZ_GqBcmO9PuTkMhCz4wspVApPi2V1DkfaCbU2A19zgnxrqI1hkRpbeQu5S0QgcNZByXcZmbgmS0pA/s640/blogger-image--112516797.jpg"></div><br><br>Grief can feel like a painful chronic disease. You have good days, weeks then terrible crippling days or weeks. There are the special days where you know that grief will consume you and the build up to these days can be worse than the actual day itself. Then there are days you think you will be ok, but suddenly, wham, grief is like a tidal wave and because you hadn't prepared yourself it seems worse. <br>Today was one of those days.<br>I went to church and completely forgot about it being a baptism. There was no Sunday school, but lots of children. Lots of children from babies to toddlers. Lots of children that gave me flashbacks of memories of being in church with Harry, when he was the ages of the children I saw. I remember running after him, watching him run. I remember him being months old and wriggling and not being that placid child! Full of spirit.<br>I was consumed by grief and had to take some time out in the toilet. I was going to get Callum and go, but he was playing in the back room with a friend. He was playing with Lego, not any Lego, but police lego, Harry's favourite! The toy he got 4 years ago at Christmas following his diagnosis of cancer. More flashbacks. Then a lady came in with her 3 year old and we were talking about toys and children and I was saying how Callum had playmobil age 2, which sounds young, but I wanted to scream it was because his older brother loved it too, but who wants to know about my child not on this earth anymore. Maybe they do, but to go into it creates more pain. Then the child Callum was playing with started saying that Santa does not exist and I tried to distract the conversation by saying we went to see the real Santa in Lapland. Then the mother sat their, started asking questions about it and I nearly said we went with the charity 'make a wish upon a star' because Harry was terminally ill, but I didn 't. I said how magical it was, which it really was! <br><br>What I am trying to get across is that normal life brings up crippling, gulping moments nearly everyday. Most of the time I think inside and manage to the sustain the mask during these moments. However, today I had to retreat to the toilet and shed a few tears. Grief hurt so much, I couldn't keep the mask on. However, nobody knew, we don 't hold up a big sign saying I have had a moment of heart wrenching grief. We just get on with life. <br><br>Today was also the Victorian Fair. I remember so clearly taking Harry and Callum 4 years ago. Out first family outing post Harry being discharged following 2 rounds of chemo. Harry was weak and in a wheelchair. I remember many other Victorian fairs too, I remember going when Callum was only weeks old and Harry was age 2.<br>Again so many memories. <br><br>We started decorating the house with Christmas decorations today and I came across some handmade ones that Harry did when he was in hospital this time 3 years ago. The pictures of that day came up on my facebook memories. Beautiful pictures, which I will share with you. But again flashbacks. <br><br>All I want for Christmas is to be a family of 4 again, to have Harry back. <br>December is so hard. I can just about still say, not that I say it out loud, but I do in my head, that Harry died last year, soon I will be saying he died in 2014 or 2 years ago. Suddenly Harry is the past. His peers are growing so big now. <br>However, to me and my family and very close friends, he will never be in the past. He will always be my son, Callum's brother and a grand son. <br><br>Grief is so hard, yet so unacknowledged. It is the elephant in the room. Nobody quite knows how to address it, so most don't. But I truly thank those that do.<br><br>I am also finding the death of a counsellor at candlelighters has hit me harder than I thought it would. He died suddenly age 52. I spilled my heart out to him in April and always knew I could go back and he'd know my story. My parents saw him regularly too, so he knew lots about us. I hadn't realised how much it meant to have a door I could open and spill out a bit more, even if I chose not to. The option was there and this provided a huge crutch. An unexpected crutch. Now it has gone I realise how much that door meant to me. Candlelighters has got another counsellor, but to start the story from scratch again in itself is exhausting! <br><br>Last week Callum brought a reading book home titled 'Fly High'. It was the last reading book Harry ever read. Such a poignant title. Again, it brought back memories. I shared these with Callum too. <br><br>Life remains a rollercoaster of feelings. I have had some really lovely times recently too. Such as going to Prague with the girls and going to my friend's 40 th party yesterday was also a happy day. I am a positive person and strive on in life. However, it is hard not to let the flashbacks take over and be consuming at times. <br><br>What I have learnt though is that life is for living. Grasp opportunities, really laugh at something, smile at the small things and treasure them. <br><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiYclo51fcVp9HjKJpNHfa5SRV_p7skbiMLsCCR03He69p3k2eupbeGm9Zh6TWZYyUNQAeaucoxSSZ0sTlG3O_z-eTqh8zmysx3P5leOcXM4S8f7q9c-E3UflmolT13x3PvPz2Q8-N_5E/s640/blogger-image--235801561.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiYclo51fcVp9HjKJpNHfa5SRV_p7skbiMLsCCR03He69p3k2eupbeGm9Zh6TWZYyUNQAeaucoxSSZ0sTlG3O_z-eTqh8zmysx3P5leOcXM4S8f7q9c-E3UflmolT13x3PvPz2Q8-N_5E/s640/blogger-image--235801561.jpg"></a></div><br></span>Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0tag:blogger.com,1999:blog-8883310378101954785.post-67637140347508968922015-11-08T07:46:00.001-08:002015-11-08T07:51:04.799-08:00November 2015This is always a hard time of year for us. This time 4 years ago I knew something was wrong with Harry. We had been told he had a virus, having been to AGH twice for overnight stays, I felt like I was being labelled as the neurotic mother. I was trying hard to sit tight and ride out this virus as I had been told that it could take some weeks even months to pass!<div><br></div><div>Though witnessing my Harry so lifeless and in pain was the hardest thing ever. I felt helpless. The calpol and intermittent ibuprofen was not hitting the spot. Virus or no virus I felt Harry had been left to suffer, no one really caring except myself as I was off work, managing him 24/7. </div><div><br></div><div>As the week progressed this time 4 years I started investigating how to get a private ultrasound as I needed more clarity on what was wrong with Harry and needed to know we had ruled everything out. </div><div><br></div><div>On 11.11.11 Harry was more lifeless than the previous days so I took him in my arms to see the G.P. and she was shocked to see Harry in the state he was. Finally we were taken seriously and went home to pack for a stay in LGI. On the 12.11.11 Harry had 2 ultrasounds at LGI and the massive tumour was identified in his abdomen. Cancer was discussed as the most probable diagnosis.</div><div><br></div><div>I have been asked how I felt when I heard those words. Well initially I was relieved at being taken seriously and I wasn't neurotic. However, I did not really know what it all meant and how it would affect our lives. The week that followed enlightened me as we were quickly transferred onto the oncology ward.</div><div><br></div><div>Harry had several tests that week that required anaesthetics, starvation, blood tests and a biopsy which left him with a 9 inch scar. He had his first blood transfusion, started chemo as he was slipping through our fingers and had his first nasal gastric tube fitted! </div><div><br></div><div>This was a taster as to how our lives would be for the next 2.5 years! As that first week unfolded I realised the enormity of what neuroblastoma cancer is and the effect it would have not only on Harry, but all of us.</div><div><br></div><div>The enormity did not hit me until Saturday 18 th November, when I ventured into Leeds to get a new mobile phone. I'd forgotten Christmas was on thd horizon and seeing the coca cola lorry with the fake snow, the shops with all their festivity and all the people frantically shopping for Christmas, I felt like I was stood still looking in on a world I did not belong to. My fear was that Harry would not make Christmas. I nearly fell in a crumpled heap in the entrance of marks and spencer, but managed to knock onthe window of a nearby police car and sat in the back for a few moments to gather myself back together! From that moment it was sink or swim and I chose swim. </div><div><br></div><div>Now we do not have Harry on this earth with us I still choose swim. Though do have some sinking days, particularly this time of year.</div><div><br></div><div>'Take a break' magazine are going to feature a story in their next edition of Harry's illness from Callum 's perspective. I have heard the story verbally and it is in 'take a break style' so a little twee in places, but overall I feel it highlights the plight of siblings and details Harry's treatment and relapse. In light of the story that is unfolding on Coronation street and the decision to play down the neuroblastoma story of Hope, since the cancer has not spread, which is not typical of those diagnosed with neuroblastoma, I hope our story is read by many and the true depiction of what can happen is understood further. </div><div><br></div><div>I also want to share a very useful arcticle another bereaved parent shared, as it depicts an accurate analysis of the life of a bereaved parent.</div><div><br></div><div>By Angela Millar </div><div><br></div><div><header class="entry-header" style="box-sizing: border-box; "><h1 class="entry-title" itemprop="headline" style="text-align: -webkit-auto; box-sizing: border-box; margin: 0px 0px 1.6rem; font-weight: 400; padding: 0px; "><span style="font-size: 17px; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">7 Things I’ve Learned Since the Loss of My Child</span></h1><p class="entry-meta" style="text-align: -webkit-auto; box-sizing: border-box; margin: 0px 0px 2.4rem; padding: 0px; "><time class="entry-time" itemprop="datePublished" datetime="2015-10-31T11:28:22+00:00" style="box-sizing: border-box; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">OCTOBER 31, 2015</time></p></header><div class="entry-content" itemprop="text" style="box-sizing: border-box; "><p style="text-align: -webkit-auto; box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><em style="box-sizing: border-box; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">by Angela Miller</em></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Child loss is a loss like no other. One often misunderstood by many. If you love a bereaved parent or know someone who does, remember that even his or her “good” days are harder than you could ever imagine. Compassion and love, not advice, are needed. If you’d like an inside look into why the loss of a child is a grief that lasts forever, here is what I’ve learned in my seven years of trekking through the unimaginable.</span></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><a href="http://abedformyheart.com/wp-content/uploads/2015/10/7-Things-Ive-Learned-Since-the-Loss-of-My-Child-e1446299005986.jpg" style="box-sizing: border-box; -webkit-transition: all 0.1s ease-in-out; text-decoration: none; font-size: 17px; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img class="aligncenter size-full wp-image-6889" src="http://abedformyheart.com/wp-content/uploads/2015/10/7-Things-Ive-Learned-Since-the-Loss-of-My-Child-e1446299005986.jpg" alt="7 Things I've Learned Since the Loss of My Child" width="700" height="525" scale="0" style="box-sizing: border-box; border: 0px; max-width: 100%; height: auto; display: block; margin: 0px auto 1.2rem; "></font></a></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><em style="box-sizing: border-box; "><strong style="box-sizing: border-box; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">1). Love never dies.</strong></em></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">There will never come a day, hour, minute or second I stop loving or thinking about my son. Just as parents of living children unconditionally love their children always and forever, so do bereaved parents. I want to say and hear his name just the same as non-bereaved parents do. I want to speak about my deceased children as normally and naturally as you speak of your living ones.</span></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I love my child just as much as you love yours– the only difference is mine lives in heaven and talking about about him is unfortunately quite taboo in our culture. I hope to change that. Our culture isn’t so great about hearing about children gone too soon, but that doesn’t stop me from saying my son’s name and sharing his love and light everywhere I go. Just because it might make you uncomfortable, doesn’t make him matter any less. My son’s life was cut irreversibly short, but his love lives on forever. And ever.</span></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><em style="box-sizing: border-box; "><strong style="box-sizing: border-box; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">2). Bereaved parents share an unspeakable bond.</strong></em></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">In my seven years navigating the world as a bereaved parent, I am continually struck by the power of the bond between bereaved parents. Strangers become kindreds in mere seconds– a look, a glance, a knowing of the heart connects us, even if we’ve never met before. No matter our circumstances, who we are, or how different we are, there is no greater bond than the connection between parents who understand the agony of enduring the death of a child. It’s a pain we suffer for a lifetime, and unfortunately only those who have walked the path of child loss understand the depth and breadth of both the pain and the love we carry.</span></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><em style="box-sizing: border-box; "><strong style="box-sizing: border-box; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">3). I will grieve for a lifetime.</strong></em></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Period. The end. There is no “moving on,” or <a href="http://abedformyheart.com/6-things-to-never-say-bereaved-parent/" style="box-sizing: border-box; -webkit-transition: all 0.1s ease-in-out; text-decoration: none; "><span style="box-sizing: border-box; ">“getting over it.”</span></a> There is no bow, no fix, no solution to my heartache. There is no end to the ways I will grieve and for how long I will grieve. There is no glue for my broken heart, no exilir for my pain, no going back in time. For as long as I breathe, I will grieve and ache and love my son with all my heart and soul. There will never come a time where I won’t think about who my son would be, what he would look like, and how he would be woven perfectly into the tapestry of my family. I wish people could understand that grief lasts forever because love lasts forever; that the loss of a child is not one finite event, it is a continuous loss that unfolds minute by minute over the course of a lifetime. Every missed birthday, holiday, milestone– should-be back-to-school school years and graduations; weddings that will never be; grandchildren that should have been but will never be born– an entire generation of people are irrevocably altered <em style="box-sizing: border-box; ">forever</em>.</span></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">This is why grief lasts forever. The ripple effect lasts forever. The bleeding never stops.</span></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><em style="box-sizing: border-box; "><strong style="box-sizing: border-box; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">4). It’s a club I can never leave, but is filled with the most shining souls I’ve ever known.</strong></em></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">This crappy club called child loss is a club I never wanted to join, and one I can never leave, yet is filled with some of the best people I’ve ever known. And yet we all wish we could jump ship– that we could have met another way– <em style="box-sizing: border-box; ">any </em>other way but <em style="box-sizing: border-box; ">this.</em>Alas, these shining souls are the most beautiful, compassionate, grounded, loving, movers, shakers and healers I have ever had the honor of knowing. They are life-changers, game-changers, relentless survivors and thrivers. Warrior moms and dads who redefine the word brave.</span></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Every day loss parents move mountains in honor of their children gone too soon. They start movements, change laws, spearhead crusades of tireless activism. Why? In the hope that even just one parent could be spared from joining <em style="box-sizing: border-box; ">the club. </em>If you’ve ever wondered who some of the greatest world changers are, hang out with a few bereaved parents and watch how they live, see what they do in a day, a week, a lifetime. Watch how they alchemize their grief into a force to be reckoned with, watch how they turn tragedy into transformation, loss into legacy.</span></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Love is the most powerful force on earth, and the love between a bereaved parent and his/her child is a lifeforce to behold. Get to know a bereaved parent. You’ll be thankful you did.</span></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><em style="box-sizing: border-box; "><strong style="box-sizing: border-box; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">5). The empty chair/room/space never becomes less empty.</strong></em></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Empty chair, empty room, empty space in every family picture. Empty, vacant, forever gone for this lifetime. Empty spaces that should be full, everywhere we go. There is and will always be a missing space in our lives, our families, a forever-hole-in-our-hearts. Time does not make the space less empty. Neither do platitudes, clich<span class="st" data-hveid="50" style="box-sizing: border-box; ">é</span>s or well-wishes for us to “move on,” or “stop dwelling,” from well intentioned friends or family. Nothing does. No matter how you look at it, empty is still empty. Missing is still missing. Gone is still gone. The problem is nothing can fill it. Minute after minute, hour after hour, day after day, month after month, year after heartbreaking year the empty space remains.</span></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The empty space of our missing child(ren) lasts a lifetime. And so we rightfully miss them forever. Help us by holding the space of that truth for us.</span></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><em style="box-sizing: border-box; "><strong style="box-sizing: border-box; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">6). No matter how long it’s been, holidays never become easier without my son.</strong></em></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Never, ever. Have you ever wondered why <em style="box-sizing: border-box; ">every </em>holiday season is like torture for a bereaved parent? Even if it’s been 5, 10, or 25 years later? It’s because they really, truly are. Imagine if you had to live every holiday without one or more of your precious children. Imagine how that might feel for you. It would be easier to lose an arm, a leg or two– <em style="box-sizing: border-box; ">anything</em>— than to live without your flesh and blood, without the beat of your heart. Almost anything would be easier than living without one of more of your precious children. That is why holidays are <em style="box-sizing: border-box; ">always and forever </em>hard for bereaved parents. Don’t wonder why or even try to understand. Know you don’t have to understand in order to be a supportive presence. Consider supporting and loving some bereaved parents this holiday season. It will be the best gift you could ever give them.</span></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><em style="box-sizing: border-box; "><strong style="box-sizing: border-box; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">7). Because I know deep sorrow, I also know unspeakable joy.</strong></em></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Though I will grieve the death of my son forever and then some, it does not mean my life is lacking happiness and joy. Quite the contrary, in fact, though it took awhile to get there. It is not either/or, it’s both/and. My life is more rich now. I live from a deeper place. I love deeper still. Because I grieve I also know a joy like no other. The joy I experience now is far deeper and more intense than the joy I experienced before my loss. Such is the alchemy of grief.</span></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Because I’ve clawed my way from the depth of unimaginable pain, suffering and sorrow, again and again– when the joy comes, however and whenever it does– it is a joy that reverberates through every pore of my skin and every bone in my body. I feel all of it, deeply: the love, the grief, the joy, the pain. I embrace and thank every morsel of it. My life now is more rich and vibrant and full, not despite my loss, but <em style="box-sizing: border-box; ">because</em> of it. In grief there are gifts, sometimes many. These gifts don’t in any way make it all “worth” it, but I am grateful beyond words for each and every gift that comes my way. I bow my head to each one and say <em style="box-sizing: border-box; ">thank you, thank you, thank you. </em>Because there is nothing– and I mean absolutely <em style="box-sizing: border-box; ">nothing– </em>I take for granted. Living life in this way gives me greater joy than I’ve ever known possible.</span></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I have my son to thank for that. Being his mom is the best gift I’ve ever been given.</span></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Even death can’t take that away.</span></p><p style="text-align: -webkit-auto; box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">—————————————————————————————————————————</span></p><p style="box-sizing: border-box; margin: 0px 0px 2.6rem; padding: 0px; text-align: left; "><a href="http://abedformyheart.com/wp-content/uploads/2014/04/IMG_0411-5.jpg" style="box-sizing: border-box; text-decoration: none; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img class=" size-medium wp-image-277 alignleft" src="http://abedformyheart.com/wp-content/uploads/2014/04/IMG_0411-5-300x234.jpg" alt="author" width="300" height="234" scale="0" style="text-align: -webkit-auto;box-sizing: border-box; border: 0px; max-width: 100%; height: auto; float: left; margin: 0px 2.4rem 1.2rem 0px; "></font></a><em style="box-sizing: border-box; "></em></p><div style="text-align: -webkit-auto; "><em style="box-sizing: border-box; "><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><em style="box-sizing: border-box; "><b style="box-sizing: border-box; ">Angela Miller </b></em>is a writer, speaker and grief advocate who provides support and solace to those who are grieving the loss of a child. She is the author of <span style="box-sizing: border-box; "><a href="http://www.abedformyheart.com/buy/" target="_blank" style="box-sizing: border-box; -webkit-transition: all 0.1s ease-in-out; text-decoration: none; "><i style="box-sizing: border-box; ">You Are the Mother of All Mothers: A Message of Hope for the Grieving Heart</i></a></span>, founder of the award-winning community <span style="box-sizing: border-box; "><a href="http://www.abedformyheart.com/" style="box-sizing: border-box; -webkit-transition: all 0.1s ease-in-out; text-decoration: none; ">A Bed For My Heart</a></span>, writer for the Open to Hope Foundation and <i style="box-sizing: border-box; ">Still Standing Magazine</i>. Angela writes candidly about child loss and grief without sugar coating the reality of life after loss. Her writing and her book have been featured in <span style="box-sizing: border-box; "><i style="box-sizing: border-box; "><a href="http://www.forbes.com/sites/yec/2014/05/27/three-crowdfunding-trends-entrepreneurs-shouldnt-ignore/" target="_blank" style="box-sizing: border-box; -webkit-transition: all 0.1s ease-in-out; text-decoration: none; ">Forbes</a></i></span>, <i style="box-sizing: border-box; ">Psychology Today</i>,<i style="box-sizing: border-box; ">MPR</i>, <i style="box-sizing: border-box; ">BlogTalk Radio</i>, <i style="box-sizing: border-box; ">Open to Hope Radio</i> and <i style="box-sizing: border-box; ">Writerly</i>, among others. When she’s not writing, traveling, or healing hearts, you can find Angela making every moment count with her two beautiful, blue-eyed boys</span><font color="#222222" face="Gilda Display, serif"><span style="font-size: 14px; line-height: 22px; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-text-size-adjust: 100%; background-color: rgb(255, 255, 255);">.</span></font></em></div><p></p></div></div><div><br></div><div><br></div><div><br></div>Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0tag:blogger.com,1999:blog-8883310378101954785.post-87710362385654928652015-09-24T05:08:00.001-07:002015-09-24T05:08:49.232-07:00Look north article<a href="http://www.bbc.co.uk/programmes/p0338sxp">http://www.bbc.co.uk/programmes/p0338sxp</a><div><br></div><div>Above is a link to the article shown on Look North this week, which Harry and myself featured on to raise awareness of childhood cancer. </div>Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0tag:blogger.com,1999:blog-8883310378101954785.post-67691684303067834652015-09-22T04:25:00.001-07:002015-09-22T04:34:39.441-07:00Harry's 8 th birthdayWow I can't believe how 8 years ago how I felt so ecstaticly happy to have my longed for baby in my arms. How beautiful the world was and now, well we will always have a piece of our heart missing. Life never quite so beautiful. <div>I wonder what Harry would look like now, I wonder what he would have wanted for his birthday, I wonder what kind of cake he would have wanted, I wander what kind of party he would have had, I wonder............</div><div>That is all we can do, wonder. </div><div><br></div><div>Harry's much loved and cherished hamster - Joey, died the night before his birthday. How timely and poignant. When I broke the news to Callum he was very sad, we all felt sad, because Joey was such a link to Harry, but age just over 2 Joey had been struggling with life, his mobility was very poor, he lost interest in his food, just like Harry did.</div><div>Trying to put a positive spin on things I told Callum that Harry had the best birthday present ever, that Joey was now with him in heaven.</div><div><br></div><div>To celebrate Harry's birthday we bought 3 balloons, to take up to his tree on the Chevin and we had finally got a plaque to attach to his bench. The day started with heavy rain, but fortunately brightened up into a beautiful day and the view from The Chevin was awesome as always! We had lunch first in the cafe and being the heritage weekend there were activities going on up at The White House, which enhanced the day. We attached one ballon to the bench and let the other 2 go. A very moving and touching time, to see the balloons float away. </div><div>We returned home for cake, chosen by Callum and he blew out the candle with the number 8 on. Both sets of grandparents joined us.</div><div>We buried Joey in the garden. Callum wanted to cremate him, but burning a wee hamster, well decided it was just not appropriate! Harry was cremated so I understood where he was coming from. So Joey has a little cross, to mark his burial ground. Like Harry, Joey will never be forgotten and has his legacy too in the form of the book 'Runaway Joey!'</div><div><br></div><div>So here we are 18 months of living without Harry. Callum talks lots about Harry, gets upset from time to time, but, Harry remains a part of our family and always will.</div><div>Our holiday to North Wales was great and being on a smallish caravan site meant Callum could go off and play with the other 5 year olds on the site, which was lovely to see. Though Callum did exclaim during that holiday that he wanted Father Christmas to bring him another brother, called Harry! So the conversation then leads to the parameters of Father Christmas's powers to grant wishes!</div><div>A piece of our hearts will always be missing, till the day we die. We try and get on with life and by and large we do, but behind that smile is always a feeling of incompleteness. </div><div>I think keeping busy is what many grieving parents do, as the moment any of us stand still the overwhelming feelings of grief come, the flashbacks, the memories and ultimately the sadness.</div><div><br></div><div>I have just had 2 people from Look North here, to do an interview, to be shown tonight in conjunction with Candlelighters, to feature our journey and also focus on the statistics of childhood cancer. I know what I said will be edited into seconds and they will show footage of Harry too. But I hope it can raise awareness that childhood cancer exists, that it comes and invades your whole family, not just the child fighting to survive. The reason I do these things is because cancer affects the rest of our lives. The flashbacks will always be there, the grief, the pain of living without Harry. They don't go away, regardless of how hard we try. So I figure I might as well use our experience to educate and help others. Most of all it keeps Harry's memory alive. Harry though not on this earth anymore, through me, can still make a difference! </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3TOfh6T3KTaOWq_uP_hg_O33KOkYNasVNPnBIuDnvIIMkcW4oqU-_pKfFWOSNnYDkaVEzdf3sSGnQN6BshAbqjT4Xs3-wiAgaau5_Wrr8mJyXw-eBms82GahQiyemyZGjsdw32mJQsVg/s640/blogger-image-279938520.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3TOfh6T3KTaOWq_uP_hg_O33KOkYNasVNPnBIuDnvIIMkcW4oqU-_pKfFWOSNnYDkaVEzdf3sSGnQN6BshAbqjT4Xs3-wiAgaau5_Wrr8mJyXw-eBms82GahQiyemyZGjsdw32mJQsVg/s640/blogger-image-279938520.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZnA15V-OfyTr-dV9IiftyBQnoFoaxibmYl9ZSEEon-WaHgB5zVG7M_Cm4aSG4nEy5iZkII6mHeJe9UrP-nkpCnDIjIRnkDneQzT3bi5zN12MdglePu95LgNk41dlOrIXDrjySieg9KR8/s640/blogger-image--135096071.jpg" imageanchor="1" style="margin-left: 1em; 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margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjd_QFMmBOVZnff8KbXvtU1ZyubMC210cuqjmVpDp_0kVqnsudhVkJNw7MI3MMAOXOgWXDfR-QzGxaSdFHja2S-yciG5jDs5vIsR4bADsXitE-jdU-V_sh3R3Q-FfEx7ZL-FPocM5M_v8M/s640/blogger-image--1368455148.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-OPU90g-sYZfnNyrkyxmojcKhIelX9FufoZl6l40w3hhVuhLWcDGF9ypgtjC9WtmWAr9zaU6FnHFZrMg6dw7KOnBcapoUkBcI7e7_HBx8yHzCVNJ69VLebzhQt-ilH0Xyp1Um5wjFn6k/s640/blogger-image--2043734308.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-OPU90g-sYZfnNyrkyxmojcKhIelX9FufoZl6l40w3hhVuhLWcDGF9ypgtjC9WtmWAr9zaU6FnHFZrMg6dw7KOnBcapoUkBcI7e7_HBx8yHzCVNJ69VLebzhQt-ilH0Xyp1Um5wjFn6k/s640/blogger-image--2043734308.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBiA3ysHstJHC3PEaCV0NzjYxtinZE51S3poP-QEuiX7FCU6NvWMahbH3AMaeJaDxJ_tZ7kDvK-i8f0eXg9reBUtal-WCRmLsM1AwK06BLJGX0k4d0U1Uec7KFZupUUbNYk9N8-dSLCvw/s640/blogger-image-1083001537.jpg" imageanchor="1" style="margin-left: 1em; 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I've been completing a university module for work, to qualify me as a best interest assessor under the mental capacity act, just handed it in last week! Fingers crossed! <div><br></div><div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I have also been busy getting a power point presentation ready. I am lucky to have a friend Lynne Rhodes-Holme whom met me for the first time in April 2012, giving a presentation to Otley Rotary club only hours after Harry's 9 hour op to remove his tumour, help set up 'Harry's legacy' which has been launched in conjunction with the Rotary club to raise money for Candlelighters. I gave my first presentation under this umbrella a few weeks ago to Leeds Rotary club, which is in its centenieth year and they have chosen to support candlelighters for their charity of the year. They gave £5000 to Harry's legacy which we are truly grateful for, in exchange for the presentation I gave with Lynne Rhodes- Holmes! Hopefully there will be lots more opportunities to raise money over this next year!</span></div></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div>We have also had a fab summer with Callum during the 6.5 week hols! Will write more over next week, but thought I'd share my picture of Callum's first day back at school today. Callum has just started year 1, the year that harry is in the picture and the last year he entered. Feels strange to think that at the end of this school year, Callum will be older then Harry ever was on this earth. Though Harry will always be Callum's older brother. He talks lots about Harry. He cries about his loss of harry too. 2 miles up a hill in Kettlewell he sobbed his heart out for Harry and said if harry was still alive and poorly, then he would give the money he's been saving up, to help make Harry better. We all had tears running down our cheeks and shared a group hug! Just because Callum is young, it doesn't mean he is too young to grieve and have that big MISS that we all feel. <div>It is Harry's 8 th birthday on Saturday too, so an emotional week. I remember 8 years ago, feeling so excited about the prospect of meeting our baby, harry was born 2 weeks early, so my wait wasn't long! </div><div>I also remember this time 4 years ago. Harry had, had night sweats and had been waking up the night, then seemed ok for his birthday. Then he seemed to be getting withdrawn, then he had intermittent pains in his legs, abdomen and constant temperatures. I remember going out of my mind with anxiety as Harry turned from our gregarious boy into a lifeless being laid out on our sofa.</div><div>September is childhood cancer awareness month. Gold is the colour for childhood cancer.<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_5CSIZ8HPdZjS9hj5F3WEejPnXKWBlC_b83lQdLnQQYeiRyL92i8y5IQbwxYDhYmyYTbrfcs-Gq5L3Z9kpj6PCiak-UqLp9_RR_pdq-VI57Mvp_Mtua-M6U9tuZMN1vCxy8kFE5AskPs/s640/blogger-image-223353195.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_5CSIZ8HPdZjS9hj5F3WEejPnXKWBlC_b83lQdLnQQYeiRyL92i8y5IQbwxYDhYmyYTbrfcs-Gq5L3Z9kpj6PCiak-UqLp9_RR_pdq-VI57Mvp_Mtua-M6U9tuZMN1vCxy8kFE5AskPs/s640/blogger-image-223353195.jpg"></a></div><div><br></div><div><br></div>A poem, written by a cancer mum. The words are so true. Cancer is so horrible, most don't want to imagine, but sadly it was our reality and the reality of too many.</div><div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF4seC7x-p2MllwE-5ukWXrysNVl0btFzTteoW8RcboBlI4_ayMjTbFX2kfx1fNDkp9hNPLFXS4PRmDMUbcJAMXZAzXPHZZWYzL0P97eMBGdijdVXd-suEpiFOSowASCBj0SC39FU207A/s640/blogger-image--326979249.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF4seC7x-p2MllwE-5ukWXrysNVl0btFzTteoW8RcboBlI4_ayMjTbFX2kfx1fNDkp9hNPLFXS4PRmDMUbcJAMXZAzXPHZZWYzL0P97eMBGdijdVXd-suEpiFOSowASCBj0SC39FU207A/s640/blogger-image--326979249.jpg"></a></div></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj939y9mpBuZux4V8JsUtlinNq95LfBGkpAFKzvmGhoq0rKtqtYhg15n-NBt_eS4n8PaDSMK2qEmRReShVXJ50G1wpd0CawoV4eVkWQL2EyQ3_AFW-Chh4Z8Sz5ic4_DU1TZsAiE13p8EU/s640/blogger-image-739856298.jpg" imageanchor="1" style="margin-left: 1em; 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The month summer officially starts. I remember this month 3 years ago in 2012, the month Harry was in full swing of high dose chemotherapy and the full effects were taking shape in the form of infections due to rock bottom immunity, followed by VOD, whereby Harry was very closely monitored, his fluid intake reduced to only a few ml as his kidneys could not take more. Intensive care was a high possibility, but fortunately never became a reality. The same month saw Harry improve to the point he could be discharged home. Final touches were also being made to our plans for Harry's Summer Ball, which took place in July 2012.<div>At that point we greatly valued the fact that candlelighters funded holidays. Something we would never have booked in advance if at all, as even when Harry was discharged he was still having regular platelet and red blood transfusions. The risk of infections remained high and thus so was a re admission to hospital. With myself on reduced pay due to having exceeded my 6 months full sick pay, a reduced income meant, little left for holidays.</div><div>We also had no idea how long Harry was going to be in hospital during high dose chemo, so with timescales unknown, holidays as said was not something we could book. Therefore having a week booked for July 7 th in Filey, in a candlelighters caravan was the carrot all the way through high dose chemo. A holiday, that could be cancelled by us if events took over and Harry was too unwell to make it, without leaving us with a whole in our pockets.</div><div>Thankfully we made it, a valuable time to regroup as a family of 4, before what we know now was an onslaught of side effects from radiotherapy. As I've said before, creating happy memories in a place far away from hospital, keeps you going through those very dark days, where the fog is so thick and the mud so deep. </div><div>Fast forward to this June, 3 years on and just over a year since Harry died. We are on a flight on our way home from Turkey. Holidaying as a family of 3, in a country we have never visited before, doing it all inclusive style, another new and making new memories. We haven't holidayed abroad since Harry was age 1, when we went to Nice in France. When pregnant with Callum we didn't want to go abroad, it felt too much hassle and Harry was a wriggler. I remember age 1 the journey home felt like a nightmare. We were sat next to a man reading a broadsheet paper and Harry's wriggling kept disturbing him. I took him to the toilet to stretch our legs and to do something, but deeply regretted this when his wriggling and grabbing meant he broke the soap dispenser. I have thought of this much today on our flight home and the memory made me smile when I went to the toilet mid flight. We are flying with Jet 2 just as we did back then.</div><div>So having Callum make our family complete, but being more of wriggler than Harry, trips abroad on a plane felt far too stressful. I remember going on a train ride from Whitby to Pickering and back when Callum was just 10 months and Harry was just 3. By that time Harry was manageable and enthusiastic about the train ride, Callum, however would not sit still. Having discovered he could walk age 8 1/2 months, he just wanted to be on his feet and I duty fully followed!</div><div>By the time Harry was 4 and Callum was 2, we started to think about holidays abroad, though having discovered centre parcs, we had found a new way to holiday in England. Though replicating this in France or holland sounded inviting.</div><div>However as you all know Harry was diagnosed with cancer just after turning 4 and holidays abroad were put to the back of our minds. We had to fight to merely survive.</div><div>As you all know we had many adventures with Harry in the months that followed his confirmation of relapse. Though we had many smiles, laughs and memories to cherish, it was exhausting. Harry was always up and down. His pain took a cocktail of drugs to manage and the levels varied from day to day or week to week. Support was incredibly minimal. It felt like the hospital had given up, tossed us to one side as Harry wasn't going to live. It had felt like they had shouted a very loud 'NEXT'. </div><div>We were in an unknown world. We had been told Harry had only months to live and so set about creating as many memories as possible. The rate at which we did things makes me dizzy to think about now. You get a strength to continue that you never knew you had.</div><div>However, even we could not continue at the rate we were and so when September 2013 came and Harry entered year 1, a milestone only weeks earlier we were told by the hospice doctors that Harry wouldn't make, we took time to reflect. We felt we had to enter into a new phase of normal. One where we knew Harry was going to die, when, we had no idea, but we needed some sort of routine for the boys and us. We could see that Callum was being spoilt too. He was going to live and we needed him to grow up a lovely sensitive boy, not one who got what ever he wanted or got treat after treat. After all normal life is not like that. Big days out need to be a reward, not an everyday occurrence. Therefore our adventures slowed down. Harry went to school, Callum to nursery and I and Paul remained off work. Life was still unpredictable with Harry and as much as we were creating a routine, it did vary depending on what type of a day Harry was having. He was on fentanyl pain relief patches which changed to buprenorphine, which suited him better, meant he wasn't so drowsy and sick. </div><div>Life ticked on in September 2013, but then Harry started limping again, which we found out at the end of October was due to a fractured femur, not the disease! However, on the same day we found out harry had a fracture, we also learnt that we had the opportunity as a family of 4 to go to Lapland for the day in December and that became the next carrot!</div><div><br></div><div>So Lapland was the last big day out we had, we got to go abroad if only for the day, but a day we will remember for the rest of our lives. It was a magical, fun packed day.</div><div><br></div><div>So, back to our holiday in Turkey! A holiday, so far removed from our previous adventures. A relaxing holiday. A holiday as a family of 3. I know we have come along way in the last year plus, as I know we couldn't have had this holiday last year and enjoyed it. Yes, we missed Harry every day and there was one evening in particular when we had a la carte in the quiet restaurant, where Paul and I looked at each other and commented on the fact that we had an empty chair. This had not been so glaring in the buffet restaurant with the hussle and bussle, but somehow it really mattered sat there that night. </div><div>For us at this time in our lives, the all inclusive aspect was perfect. We felt looked after, no meals to cook, not even the stress of deciding where to eat and where Callum would find something he would like too. Food was available all day, from doughnuts, to pancakes, to ice cream to more healthy options, to cocktails and beer and for Callum a constant supply of slushies and chocolate milkshakes! </div><div>Our hotel had private access to the beach, where food and drinks were also available. </div><div>We certainly chilled out. Spent most days at the pool and then the beach! We did manage to Practise some bartering in the town of Antalya where Callum even got some light up plastic toy for free! </div><div>The hotel had a small fairground (all included too) and Callum was made up that his feet reached the pedals and so he could drive his own car and we could each have a car and enjoy some frivolous fun!</div><div>The holiday was so needed and helped us regroup as a 3. Callum had so much fun. Yes, he talked about Harry, he regularly does, such as when it will be Harry's birthday in September he wants to send Harry something piratie! So we will have to think of something that can be attached to a balloon! </div><div>Being on holiday also means that there will always be those awkward times when you talk to someone new and you know that the conversation will go at some point towards children. There was one couple we bumped into a few times and when the mum and me were sat by the pool, she asked me if Callum was my only child and I said yes, then she asked if I would have more, at which point I told the truth and explained that Callum had an older brother, but he died last year from cancer. I went on to say what a handful the boys were when they were younger being born close together, whereas she had a big age gap between her 2. I guess after dropping the 'bombshell' a natural conversation flowed!</div><div> We became friends with another couple. They were younger than us. On the last night when the conversation was about the age we were when we had children, eventually it seemed the right thing to mention we actually had 2 children. It was strange as the couple said, we had talked of children, but obviously only Callum was with us and our 'confession' explained the use of the word children! </div><div>It is strange talking to new people and people whom you meet for a short time. Paul felt perhaps we should keep a lid on our chest of woe, but it depends on the situation. It is strange having conversations with people and feeling like you miss out chunks to avoid having to say that we had a child whom died of cancer. </div><div>However, I feel I am better at dealing with this and more able to mention Harry and talk about him to others in a more natural way. I hope anyway! </div><div><br></div><div>So back to work, back to school for Callum, however thd summer hols are on the horizon and hopefully we will get away for more adventures in our caravan!</div><div><br></div><div><br></div>Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0tag:blogger.com,1999:blog-8883310378101954785.post-81485890174115225352015-05-20T14:14:00.001-07:002015-05-20T14:14:25.379-07:00Harry's pirate ball<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKEuECbBsFo0bweZ4XuPgoemBcjW9tG-vLR26FTYQcUMcnFxyvIw-vpLIdDzAqxpcJOxss7mNukAHQGtbktOtOxyZLsULmI2MJ9thCP9oqeccnZJqqGTf2X8nsBZrAqDPyaG6-gpmjnw4/s640/blogger-image--2049136554.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKEuECbBsFo0bweZ4XuPgoemBcjW9tG-vLR26FTYQcUMcnFxyvIw-vpLIdDzAqxpcJOxss7mNukAHQGtbktOtOxyZLsULmI2MJ9thCP9oqeccnZJqqGTf2X8nsBZrAqDPyaG6-gpmjnw4/s640/blogger-image--2049136554.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9MahEs6xCBY2u0WgN4BuVmsHzQ6ve7jW_aYOwIbTFTBUpMfFQb33SfID2S8UD1hK4XzCq35RHBztFzHUaybkCnUBa6Rb7wYlGN4SszITOTBgw9Mmeq_kgBIOoxGMUSx4WySYMjQEuJYM/s640/blogger-image-1974265206.jpg" imageanchor="1" style="margin-left: 1em; 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margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx9APlenJFb0C6FBOT1vgFE_lBuxlykS7W7pGx010hSxNsuGOEdX-pKi_ZCWdEI08a2ZQhASrlAdrfMAlxjD92NMxzANxYAu0ckhIINlZZqXaph1GJFZV0SNqZJDSVIPrI-IQ22Tm01yg/s640/blogger-image-331880255.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZuSpOsoGtrWwVisnExUNX82XP2vReX9hz-Kcw8S6R1G6Z135i_hySTCHbROzagCsmKLhHseI1VOiTC5ejnfCElMWySOdJlNjA3wH9AMVWoKCttJHxBNtu7DCpBWJGbY463eMIBlz7dKQ/s640/blogger-image--1740298796.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZuSpOsoGtrWwVisnExUNX82XP2vReX9hz-Kcw8S6R1G6Z135i_hySTCHbROzagCsmKLhHseI1VOiTC5ejnfCElMWySOdJlNjA3wH9AMVWoKCttJHxBNtu7DCpBWJGbY463eMIBlz7dKQ/s640/blogger-image--1740298796.jpg"></a></div>Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0tag:blogger.com,1999:blog-8883310378101954785.post-87552360565342352142015-05-20T14:05:00.001-07:002015-05-20T14:05:57.233-07:00May 2015Wow, the days are tumbling forward as we approach mid way through 2015. <div>We spent Harry's anniversary in Filey, away in our caravan, the sun shone and the weather replicated that of our Candlelighters holiday in June 2013. It felt like harry was with us, dancing in the sky and skipping over the waves. Callum loved being by the seaside. He made a friend almost immediately and they got on so well, biking round the campsite together. It was a shame our paths only crossed for 24 hours. I thought Callum would have made other friends, but the other children had siblings to play with, which is always more intimidating to launch in and express a wish to play with them, particularly when Callum is only 5. I have to say, we enjoyed being away, but seeing other siblings play togetger pulls at our heart strings and highlights our loss. Both sets of grandparents joined us and Callum also spent a day with James, his school friend and also Harry's dear friend too, which was lovely company. </div><div><br></div><div>Coming home was hard, to a house that has so many memories, pictures etc. I have to say I found the day we came home and the day after harder than Harry's anniversary. However, routine soon resumes and leaves little time for pondering, plus last minute preparations were in full swing for Harry's pirate ball. This was held on April 25 th. It was a fantastic night, really lovely. It has been commented on that the atmosphere was so friendly, like a wedding. That was because everyone who came, did so in memory of Harrry. There were people from different areas of our life and friends of friends too.</div><div><br></div><div>We raised £5938, which has been split equally between Candlelighters and Nuzzlets farm. We are so very grateful to all those that sponsored our event; gave donations; raffle prizes; helped with the planning and of course attended; bought the raffle tickets and made the night a great success. </div><div><br></div><div>We had some left over chocolate coins, which were sold at The Whartons school, where Callum attends. £37 was raised from the sale of the coins, which will go towards adopting some animals at Nuzzlets farm for a year! The children are very excited about getting updates on the animals, once they have decided which ones to adopt! It costs £10 to adopt an animal for a year, so with some money added from the school, it is hoped each year can adopt an animal, which would be wonderful! </div><div><br></div><div>The Rotary club in the yorkshire district have agreed to support Candlelighters as one of their charities and this will be launched under the umbrella of 'Harry's legacy'. It has been accepted faster than we thought and now we need to compile some PowerPoint presentations to engage the Rotarians in the work of Candlelighters and how they supported us as a family and how they continue to support us with the opening of their new support centre - the square! Exciting times ahead!</div><div><br></div><div>I will leave you with some photos! <div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmOj_HBs5ltSe-bhFeWg0iig3BxIrYbH47yRbk5I2WjXD0wISpcWbl0P8d_TVcSRWGcYH72NkwPcP0oYx02ErR6jMM3jwpIWp8ZLYofh-i4hNi-fvDUsFWAitsz8gvWQF7m-N71UuHVNA/s640/blogger-image-1354189361.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmOj_HBs5ltSe-bhFeWg0iig3BxIrYbH47yRbk5I2WjXD0wISpcWbl0P8d_TVcSRWGcYH72NkwPcP0oYx02ErR6jMM3jwpIWp8ZLYofh-i4hNi-fvDUsFWAitsz8gvWQF7m-N71UuHVNA/s640/blogger-image-1354189361.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr0rZ8yeChQJDiw7zZ-qp8v6EHDyCIudkuATSP-XLmld8yAhzt28x47Rqpt1_aeS5kzFyJjuqVU93PS4dqa_heodyNnFZv4QyxW7qoEj7TuPUb09aC0Xbg8uMIJf9Op43_cpeJd3BjMdU/s640/blogger-image--1073161892.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr0rZ8yeChQJDiw7zZ-qp8v6EHDyCIudkuATSP-XLmld8yAhzt28x47Rqpt1_aeS5kzFyJjuqVU93PS4dqa_heodyNnFZv4QyxW7qoEj7TuPUb09aC0Xbg8uMIJf9Op43_cpeJd3BjMdU/s640/blogger-image--1073161892.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVuKS2HwYb-OnfnKbov1bryl5daLIG359EKPQHnqZfAXNuI7koW-alAilryyyrBQRzwD9flI_1hkZsZgtEmCkX66f69U-Y8zAtcBv27YoOl2XWN-7IlSSYoWkHUeLeuGwUqkSBx2Ndeoc/s640/blogger-image--1124824171.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVuKS2HwYb-OnfnKbov1bryl5daLIG359EKPQHnqZfAXNuI7koW-alAilryyyrBQRzwD9flI_1hkZsZgtEmCkX66f69U-Y8zAtcBv27YoOl2XWN-7IlSSYoWkHUeLeuGwUqkSBx2Ndeoc/s640/blogger-image--1124824171.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU2FQ7nBInvtr5jYsd5qB8_aYmVqrzPOUaDVugxj5Trdz1_4GztwZ8ufmAsEfFB5pzAoWPGxerIpK5hEuiRUCWmfhv3V5okotH_IfkPzywixvbnWzBdjGO1q0osyf-QEx0g7Ya3pwozY0/s640/blogger-image--1106794359.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU2FQ7nBInvtr5jYsd5qB8_aYmVqrzPOUaDVugxj5Trdz1_4GztwZ8ufmAsEfFB5pzAoWPGxerIpK5hEuiRUCWmfhv3V5okotH_IfkPzywixvbnWzBdjGO1q0osyf-QEx0g7Ya3pwozY0/s640/blogger-image--1106794359.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhazyHx16UieZ8LGxODhnehAIqBE6Rdb3e0fXzZMTzqLBXoSXIBt9Aq3w8zLqO6R9NJ_heSh1EObnGxD7D528IngHIgaEBckwykb-TOAsuhUfiUJEx9reURD0_OfQ1fF4cGR54kGbHf2Co/s640/blogger-image-1641775289.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhazyHx16UieZ8LGxODhnehAIqBE6Rdb3e0fXzZMTzqLBXoSXIBt9Aq3w8zLqO6R9NJ_heSh1EObnGxD7D528IngHIgaEBckwykb-TOAsuhUfiUJEx9reURD0_OfQ1fF4cGR54kGbHf2Co/s640/blogger-image-1641775289.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrNojAab7TdDVv8FBCCAqdL79mg_Brg5ZqWBhRP6oiFquJkU6IDbRFc6WL-2xaKbEcYpCUJSpolvqjkcGQsm-qIJCW7z7hMnJJTNuVYxVayfEUeRv9eRZ2XEeNAsFRzjztrwSmW1Kwxqc/s640/blogger-image--1509954519.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrNojAab7TdDVv8FBCCAqdL79mg_Brg5ZqWBhRP6oiFquJkU6IDbRFc6WL-2xaKbEcYpCUJSpolvqjkcGQsm-qIJCW7z7hMnJJTNuVYxVayfEUeRv9eRZ2XEeNAsFRzjztrwSmW1Kwxqc/s640/blogger-image--1509954519.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYpGfShDSn8PaA4exgLcWh_BryoqgSaiLOjj25N_9isPH4rFNhNY8mBVvoeHWjdqFbHFXLklSuW6byhOCqCbcM_UZVbMjbi4pvoLEJGeyqOCJ3EU7Strnork2PQYJGOtssAPExM6dSOf8/s640/blogger-image-793480459.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYpGfShDSn8PaA4exgLcWh_BryoqgSaiLOjj25N_9isPH4rFNhNY8mBVvoeHWjdqFbHFXLklSuW6byhOCqCbcM_UZVbMjbi4pvoLEJGeyqOCJ3EU7Strnork2PQYJGOtssAPExM6dSOf8/s640/blogger-image-793480459.jpg"></a></div></div><div><br></div>Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0tag:blogger.com,1999:blog-8883310378101954785.post-34158871975412789472015-04-01T14:20:00.001-07:002015-04-01T14:39:07.240-07:00Nearly 1 year onNext week on the 8 th April will be the date that signifies the first anniversary of Harry's death. At 7.40 pm harry took his last breath. Having re read some of the entries I have written over the last year i can say that I have come along way in 12 months. Some days the pain is so intense and our miss of harry is as roar as it was the day he died, but I suppose it would be true to say the length of time these phases last has decreased. The waves not quite as ferrocious as they were. The loss becomes something different at times, the loss of dreams. The loss of our family of 4. The loss of what was supposed to be. The loss of seeing harry grow up and be a year older. The loss of managing sibling rivalry, the loss of the sound of laughter between 2 boys that loved each other so much. The loss of hearing how Harry would be doing at parents evening. The knowledge that he will be forever 6. We watch his friends grow and we will never see Harry grow. Harry's favourite theme will always be pirates. He will always love lego, listening to One Direction and pretending to play air guitar. Time will stand still in terms of Harry's favourite things, whilst his peers will have constantly changing fads and obsessions. <div><br></div><div>Our ball to be held on April 25 th has a pirate theme to honour Harry's love of all things piratey! The ball will mark the first anniversary of Harry's death. We have a massive treasure chest that has been filled 2 inch deep with 200 bags of chocolate gold coins, to be a centre piece on our sweetie table! That's a lot of loot for our guests to get their hands on. We still have tickets if anyone wants to cone, but need the money in for the 10 th April. I hasten to add it is NOT fancy dress!</div><div><br></div><div>We have thought lots about whether we have another child, to make us a family of 4 again. There is no definitive answer, but the thought of going back to having babies is not something I feel ready for or even want in the future. The truth is that since Harry was born 7 years ago I have never had much me time. Callum was born when Harry was age 2, which proved very challenging at times, managing a toddler and a baby. Callum was always so determined, not a content baby and not one that slept well. Very early mornings was the order of the day for several years. Just as life seemed to be settling down post our house move and the boys became able to play more contentedly together and I could sit and have a cuppa, cancer rolled up and swept us off our feet. Cancer turned our world upside down. Suddenly it felt like we had a new born again as the effects of treatment meant we constantly had sleepless nights attending to Harry. Often vomit bowl at the ready. Post treatment and when Harry had relapsed, cancer itself caused many side effects, such as pain and managing this was a full time job some days. The emotional rollercoaster of dealing with this for 2.5 years meant we were fatigued beyond imaginable by most. Thus, going into motherhood again as I begin to reclaim my life a bit just for me, seems extremely scary. Paul's shifts mean I spend a lot of time as a single parent. This is ok now as Callum and I can have such fun and adventures. Having a baby in tow would make planning outings more difficult and challenging. Callum could feel left out, or he could feel like the grown up brother. He has said that he wants a brother, but aged between 3-7 and he should be called Harry! If we were to have another baby then it should be a boy not a sister! We could adopt, but I don't think we feel in a position to take on the challenges of someone else's child, probably being age 3 plus. Our finances were always geared up to having lower child care fees as the boys grew, to set against the fact our mortgage grew with the house move. A baby would mean we had no spare money again.</div><div>However, a baby could bring new hope, new meaning to our family. Callum would have a sibling and though the age gap would be great compared to what we set out to achieve, when Callum is older he could very much appreciate having a sibling. In some ways I feel robbed of enjoying Callum as a toddler, due to having spent so much time with Harry in hospital or managing his needs at home. My patients was curbed by the fatigue I felt from managing Harry. However, I have a very special relationship with Callum now and he will openly say he has the best mummy and daddy a boy could wish for!</div><div>Currently we are enjoying adventures away in our caravan. We have a holiday in Turkey to look forward to. A holiday we felt unable to book last year or able to enjoy. Callum is having swimming lessons and can now swim 20 meters without arm bands. He knows that we are going to Turkey, where there will be slides into the hotel pool. He is very excited about going as we are too. I have been buying summer clothes, having not had a holiday abroad in years. Apart from our day trip to Lapland, we last went abroad to Nice when Harry was age 1. This is therefore an adventure for us and a first to be going all inclusive! </div><div>Our major series mud run raised over £1100 with gift aid for Candlelighters and Martin House. Thank you to all those that sponsored us. Our ball is on the horizon and we hope to raise lots more for Candlelighters and Nuzzlets farm. There is the possibility of another fundraising venture on the horizon too, which would be under the umbrella of Harry's legacy, this will take a few months to secure, but watch this space. </div><div>Harry may have lived till he was only 6, but his memory will live on. </div><div>This next couple of weeks will be hard to get through as the 1 st year of living without Harry draws to a close and the 2nd year begins. My memory gets in a tangle these days as I still think it was last year that we had great adventures with Harry, but the reality is that it was 2 years ago. The passage of time can be complex. Some days our adventures seem like yesterday and others they feel an eternity away. </div><div>This time last year was truly, truly awful. Those days I think about, what Harry endured, I think about, but most of all I think about Harry's smile, his courage and his determination to the bitter end. </div><div><br></div><div>Fly high Harry, we will always love you. Forever in our hearts and memories. You are still shaping the future as we raise money because of you, to help create a better path through the minefield that childhood cancer is, from diagnosis to beyond the ashes. </div><div><br></div><div><div><br></div><div><br><div><br></div><div><br></div></div></div>Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0tag:blogger.com,1999:blog-8883310378101954785.post-1926652822209122432015-03-12T14:00:00.001-07:002015-03-12T14:08:22.435-07:00March 2015This Sunday is Mothering Sunday, my first without Harry. I am trying not to think about what the day means. If you remember from my last blogg, I am in fact doing a 5 km mud run that includes an assault course. The assault course involves crawling under barbed wire in the mud, going through mud ditches and freezing cold rivers! In January it seemed a good idea, I thought the weather would be spring like, but currently it is still very mixed and wintery!<div>Having entered this challenge at least I have been focused on this and not Mother's Day. I couldn't face going to church and collecting flowers from one son, not 2. The focus being on mother's and their children. I must be greatful that I still have Callum, my mummy status well and truly still alive. </div><div>Here is a link to our charity page, we are completing the challenge in aid of Martin House Hospice and Candlelighters.</div><div><br></div><div><a href="http://uk.virginmoneygiving.com/team/wharfedalewarriors10">http://uk.virginmoneygiving.com/team/wharfedalewarriors10</a></div><div><br></div><div>Candlelighters have opened up a new building called 'The Square', it will be a new support centre. It is a 4 story building just outside LGI, very handy for the oncology wards. It has been refurbished throughout, restoring features to their former glory. I visited 'The Square' a couple of weeks ago and met a couple of oncology mums whom have children post treatment. The centre is lovely. There is a reception area with lots of seating and tea and coffee readily available, as were cakes! The team are expanding at Candlelighters and the charity is getting bigger, being able to provide much needed support. I have been involved in research with regards what support is needed to support oncology families and friends and at long last the tide is turning. Candlelighters have a 10 year lease on the building and money ring fenced for support workers. Other support workers will be commissioned as the areas of need are identified from families visiting the centre. There is also a therapy room providing massages and reflexology to those families affected by oncology. The future looks very exciting. A group of bereaved mums all with children whom died from Neuroblastoma will be meeting up next week. I know some of the mums, but not well and facebook provides the main link as we live different sides of leeds. 'the Square' will provide a tranquil environment for us to meet up and share our experiences and support each other. Bereavement I am realising is with us for life. There is no real recovery, but an ability to learn to cope better. There will always be those down days, those sudden flashbacks, but we are learning to live again. We have bought a touring caravan to try and just do that. Regroup as a 3 and eventually have holidays with others.</div><div>Harry's first anniversary is on the horizon. My eyes well up thinking of that last day, how I told harry to fly away, to a place where he would have no pain. His skin was breaking down all around his bottom, with several grade 5 pressure sores. No mother should have to smell her son's rotting flesh, or dress the wounds. That last day was so surreal. I knew he was close to dying. I remember getting my hair done that day, as I knew we would be attending his funeral in the next couple of weeks and didn't know if I would have the strength to sit through a hair dressers appointment once he had died! Strange really. However, I was with Harry at the very end, holding his hand and telling him that it was ok for him to go from this world. </div><div>We have so many happy memories to hold on to and share. I was watching videos with Callum the other day. He can't remember a lot of things we did, he can't remember harry being in hospital, but he will always love his brother, that I do know. </div>Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0tag:blogger.com,1999:blog-8883310378101954785.post-43910545080687599002015-01-18T15:06:00.001-08:002015-01-18T15:06:53.575-08:00Christmas photos <br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhikrid5X6k2sMrz40vOiDTfsfGudSmHUoYHs-cZvrA1qSPuJ_qcvCndlhYl5DUB5hJyI9UwesX4g-KkyjRkwIKuIn6Q8YETfPR86NCYqokkTigvRfquUXW5FYY-z8nAWqP0oRTSxP5FSA/s640/blogger-image--557057899.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhikrid5X6k2sMrz40vOiDTfsfGudSmHUoYHs-cZvrA1qSPuJ_qcvCndlhYl5DUB5hJyI9UwesX4g-KkyjRkwIKuIn6Q8YETfPR86NCYqokkTigvRfquUXW5FYY-z8nAWqP0oRTSxP5FSA/s640/blogger-image--557057899.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigBUfrKz35q2bXFJ5oaU_gzvDbRjOHRYijnAqqs0r7ZlMPeOH-Ggmz0tOn70Z4XtuUS5U5t4QO5QtDMzeqQfj3Qjs8dd8C3ZGfFF_8x0-GR6ln8ns1BIKx9-Vo5hfLGjpZwv1vRrBjkKc/s640/blogger-image--1165287463.jpg" imageanchor="1" style="margin-left: 1em; 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margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8d1Je7nVRWqkNDLl8U_omcvXLpb_UktCjAG27AX27DEQj5oBh1o0cLhJEghrqHs3YVJFZzE8LK7pNOE4YNuQf4rmwZbcWz-qC06-K5_PksYiQZbgxeiHP4Ll8l04jaR4mKlPy0_P4q8U/s640/blogger-image-2120182504.jpg"></a></div>Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0tag:blogger.com,1999:blog-8883310378101954785.post-7490714340503486712015-01-18T15:05:00.001-08:002015-01-18T15:05:44.509-08:00Post Christmas visit to Harry's tree<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYhZeOivq77Ex0fw1smlDEDRxJrl1e9JguyisC5jy-_7i5gQO8Iwhuhj98pDcZGzmMt6-NkSXGxM9IMhyXyZ3vYcSlv4q3xUEBob2CpOnSif19zSwUuoRvUYJjNQZLBqVBbTFNBv1HWaU/s640/blogger-image--1773819433.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYhZeOivq77Ex0fw1smlDEDRxJrl1e9JguyisC5jy-_7i5gQO8Iwhuhj98pDcZGzmMt6-NkSXGxM9IMhyXyZ3vYcSlv4q3xUEBob2CpOnSif19zSwUuoRvUYJjNQZLBqVBbTFNBv1HWaU/s640/blogger-image--1773819433.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTLmI4NNPjPyTsM60gbpzqrLmOVMBc0OKe_cLCDdiPO9AhC6gn80IfZkkdtgOS1hsxjfgR3o93bZItsMQZ0P0RlOy13tGa19Yc7PaqwWhAXIx6ebFFeSNwODtUbeIpYJPZs1jLgEMu_8E/s640/blogger-image-1539547937.jpg" imageanchor="1" style="margin-left: 1em; 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We headed to Whitby from the Sunday before Christmas until Boxing Day. We had booked it a while back, when we realised we just couldn't face spending Christmas at home without Harry. It was a coping strategy and one which worked. We all love the seaside and especially the East Coast. We do actually have quite a few memories of times with Harry in whitby, from taking him as a baby, to when he was 3 and we holidayed at Sandsend, to taking him during treatment. The first day out we had post the beginning of treatment was in January 2012, we were so shuffed that Harry had eaten his fish and chips, though the moment lasted seconds before Harry threw it all back up including his NG tube! Perhaps it was an initiation test into the world of cancer and our first lesson in learning how to carry on, enjoy the day and get used to deviated trips to <div>LGI!</div><div>We all had our own thoughts about Harry over Christmas. Callum could remember building sand castles on the beach with Harry and talked about him too, which was lovely to hear, but painful too, as it enhanced our miss of him. I felt close to Harry in Whitby and I am sure he was swirling above us smiling. I had thought we would have some sought of ceremony to acknowledge Harry, but this wasn't needed as we acknowledged him constantly. The weather was kind to us and Callum just loved going on the beach everyday. Getting out for a Christmas Day walk at Sandsend was refreshing and lovely too. The change of scenery was definitely good for us. </div><div>On our return Paul then commenced a set of 6 shifts. I saw other members of the family with Callum, then headed to Derby for New Year's Eve. Since paul was working nights I took the opportunity to visit Kate and her little girl Eva. Callum gets on well with Eva, being of similar age and he really enjoyed having company. My aim was to return home New Year's Day, until I slipped backwards on the ice and fell back on my head. This was a frightening experience and all I could think of was that I was going to have a brain haemorrhage or in time I will develop a brain tumour! Well, when the inevitable has happened ie childhood cancer, the unlikely does happen. I was also acutely aware that though I miss Harry and want to see him again, actually I feel he is in a good place now and my journey on earth needs to continue as Callum needs me more! I was checked out at A and E, seen pretty quickly due to the nature of the injury and returned to Kate's for another night. So new year started with a bang! </div><div>January is a strange month, one where dark mornings and nights continue, the hype of Christmas over and spring seems long awaited.</div><div>For us though, January symbolises something new, the month Harry's cancer grew silently, paralysed him from the waist down and really was the beginning of the end. Tonight, one year ago, I thought we had months still ahead of us as a family of 4, but 72 hours later Harry was in trouble, he'd lost the feeling in his legs. </div><div>Grief has it's twists and turns, just as I feel upbeat, I am suddenly struck down by pangs of heart ache. We take baby steps and try and get through each day. I know the next few months are not going to be easy as we relive Harry's last few weeks with us. I miss Harry more than ever at the moment, the true realisation that he has gone forever, yes he lives on in our hearts, but never being able to cuddle or kiss him again is truly sad. I also remember the battle to keep on top of Harry's pain those very last weeks and how Harry couldn't tolerate being cuddled. He always reminded us so very frequently how much he loved us. </div><div>Callum is an inspiration and he makes me smile. He is learning to live with his grief too and can become angry and upset at times, right out of the blue. He so very much treasures Becky and Bumbi - Harry's toy dogs, in fact they are going to get married and we have to make them outfits! </div><div>I am also beginning to realise how much Harry meant to his friends. They still very much miss him. For some of Harry's friends who had know him since birth, he was a constant. These children have had to face loss and bereavement at such a young age, one where emotions are mixed and misunderstood. They have also had to learn that humans can die at any age and this fact has for some unsettled them and meant they have become aware of their own mortality at an age where playing should be the main agenda. </div><div>I have also become aware how much harry's death has impacted on our friends too. I realise that there is a sadness amongst many of us. I don't know what to do about this or how to move on at times. The journey of grief is a steep learning curve. We are still climbing that massive mountain to recovery. At present it feels like we are stumbling, slipping and sliding in the mud, at times we manage to get a grip and take giant leaps forwards and other days, the rain sets in and the mud thickens and we slide down a few feet. I realise it is still early days and we need to be kind to ourselves. </div><div>I have therefore entered myself along with 10 other mum's into the major series challenge on March 15 th. It is a 5 km assault course run by the army! March 15 th is Mother's Day and what better way to ensure I don't end up in an emotional heap missing Harry, but to honour his memory, by completing this challenge in aid of Candlelighters and Martin House! I may end up in a physically exhausted muddy heap by the end, but I am told it is exhilarating! Watch this space to find out more! We are also getting organised for Harry's ball on Aoril 25 th. Tickets are £40 each and the event is being held at The Craiglands Hotel. We are collecting money in thick and fast, so get your names down if you want to attend. </div>Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0tag:blogger.com,1999:blog-8883310378101954785.post-51642401493343226122014-12-13T16:27:00.001-08:002014-12-13T16:36:42.135-08:00Professional. Photos<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3-9_caXnqgzWw7O0MWPN6RyTf2VrXKBvFEr6j5DG1e8vcl53TWKg4sBls_eZ8cqI1RX-c5uvP4Ku9vzGfkDqH2ZWm3Xxbs2jDXDn7AItR43XwDuewO5YzkCrFEcHL8EzlblKpst9gXCA/s640/blogger-image-645201194.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3-9_caXnqgzWw7O0MWPN6RyTf2VrXKBvFEr6j5DG1e8vcl53TWKg4sBls_eZ8cqI1RX-c5uvP4Ku9vzGfkDqH2ZWm3Xxbs2jDXDn7AItR43XwDuewO5YzkCrFEcHL8EzlblKpst9gXCA/s640/blogger-image-645201194.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6dLm09q5Xnz-kBP3Jya3aCdzudvtlJdz8iIWtZ99sUxM2mP0nzND2Q6pj1nOzmXWGPJ6oGXg001mXTcMz7n71v06j9FpGIFXHBkUz-6aPcatU3I6VFg2vUBR2FM1OShVg4LHU4Yk-Wug/s640/blogger-image--703050246.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6dLm09q5Xnz-kBP3Jya3aCdzudvtlJdz8iIWtZ99sUxM2mP0nzND2Q6pj1nOzmXWGPJ6oGXg001mXTcMz7n71v06j9FpGIFXHBkUz-6aPcatU3I6VFg2vUBR2FM1OShVg4LHU4Yk-Wug/s640/blogger-image--703050246.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvPd3PUA5rbgPIVUvz0YLBaLZP3pAfN0DQTh5Odkn-1aWaOmATTqR516gEG8Qk7oYbxXXD0RwxlOOpzoU_YIcPzHkqUdDPfmDsH5CvNar34PGbDQb8OVE6-qzMtwrkdGeuNw98WIm4MxQ/s640/blogger-image-200441620.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvPd3PUA5rbgPIVUvz0YLBaLZP3pAfN0DQTh5Odkn-1aWaOmATTqR516gEG8Qk7oYbxXXD0RwxlOOpzoU_YIcPzHkqUdDPfmDsH5CvNar34PGbDQb8OVE6-qzMtwrkdGeuNw98WIm4MxQ/s640/blogger-image-200441620.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmnLHGaXuSv0Zkk8r6-1hxqfHj428CoZXpnT-FnFACVSiPQWh6i24cqD-lp5cyou2vBeX_NxZ7_g1TBeIyXZheffKf3z4bI2KGklcrwjoej4RyL5e96HLZ8BnU6X_r0FqAGsMCBZfThFo/s640/blogger-image-533764587.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmnLHGaXuSv0Zkk8r6-1hxqfHj428CoZXpnT-FnFACVSiPQWh6i24cqD-lp5cyou2vBeX_NxZ7_g1TBeIyXZheffKf3z4bI2KGklcrwjoej4RyL5e96HLZ8BnU6X_r0FqAGsMCBZfThFo/s640/blogger-image-533764587.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5p0Obs2r6sPG6ti3vpCtmi_Gyj9d0FuRRqb4ZtK9GFIRQpBhssXUCSamllTYvCHovzxcxmfaqYJAHLw-S_N_cDfGkUZXBJTBIAARr852W9r2acvJZw74W-CRrsiUTnh9REPqD0vwhpno/s640/blogger-image-988203167.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5p0Obs2r6sPG6ti3vpCtmi_Gyj9d0FuRRqb4ZtK9GFIRQpBhssXUCSamllTYvCHovzxcxmfaqYJAHLw-S_N_cDfGkUZXBJTBIAARr852W9r2acvJZw74W-CRrsiUTnh9REPqD0vwhpno/s640/blogger-image-988203167.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhc85qWF9GNEjOliDsJBvvOvKAmzkV2-HGdLlmIsGKSKvVrLiAxUhEH8eywlD9WL93DMF3giyY8p1K694jBUTYJy1J04gFWGMBELLH5sxlRKDQGcbBDPcnjgCuhnyV8msNBj3eIuGwSmI/s640/blogger-image-1755496943.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhc85qWF9GNEjOliDsJBvvOvKAmzkV2-HGdLlmIsGKSKvVrLiAxUhEH8eywlD9WL93DMF3giyY8p1K694jBUTYJy1J04gFWGMBELLH5sxlRKDQGcbBDPcnjgCuhnyV8msNBj3eIuGwSmI/s640/blogger-image-1755496943.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGGLOxSsvSz2azdS_-YmbodA52y2rICUW8Zw4jjAnEf6m33MwATWyGwHBW3q49-ZmrbY8St7yp3qQzD015CC_cBGfF0suB5uOIIDAAFa6b0B-ujRldnAGiFmLzYrspJxvsXSHUUVNOmNk/s640/blogger-image--414763449.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGGLOxSsvSz2azdS_-YmbodA52y2rICUW8Zw4jjAnEf6m33MwATWyGwHBW3q49-ZmrbY8St7yp3qQzD015CC_cBGfF0suB5uOIIDAAFa6b0B-ujRldnAGiFmLzYrspJxvsXSHUUVNOmNk/s640/blogger-image--414763449.jpg"></a></div>Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0tag:blogger.com,1999:blog-8883310378101954785.post-48043457743922600862014-12-13T15:48:00.001-08:002014-12-13T16:13:02.276-08:00December 2014I can't believe that we have somehow managed to keep tumbling forwards to December. Such a strange month with parallels of sadness and happiness in different amounts each and every day. Sadness for not having Harry, missing his beautiful smile and the sound of his laughter. Sadness for only having memories to look back on, savour and cherish. Sadness that another year looms, a year where we get further away from the time we held Harry's hand, felt his warm body, nursed him and let him ago into a world where he could be pain free. A year where I have known other little ones die and know their families embark in that journey of grief too. A year where I know children are still battling for 'normality' post treatment, a year where I have witnessed children relapse and also be diagnosed with new cancers. <div>We started this year with Harry doing really well. I had concerns about the levels of buprenorphine that he was on to manage his pain and the side effects this had on him. I was battling to secure a meeting with our consultant and the consultant from Martin House to review Harry, seeing as no one had reviewed him since he was seen in the fracture clinic in November. We felt in the dark with regards managing his drugs, but felt that Harry could have lasted months. I also secured a meeting with school mid Jan and discussed how extra support could be provided for Harry, as the drugs clouded his memory significantly. New learning was very hard for him. What I had no idea about was whilst we were preparing for our centre parcs break, which happily seemed possible, a tumour was growing rapidly on Harry's spine. Cancer grows silently. On Saturday 18 th January I had 2 giddy boys in the swimming pool. I remember being exasperated with them for playing about in the changing rooms afterwards, because we had a tight schedule to get them both to birthday parties at separate locations. Each enjoyed the parties and then we headed over to Grandma and Grandad's house. We stopped at some friends on the way. Harry was not himself at our friend's house, complaining of pain, so I gave him extra oral pain relief once at Paul's parents house. I remember the pain relief made Harry 'happy' and he wanted to hug the TV as there were animals on it. He had an unsettled night. However he awoke the next day in a good mood, but seemed unsteady on his feet, I thought he was messing around. However, when he was trialling out a larger bike in the afternoon, it was evident he couldn't ride the bike due to poor balance. Only a few hours later, Harry had no feeling from his waist down. I realised this when I sat him on the dining room chair and only by luck I reacted quickly to stop him falling forwards and hitting his head on the table, he had no sitting balance. We made phone calls and decided to take him to LGI on the Monday, yes the day we were due to go to centre parcs. The worst day for cancer to take over our lives again. Harry had a mantra all day in lgi and it was 'I want to go to centre parcs!'</div><div>I had been organised the night before and had packed mine and Harry's things together and Paul and Callum's things together. I knew Harry would end up being in hospital overnight. Paul came to lgi on Monday and once a plan had been established for an MRI scan we decided that Paul should head to centre parcs with Callum and meet our friends as planned. Having had an MRI and consequently radiotherapy to shrink the tumour, Harry and I made it to join the others at centre parcs for 1 night. Probably one of the biggest achievements of my life. The show went on. We delivered Harry's wish to be there, not as we planned, but we got there and in the swimming pool, capping Harry's catheter creatively as proper swimming attachments had not arrived in time. </div><div>The tumour was the beginning of the very end. For a couple of weeks anything seemed possible as Harry very quickly adapted to using his friend's wheelchair, but Harry didn't just have a physical disability, such as a spinal injury, but cancer, incurable cancer. Thus right before our eyes we saw the cancer take hold. Blood and platelet transfusions couldn't hold Harry's blood counts high enough for long and then he got an infection in his line. He had several grade 5 pressure sores, his appetite was zero and his pain was hard to control. The last 2 weeks were unbearable, we wished everyday of those last 2 weeks for Harry's pain to end, the hardest thing a mother could ever concede, but the kindest thing for Harry. </div><div>So as you all know Harry slipped away at about 7.40 pm on the 8 th April with myself and Julie White at his side, whilst daddy cuddled Callum downstairs. </div><div><br></div><div>So fast forward to December. We have put decorations up, cried over seeing decorations that Harry so lovingly decorated over the last 2 years, cried over seeing the decorations we bought in Lapland, the memories of that wonderful day touch our hearts warmly. Cried over the Santa sack that has Harry's name on it being empty this Christmas. I also have shed tears over deciding which photos to choose from our professional photo shoot which myself, my sister, Olivia and Callum did, because these photos do not have Harry and symbolise another giant leap forward.</div><div>Whilst we shed tears, we smile too. Callum brings such a large light into our lives. He is a star in his nativity play and he is a STAR. He has grown up so very much since starting school. He LOVES arts and crafts and can start a project and be as manic about it as Harry was. I never saw that happening! Callum talks lots about Harry. He saw the film 'Father Christmas' today and talked about Harry as he saw Father Christmas travel through the skies on his sleigh. We struggle to comprehend heaven, the after life, what it is, how we look. To Callum he thinks we can go and visit Harry in a rocket or his idea today was to send a telephone up to him via a balloon so we can talk to him. If only! Callum talks fondly of Harry, which I treasure. Callum has just started wearing Harry's last pair of trainers. The trainers were bought in January this year. I remember the day distinctly that we bought them, Harry was in his wheelchair. Harry's trainers were getting on the small side, I was aware of the fact that he couldn't feel his toes and didn't want him getting pressure sores, so we got him new larger trainers, with the hope that the radiotherapy would work and he would soon walk in them. Now Callum is able to take those trainers on new adventures, to run far and wide and carry on the meaning of life! </div>Sarah Buckleyhttp://www.blogger.com/profile/13170221624331928300noreply@blogger.com0