We try so hard to make the most of life without you darling boy but it is so vey hard. We miss so many things about you, especially at Christmas when families are all supposed to be together. You will be in our hearts and minds all day.
Writing helps me. I work so very hard every day to put on a cheerful 'face' - especially for my wonderful Jesse who is super sensitive to anyone's mood shift in the house. Andrew and I played down Skye's impending birthday this year as we didn't want to make life all about Skye and thought Jesse would prefer the limelight for a while. How wrong we were!
On the way back from school he said "So what are we doing for Skye's birthday this year? It is very cool to be nine, we must celebrate." I can't put into words the level of 'knowing' Jesse seems to have. He is quite exceptional in his ability to pick up on how Andrew and I are feeling and always tries to make things better.
This morning he got himself up, dressed, ate breakfast and wrote the note above all before the rest of us even roused. Jesse's love for his big brother is as strong now as it has always been and no amount of time will change that. I forget that Jesse needs and wants to be allowed to think and talk about Skye just as much as we need do and I will continue to encourage that.
At Jesse's request, we are making a cake and celebrating the coolness of being 9!
As you watch the fireworks tonight, please remember our darling Skye on his 9th Birthday.
Today, my heart was bleeding for a wonderful mother and father who had to attend the funeral of their son. I have never been in so much awe of parents who have been such a constant loving framework and source of entertainment for their dear boy.
We met on the ward four years ago and Jesse became friends with this little boy as they were both two years old and shared the same immense pleasure for the big daily visit off the ward to visit the 'whirly whirly' charity box! When restricted to the confines of the ward, Jesse recorded a little video to show his pal.
I remember being able to hide my emotions from Skye so as not to worry him but clearly couldn't shield Jesse from my pain and looking back at this video, I see how much he picked up on at such a young age. He is still my beacon of light and I am so very proud of, and grateful for him. I have realised that it would be whole heartedly unfair to subject him to the anguish and pain I feel inside every day when I wake up and so, take a deep breath, (some days very deep,) and smile to the world.
What I witnessed today was so inspiring; a mother who was being forced to say goodbye to her only child and although you could see in her eyes her heart was shattered, she was able to smile for the sake of the guests at the funeral and think about their needs. It is no wonder that her little boy was the kindest, most thoughtful chap I have ever had the privilege to meet.
We were asked today to keep love and hope in our hearts, it therefore only feels right to share this message as far and wide as possible in his memory.
Driving home, I also decided to share a poem I carry round in my purse every day. This is for any mum out there who has a piece of her soul elsewhere but continues with a smile for the sake of others.
"We would like to thank all those who have been inspired and motivated by Skye and who have helped us get to this point. We truly couldn't have done it without you." Sally & Andrew
Recent new discoveries by the paediatric brain tumour research group at the Northern Institute for Cancer Research led by Prof. Steve Clifford, have been able to sub divide the most common type of childhood brain tumour and therefore provide more bespoke and in some cases, gentler treatments.
Brain tumours are the cancer responsible for most young lives lost.
Prof. Steve Clifford, said that in the future, patients might not need to go through such aggressive treatment. "This new discovery allows us to undertake studies to see how we could use these insights to personalise treatments according to the biological features of each patient's tumour. We are inspired by Skye’s story and the fundraising efforts of Blue Skye Thinking."
Blue Skye Thinking funds Gemma Llargués Sistac (who has a degree in genetics), to assist Prof. Steve Clifford. The Paediatric Brain Tumour Research Group at the Northern Institute for Cancer Research led by Prof. Clifford, Dr. Williamson and Prof. Bailey, comprises over 20 scientists and clinicians work towards a better understanding of the biological basis of nervous system tumours, and translating this knowledge into new and better therapeutic strategies.
Gemma Llargués Sistac said "Blue Skye Thinking is a Charity that understands the struggle that research groups encounter when trying to establish new ways to treat childhood cancer. Supporting research as the charity does, brings an opportunity to develop new therapies to improve survival rates of children with brain tumours, which can be translated into better quality of life and reduced toxicities related to therapy in surviving patients."
Miss Sistac is following up targets that were implicated by the study and reported in Lancet Oncology, to translate these discoveries into frontline treatment. There is a long road for this breakthrough to benefit children on the ward.
One of Skye's Consultants, Dr Mark Gaze, Consultant Clinical Oncologist at Great Ormond Street Hospital (GOSH) & University College Hospital (UCH) Tweeted, "Some good news here - but the pipeline is a long one. Clinical research to validate theoretical advances takes time."
It also takes funding which is why Blue Skye Thinking is determined to fight on to reach our next target.
Three years since you drew your last breath, yet it feels like yesterday. We re-live that day over and over and wish with all our hearts we could have stopped time and gone back to happier, healthier times to be laughing with you again. We miss you so very much, you deserved more from life.
We are thrilled to announce the new addition to the Hall Family - Beau Elliot, born Saturday 24th June 6.29am weighing an impressive 9lb 6oz!
We are all smitten with him and our only wish would be that his big brother could be here to give him a big cuddle.
Mummy has been snap happy as she repeats her mantra "You never get these times back".
I hope you don't mind me sharing this video I came across at the weekend when looking though clips of my beautiful, brave boy.
Chemotherapy causes many severe side effects and the damage to fast growing cells of the mucosa in the mouth is just one of them. Skye got relief by dabbing his face with water but his little brother Jesse couldn't resist but join in too.
This clip reminds me so very much of the huge love they had for each other.
Oh Skye, we miss you so very much every second of every day, you brave, brave boy!
Feeling rather relieved today as we are so close to our final fundraising target and the amazing accolade of becoming finalists for the prestigious Oxford Business Awards might just help us hit our total! All we need now is for local businesses to recognise the incredible effort and massive strides Blue Skye Thinking is making in the world of Children's Cancer.
We have not been placed as finalists in one category but TWO!!
Many congratulations to Special Effect and Sobell House, great to see our name amongst such wonderful organisations!
It doesn't stop there...
Tune into BBC One at 4.30pm today to see much loved BBC presenter and antiques expert Jonty Hearnden, buy and sell rather interesting items on 'Put Your Money Where Your Mouth Is' raising funds and giving a plug for his chosen Charity - guess who??? Watch again on BBC iPlayer
If anyone is considering doing a Summer Ball or big event where a charity auction would fit in well, I can highly recommend Jonty. He is helpful, honest and a really good sport when it comes to auctions. He can also provide his own bought in art such as PIcasso and Dali limited editions which always bring in a profit -providing you run the event for us of course!!
Must go as have just been scammed for a double buggy purchase I have just made to accommodate our new arrival - paid in full and it never arrived. They have apparently sold the second hand buggy several times over - why are some people so dishonest when the gooduns like Skye receive such a terrible fate - I just don't get the world sometimes....
It would seem fitting on this Mothers’ Day, to share with you the lovely news that we are expecting our fourth child, due in June this year. We consider ourselves very lucky to be able to treasure and nurture a new life and very much hope that Skye’s vision and values will rub off on his siblings, despite not being able to be the amazing big brother he would have continued to be, had he lived.
Jesse is very excited and has been telling Flynn that he will now not only have two big brothers but also a little brother or sister to play with too. Another bitter-sweet day ahead, desperately wishing my first born was able to bounce into the bedroom with a cup of water and burnt toast with his little brothers. Thankful too that I did get a cup of water and burnt toast! Jesse is the most thoughtful chap - he not only made a card from himself but also 'helped' Flynn and Skye make one.
I have been giving a great deal of thought lately to women so desperate to experience the wonder of becoming a mother and to be allowed the honour and experience of unconditional love towards a baby of their own. I too would like to pay tribute today, to an amazing lady and who was also Skye’s Paediatric Oncology Consultant, Dr Sheila Lane, who is the programme director and clinical lead of Oxfordshire’sFuture Fertility Trust.
Did you know that ten young people under the age of 25 are diagnosed with cancer every day. Eight will be cured; one of these eight will become infertile as a result of their treatment and will not be able to have their own children. Being told that the treatment required to eradicate their cancer could cause infertility, can be overwhelming and I can only imagine the sadness that news like that can bring to one’s heart.
The Future Fertility Trust, was set up by a team of doctors, researchers, and tissue bank specialists, who offer a comprehensive ovarian and testicular tissue cryopreservation service for the young. They see and advise patients from the earliest point of diagnosis for a wide range of conditions, and give advice on appropriate fertility preservation options before, during and after chemotherapy and radiotherapy treatment.
They offer hope, and THAT, is a wonderful gift. If you want to learn more about their fascinating and quite wonderful work, please follow this link: http://www.futurefertilitytrustuk.org
Here's to HOPE this Mother's Day xxx
I wanted to ask your advice? If you knew that a child in a secondary school had been handed back his homework with the teacher's following remarks written on the work, how would you feel / react?
"This is the kind of work I would expect from a retard in a wheelchair."
I am not exaggerating when I say I have thought about this shocking and seriously ignorant comment every day since.
Yesterday, I was lucky enough to be invited to spend time at Helen House Hospice and today I have been listening to some incredible stories on Jack FM from exceptionally brave children and parents telling of their amazing experience at Helen & Douglas House. I was moved to tears, particularly by hearing Kathy talk about her wonderful wheelchair bound son Josiah. Skye too was wheelchair bound but as many of you will know, not for one second was he treated as 'less of a person'. It was listening to these stories today that has precipitated me writing this post.
We have had some appalling remarks made to us about Skye since his death on our brain tumour awareness You Tube videos, such as: "What did he die of, the fat face disease?" and "He is better off dead with such an ugly fat face." These comments are malicious and I genuinely pity the people who have nothing better to do than to write them. As a family, we chose to put ourselves in the public eye in order to try and guide and educate even a few people about the challenges facing children diagnosed with cancer. We accept not everyone will be supportive but it feels right to help where we can. These comments, I can shrug off.
Am I over reacting to this teacher's written words, or do others find this comment wholly unacceptable? I would like to approach the Head to discuss the matter but don't want to be considered a 'trouble maker'.
We strive to be compassionate and have the urge to help the broken hearted. Why is it then, that so many comments feel more like a punch in the stomach rather than their intended source of comfort?
I used to be every bit the person I now try to avoid, desperately trying to find a ‘positive’ in any given situation. Society is not equipped to know what to do and say in times of utter despair and grief. For the most part we hide it and take the ‘stiff upper lip’ approach. Why?
Grief can flummox the most eloquent – even having lost a child myself, I still sometimes struggle to know what to say to other parents who are facing life without their child. Don’t let your own personal discomfort keep you at arms length. It is so incredibly isolating and while we may need to be withdrawn and physically alone, the only thing worse than suffering, is suffering without understanding or acknowledgement. Don’t give up on us however hard we make it. We do need your love and support.
A beautiful boy we had the pleasure of getting to know while we were on the ward with Skye, died last week. Even now, I realise that there are simply so few words or actions that can offer comfort. My gift to his family is sharing the following advice for others who they may know, so that they may feel surrounded by love and not to feel even more pain by unintended but hurtful comments.
1. Don’t’ say I CAN’T IMAGINE WHAT YOU ARE GOING THOUGH – Try!!!! Real empathy is the best thing you can offer someone who is hurting because when you really empathise, you are much more likely to say the right thing!
TRY: Keeping empathy in your heart and mind at all times. It is the key to everything that might come out of your mouth!
2. Don’t ever say AT LEAST or BE THANKFUL. "At least he is not suffering any more... at least you have another child." Before you tell a grieving parent to be grateful, ask yourself which of your children you could live without?
TRY INSTEAD: "I miss him too, I remember when…."
3. Don’t say IT WILL GET BETTER IN TIME. Don’t assume we are grieving for our own loss. The child's loss is the greatest and no amount of time will give them the life they should have had back.
TRY: "What do you need most TODAY?" "How are you doing TODAY?"
4. Don’t be SCARED OF SEEING US UPSET. By mentioning their name, you are not reminding us they died, we did not forget! We desperately and fiercely want them to continue to have an effect on those who knew them, and that they always have a place in everyone’s heart and mind just as the living do – is that too much to ask?!
TRY: Sharing a memory you hold dear. Not just once but for years to come. We can’t make new ones like you can, but you can bet when you share one of your child, it will trigger a memory of our own. Be one step ahead of us and be the first to share your own memory of our child.
5. Don’t force us to MOVE ON. You may think willing us or telling us it is time to do this will somehow make that happen. Although this may make you feel better to see us moving on, just as a mother of a 2-3month old child, after all the attention and support has subsided and they are left with the reality of daily life, we are acutely aware that life for others around us has of course moved on, but comments like that help no one other than the person saying them. If you think no one says this, I can’t tell you the number of parents I know, that have heard those very words. This is the surest way of making the person you are wanting to help, feel like you have twisted a knife in their already broken heart and you are likely to lose all faith they had in you forever. Never, never say it! Ever! We have lost the most precious person in our entire lives. We have already had to ‘let go’ of someone we would have given our own lives to keep, so the only thing we have left are their memories and our endless love for them. Please don’t ask us to move on and let that go too.
TRY: "The love you have for your child now, will be as strong forever. I would like to be here for you every breath you have to take separated from your child, if you will let me?"
6. Don’t turn New Year wishes into POSITIVE NEW BEGINNINGS. This time of year is already super tough but to receive positive sentiments for the new year such as “We hope 2017 will be a much happier one”. It is just cruel.
TRY: "I am thankful for you and your beautiful child who will stay in my heart throughout 2017 and the years after. Wishing you much strength for the year ahead. You are loved.”
7. Don’t ASSUME PEOPLE SHARE YOUR BELIEFS. By all means share your thoughts on faith if asked, or at the very least, acknowledge that what you are about to say is your own personal belief. The blanket “HE/SHE is in a better place" is only a comfort if you share those beliefs, otherwise it can be interpreted as ‘their child was not best off with them'.
8. YOU NEED TO PULL YOURSELF TOGETHER AND BE THERE FOR YOUR OTHER CHILDREN. If someone you knew had just had major heart surgery, you would be telling that person to take it easy and focus on themselves first. Grief is like having major heart surgery. Don’t make a grieving person feel any worse by suggesting they are neglecting their children because they are grief stricken. They probably feel guilty enough. Encourage us to help ourselves first, so we can then be in a better position to help others we care about.
9. Don’t keep things SUPERFICIAL. It may seem like you are doing us a favour, what we really need is someone who is willing to let us be real and to have someone who isn’t afraid of talking about the tough stuff. Take your lead from them. By all means offer a ‘lighter’ evening if that is what is required but don’t push for that too hard. Real healing comes from some of the heavier conversations.
10. IS THERE ANYTHING I CAN DO? Grief consumes the immediate and controls the mind for future planning. Better to offer specific help.
TRY: “I am going to the supermarket, can I pick up milk, bread?" "Can X come and play this Tuesday morning?" "Do you need help with that project?" "I could do… It would be no bother."
11. THEY WOULDN'T WANT YOU TO BE SAD. When you love deeply, you grieve deeply. We need to be sad; we can’t not be for someone else’s sake. Using our dead children to put even more pressure on us, is a platitude which doesn’t work.
12. EVERYTHING HAPPENS FOR A REASON. I can’t believe I am even having to add this onto the list! No it doesn’t! Not everything in life is logical. Children should NEVER die before their parents.
TRY "Your child’s death is a tragic, terrible loss to the world, it breaks my heart, I am sorry, there are no words!"
Next time you speak to someone who is going through utter hell, instead of trying to make yourself feel better by showering them with positivity, stop, put yourself in their shoes, acknowledge how hard things are and NEVER forget their beautiful child. You are much more likely to provide that tiny fraction of comfort you were hoping for.
Thank you to Jeannie Page (photo), Christy Heitger-Ewing and mums from Kamran's ward who have travelled the same road and been subject to similar comments. Your help with this has been invaluable.
Christmas means many things to many people these days! New, well-marketed traditions are here to stay whether we want them to or not, but it is up to us as individuals to continue to live our lives how we want to, true to our personal life values rather than feeling pressured into keeping up with the Jones’.
One of the most wonderful aspects of Christmas, is that it‘s often a time when families make the effort to come together. Needless to say, when someone you love is then absent, for whatever reason, the stark reality hits you during this time of ‘togetherness’ like a knife through the heart.
It feels like there is no escape for us, music in supermarkets pound out “All I want for Christmas is You”, School Nativity plays are cast with one less Shepherd, the empty stocking lies in a box, never again to be hung out for Father Christmas. It has, for us, now become a time of year, where we have to pull out all the stops to create a magical and hopeful environment for Jesse and Flynn, but that does mean supressing our building emotions of desperation and loss. I can only imagine that this must be the same for a great number of other people who are not ‘living the dream’ at Christmas time and our hearts go out to you. I recently saw two Christmas T-shirts in shop windows, one which said “I Want it All”, and the other “Do Nothing this Christmas”. These are certainly not the values we wish Jesse and Flynn to grow up with / nor the ones Skye held.
As a family, we have our goals, and we cannot lose focus until they are reached, but we would never want our friends and supporters to feel we were pressurising anyone into our cause. I say this on the back of a school ground conversation I had with a mum the other week where she was exasperated by "yet another charity day", and the hassle of having to find a Children in Need outfit and to donate £1.
I don’t suppose I was quite the sympathetic ear she had hoped for, as I have always felt it incredibly important for schools to promote a ‘caring for others’ attitude that we wish our own children to adopt, and I for one feel glad when a fun event can be coupled with doing some practical good! The money for bringing about change comes from these very type of events. The amount of luxury purchases made at Christmas just highlights how we can all find a bit of spare change if we are motivated to do so.
What Andrew and I have discovered over the past two years is that fundraising is a tough gig! It takes an inordinate amount of energy, courage and bloody mindedness to keep things afloat and we would like to take this opportunity to thank each and everyone one of you who have stood by us in one way or another most sincerely.
We very much hope that passionately sharing our new found knowledge, of an area which has been neglected for so long, sharing Skye’s humour, good natured spirit, and will to help other children, is what drives you to continue to walk with us, especially at this difficult time.
Please don't ever stop thinking and talking about Skye, we love seeing his name included in Christmas cards. It means so much!
We would like to share with you a video which we have held back until now as we were worried some may find it distasteful but it was a very true to life snapshot of how we all tried so hard as a family to keep silliness in our hearts and minds in order to enable Skye to giggle and laugh just as a child should do. We hope it makes you laugh too this Christmas….
My heart goes out this time of year, to all the mums having to hand over their precious children into the care of ‘big school’. We have all summer together, willing the date to get nearer, to be able to field some of the “why” questions, desperate for more time on our hands without having to be the soul provider of entertainment, knowing they will love making new friendships, devour new information and begin their journey of independence and growth. Why then is it so incredibly hard when that day finally arrives?
Of course there are the obvious worries about how our children will cope; Will they remember where the toilets are in time? Will they have a happy day and meet a nice friend? Will they like the cooked dinner and eat something? Will they be brave enough to speak up if they need something? Add to that a great big dollop of selfish feelings about how we feel. Oh come on, its true. I hate this defining moment when you know your child is growing independent and will ultimately leave you to discover a life for themselves and of course that is what I will encourage every step of the way but it doesn’t make it less hard.
I feel I owe Jesse a lot. What he has had to witness and cope with for over half his life now has not been the carefree, innocent, happy and exciting world I wanted to create for him. One day he was happily playing with his big brother in the garden, the next, a life separated from us all having to live with Granny much of the time and hospital visits ending with his inevitable howls echoing the corridors when it was time for him to leave. Jesse has been deprived the social life he craves. He is desperate to make friends with children his own age and I have made it my number one priority to make sure he has my full support.
I have been very proud of myself and tried to blend in with the school parents, performing my best 'jolly' persona to date. "Smile", I tell myself every few steps.
Walking to school each day with Jesse (who is still somewhat reluctant), I get flashes of Skye constantly. Memories of his excited face when we bought his new school shoes and writing his name in his brand new book bag all come flooding back. Seeing the older children running to school with their older siblings, knowing that Skye should be with us, holding Jesse’s hand or bumping him into hedges and playing tag on the way in. My heart is so heavy (smile). Jesse feels it too and while I believe he enjoys making new friends and comes running out at the end of the day with a big grin on his face, each morning however he gets very worked up at the thought of leaving us for a whole day. He said he wished Skye could be at the school with him. Skye, (with my help) has been writing Jesse little notes and leaving them in Jesse's shorts pocket for him to read at school to make him feel less alone. Please tell me it gets easier?!
To finish, I would love to share this snap of Skye on his first day at school where we visited his class just for a short time. He boldly stuck up his hand, insisted I march him to the front of the class where he wanted to do demonstrate the purpose of his school swimming hat. “It goes on like this,” he said “and it keeps your hair from getting wet in the pool, well, it would if you had any which I don’t, ha, ha.” I will never forget it – what an amazing attitude.
Jesse has already seemed to have captured the hearts of many of the girls in the class so he must have picked up a few tricks from his big bro!!
It’s Flynn’s Birthday!
One whole year old.
It has been a happy day today.
Awoken by Jesse (and Skye) telling Flynn the significance of the day and he just grinned as he always does. Skye still features heavily in Jesse’s make believe world and he is often telling us that Skye has hopped down for a play. I don’t worry about this as Jesse is an incredibly sociable chap and had no problem making live friends too.
Andrew and I always find ‘special days’ some of the hardest to cope with but I am getting better at hiding what I feel for ‘the greater good’ and of course determined to make each day as good as I possibly can for J and F.
Cramming the day with activities is always good way to occupy one’s mind and musical statues seemed a good way to start. Skye won of course but apparently Jesse has picked him to be on his team so they both needed a prize ;-)
For anyone wanting to know what this is… well it is the aftermath of a cake smash! It all came about because I was telling Jesse how Granny had made me a telephone cake when I was young and I had picked up the receiver to try to make a call. He thought this was so funny and said he thought Flynn would definitely try to pick up his ‘ball’ cake. Not wanting to miss a photo opportunity, we nipped to buy a piece of plexiglass, placed the cake and Flynn on it then snapped away. You really must try it – so much fun!
Why the plexiglass you may ask? Well not only is it supposed to contain the mess, (it didn’t,) but gives a beautiful reflection so little grubby feet and crums of cake are highlighted in the glass which makes for a stunning photo. Flynn was a little confused at first weather to tuck in or throw it but did repeatedly say the word “bawll” so certainly knew what it was supposed to be. He is obsessed with all things spherical and had a good day surrounded by balls of all shapes and sizes. I had fun too, I feel very lucky to have such engaging little people to share my time with. Now all I have to tackle is Jesse’s 5th Birthday in a couple of weeks, which he has announced he would like themed on ‘minitaure’!! Well at least the cake should be easy!!
Last but not least, will be celebrating the birth of our dear Skye, who would have been eight years old on 5th November. This year we have decided to host a Firewalk Event and celebrate Bonfire Night in a rather special way. To find out how you can join in or sponsor us, check out the Firewalk page of the website.
Sweet Birthday Dreams Ball Boy!
Three years ago today my little boy was sick in the morning for the first time. For the rest of the day he was right as rain. I re-live that day over and over again, thinking I should have known somehow that there was something very wrong.
Skye was diagnosed with acid reflux and was treated for this mis-diagnosis for two weeks. It was only due to seeking another GP's opinion and the fact that we were becoming worried that he wasn't improving, we insisted upon seeing a specialist paediatric consultant at our local hospital. Skye was diagnose fairly quickly but I have heard time and time again that children were not being diagnosed until they arrived at hospital with very sever symptoms at A&E. He did not suffer from headaches and I remember telling him to "look ill" while we were waiting in the doctors surgery as I was worried we wouldn't be taken seriously.
Brain Tumours are the leading cause of cancer deaths in children, and the UK is slower than other countries at spotting the signs. We need to change this and by providing practical resources to help parents and doctors I hope this will go some way to save and improve lives. I am really not intending to scaremonger, just to act as a reference and to inform parents and professionals what to look out for as it has been understandably playing on my mind today. As you can see from the video below just a couple of week before Skye was diagnosed, he was not a child who looked like he had a deadly tumour lurking and growing at tremendous speed.
The irony of the children's nursery rhyme Ring-A-Ring-O-Roses, makes me roll my eyes and shake my head every time I watch it but Jesse loves to watch himself having such innocent fun with his big bro so we thought we would share it with you to enjoy too.
HeadSmart is a campaign which is aimed at educating parents and GP's in the hope that it will will save and improve lives. If you would like to find out more information please visit www.HeadSmart.org.uk (Symptom cards can be requested for GP surgeries and local Schools).
*Persistant / recurrent vomiting
*Balance / co-ordination / walking problems
*Abnormal eye movements
*Behaviour change, particularly lethergy
*Fits or seizures (not with a fever)
*Abnormal head position such as wry neck, head tilt or stiff neck
*Persistant / recurrent headache (over 5 years)
*Blurred or double vision (over 5 years)
*Delayed or arrested puberty, slow growth (over 12 years)
If your child has any ONE of these, see your doctor. If TWO or more, ask for an "urgent referral".
With thanks to HEADSMART CAMPAIGN
If you are reading this particular blog post then I have had the courage to publish it rather than just keep it hidden away.
I may just need to rant, but I was so upset today. I am glad in a way because it has made me have a long hard think about why I take comments about “moving on’” and “deserving some happiness” so badly. They are intended to comfort, but for me have the opposite effect.
I am not in the least bit surprised that people who pluck up the courage to talk to someone who has suffered some kind of horrific event get nervous and perhaps come out with well meaning clichés. I would firstly like to personally thank those people for having a go, you hearts are quite obviously in the right place. The problem is, trying to enforce someone to think positively who is still in shock and feeling such raw emotions will sadly only serve to direct their rage at you or themselves (I am the latter).
Today had been a good day. When I say good, I should clarify what this feels like. Have you ever skipped a meal, and felt so hungry that although you can still function, conscious or unconscious, there is something nagging away at you constantly? It distracts you from what you want and need to be doing. A feeling that makes you edgy, with a short fuse and actually possibly even crazy until you have fed the hunger and returned to ‘normal’. The problem with grief is that there is no snack, no meal great enough to calm the heart and the mind so it is there, always, a constant feeling you have to learn to function with as best you can, but always lurking even during ‘good’ times.
I felt joy when I took baby Flynn and Jesse for a walk to some local woods. It was a simple and peaceful time with nature. Jesse is such good company, as Skye was, and we chatted much of the way. I encountered an overwhelming feeling of wanting to give him the life I had dreamed of for Skye and had a rush of feeling brave enough to take him to watch Daddy umpire a cricket match at school later in the day, remembering how much fun Skye had had, as a four year old watching the big boys and serving the half time orange slices.
After a Charity appointment I had to keep, sun shining, I joined Jesse pitch side and started throwing him some overs. It wasn’t long before I got ditched by Jesse, in favour of the ‘big boys’ who were obviously more cool to practice with. Flynn and I sat playing, minding our own business when I was joined by some other spectators. The conversation should remain private but although I felt I had had a very constructive day for the family and for the Charity, I must have ‘dropped the ball’ at some stage during the conversation because the phrase “you really deserve some happiness” and “one mustn’t live in the past” were said. I usually attract these comments more if people sense my sadness and respond by trying cheer me up I suppose, so in public, I try to sound cheerful as best I can to avoid these kind of comments.
I used to be a ‘fixer’ too, a glass half full person, and I would love to still think like that but I have been changed. When someone says to me “it is time to move on” or “one can’t dwell on the past”, I think the only person actually benefitting, is the person saying it because it makes them feel better, willing to see you happy again. It is very natural to want to help ‘fix’ someone who is in pain but this is NOT the way to do it. It takes as long as it takes to heal and maybe I never will. How about this for a late night analogy - allowing a fragile egg to stay safe, warm and away from danger so it can hatch and a chick emerge, able to walk by itself is surely much better for it than rolling the egg down a hill because it will get from a. to b. faster but most likely crack on the way?
Back to the Cricket - as you can imagine, I smiled, didn’t reply and politely made my excuses to leave. I took three wrong turns on the way home and burst into floods of tears when I made it back to the sanctuary of our home.
Of course, I know I am over sensitive and I project what I think others may think of me far, far too much, but I take these comments as an indication that I am failing to do what I ‘should’ be doing. I really am trying to be a better person and I disagree with the saying “put the past behind you” because the past is what shapes the future good and bad. Every day I fight internal feelings of such hopeless loss and pointlessness of living but actions speak volumes too. I am trying so very hard to bring about positive change with our Charity and it takes a massive amount of time, energy and effort to rally supporters to help with fundraising events and encourage people to engage with Blue Skye Thinking. I am not sitting at home, withdrawn and cut off from society however appealing that is. I am fragile however, and have every right to be, because I defy anyone who could watch their own child die in their arms cope any better than us. Let us be sad when we need to be sad –please. Support us but don’t try to ‘fix’ us.
We all know the saying ‘one gets what they deserve’. Of course no one would ever suggest that Skye ‘got what he deserves’ but saying to us we “deserve some happiness” always makes me feel upset, guilty and angry. I have come to the conclusion that actually no one "deserves" anything, good or bad. We can work hard and strive to achieve goals or adopt a more passive approach in life, neither being right or wrong. I still believe in being pro active, but sometimes life events unfold that are out of our control and are certainly not a case of whether we deserve it of not. What do you think?
Perhaps in future, if you find yourself wanting to say "you deserve...." to anyone who is grieving for a loved one through death or even for the end of a marriage, try replacing it with “I would dearly like you to be able to find space for some happiness in your heart”.
There is a video with this blog post - view by going into your browser.
We can't thank those of you who helped at Truck Festival this weekend enough! Your helpfulness, professionalism and dedication made all the difference. Hope you like this video of the weekend...
***SOS*** I still have excess frozen stock which I need to shift at amazing prices! Please can anyone contact local clubs (Rugby / Footie clubs, groups or for your own use?!) If we can sell it, we raise our profit by alomst £1,000.
4 x boxes (20) Chicken, Bacon, Leek Proper Cornish Pasties £25
6 x boxes (20) Cheese and Onion Proper Cornish Pasties £25
25 x boxes (40) Sausage Rolls £25 per box (62p each RRP £2)
18 x boxes (48) Frozen Croissants £15 (31p each RRP £1) (£15 is less than normal wholesale price) I Could break into bags of 24 for £7.50 for any families.
3 x Ketchup sachets (200) £10 (wholesale price)
1 x Brown sachets (200) £10 (wholesale price)
PLEASE TRY TO CONTACT WHOEVER YOU CAN OR MY FAMILY WILL BE LIVING ON THIS FOR THE NEXT 10 YEARS!!!
Today Blue Skye Thinking is launching a very special ‘Aim Skye High’ appeal to ensure we continue Skye’s legacy and help more children with cancer across the UK.
Through our work supporting research and treatment of childhood brain tumours, we want to ensure that all children diagnosed, will have a better chance of survival and a better quality of life post-treatment.
Our inspiration is Skye, a boy who refused to let the biggest cancer killer of children curb an incredible energy and imagination. His ambition to shoot for the moon drives us, and the groundbreaking research we're helping fund. Together we're bringing fresh thinking and great inventiveness to new and better treatments of childhood brain tumours and we need you, to support us in this mission.
This mindset is at the heart of our fundraising. It started with Loom to the Moon and it’s continuing with Aim Skye High, our new fundraising initiative for 2016.
Our target is £50,000. It sounds conventional enough, but our approach is
anything but. We're asking people to each think of a new and very different way to raise money, be it a few pounds or very many.
We want people to Aim Skye High: your fundraising ideas should be a little crazy, a touch unconventional, and really original. It could be something that no one’s ever thought of or done before. Or it could be a new twist on an old favorite: hold a Garden Party inside or shave off half a beard. All we ask is that you add your creativity and inspiration.
Why? Because it will demonstrate the power of blue sky thinking; because the more out of the box it is, the more talked about it will be; and because it’s exactly what Skye would have done.
The campaign will run until April 2017. We’re hoping that more and more people find more and more inventive ways to raise money as the year progresses. And that the result is a snowball of originality, creativity and achievement, that benefits those who take part as much as our charity.
Where will your money go?
Relapsed brain tumours carry the most devastating prognosis – fewer than 10% of children who relapse following current therapies will survive. We would like to fund a three year Post Doctoral research position at the renowned Northern Institute for Cancer Research, specialising in pioneering work on the biology of relapsed brain tumours in order to develop new targeted treatments. Having already raised £150k towards this new research project, we are already three quarters of the way to success, but need everyone’s help for the final push to raise the last £50k.
How to Help?
There are lots of ways you can support our appeal.
- Donate Directly
Text UPUP52 £3 to 70070
Send Cheque payable to Blue Skye Thinking
- Plan your own 'Skye High' Fundraising Event
Use free Fundraising Pack
Tell us so we can cover your story in the local paper
Help us with our in house fundraising events. Your skills are invaluable to us. From serving food at festivals to managing Instagram. WE need you!
For more details visit Volunteer for us