Family Blog

Loom to the Moon - Great things come from WORKING TOGETHER!

UncategorizedJuly 12, 2015

Skye's Bench

UncategorizedJuly 11, 2015

Despite an emotionally challenging day, we felt so loved and supported by the children, parents and staff at Long Furlong Primary School today. Skye adored his teachers Buzz, Leslie and Faith in the Nursery Class and Jesse has almost completed a full year under their nurturing and watchful eye. I couldn't have wished for a better place for both my boys to have started their school life.

The school held a little ceremony as part of the unveiling of 'Skye's Bench' which will be situated in the nursery garden for future children to use - it is beautiful, complete with an engraving. Many of Skye's nursery friends were there, including two very special girls; Ellie (also known to many of you as Mrs E Hall) and Evie-May. Both were great friends of Skye's and have kept me full of hope over the past year by telling me little things they remember doing with Skye and how much they love and miss him. I cannot begin to tell you how very touched and lucky I am to still have them in my life.

Ellie wrote this song for Skye and gave it to me today. She said I could share it with you:

'Skye, oh Skye, I wish you did not die

Cause you are, my sweetie pie

Cause I love you so much I do

Because you are my Skye'

It was lovely to hear some stories about the cheeky Skye including how he used to hide his shoes so 'girls' would help him put them on! Only a few weeks before he died, he was adamant he wanted to take Jesse and show him where his secret hiding place had been.

The other girl trying out Skye's new bench today was Erin whom I will always fondly remember as the Nativity Donkey! Skye was the only boy trusted to be given a line in the Christmas play, and as the Innkeeper, I do not have to spell out what he was expected to say! It was rather unfortunate therefore, that the donkey sat on his fingers just seconds before his big moment so all that came out of his mouth was "my fingers are broken." Luckily Belle, aka Mary did manage to find a suitable stable.

I wanted to share Skye's end of year report with you as it truly sums up Skye's personality, which didn't waiver even on his last day. Although written when he was quite well, the words hold such a deep meaning and leave my in tears every time I read them.

"Skye is an intelligent boy; he is always meaningfully occupied in nursery, spending time engaged in play with friends, investigating or initiating games. He has a fantastic imagination and his play reflects this. Skye makes the most of every opportunity, often adding his own twists to activities, adapting them to suite his own requirements. It has been a delight to have Skye in nursery; his unique personality has left a mark and his absence will leave a hole." Buzz McKenzie

Skye with his teacher - Buzz McKenzie

Thanks to a sponsored charity walk and scootathon, the school has raised a whopping £3,245.36 for Blue Skye Thinking and we are extremely grateful.

Dear Friends and Family,

UncategorizedJune 19, 2015

I have been overwhelmed by the supportive messages both as private emails, Facebook comments and here on the family blog. I am very conscious of not bombarding subscribers with numerous posts but knowing that I will be unable to write individual replies quickly, I do feel the need however to acknowledge and thank everyone for their support on this occasion. You really have no idea how significant it is to me to feel loved, understood and supported.

The last thing I wanted to do was to shock people and I apologise for this. I really need to convey, that the act of me feeling strong enough at this moment in time to write and share everything I spoke about, is a good thing. The most dangerous times are when I am silent, just with my own dark thoughts, not communicating with anyone, perhaps even outwardly coming across as ‘doing well’ or ‘moving on’. I need to stress that if you really put yourself in my shoes you would not find it so utterly surprising that I would feel so torn with where I feel I should be. I do not want to end my life because it is so bad; in fact, I am fully aware how lucky I am. It is simply a continuation of feeling that it is my purpose to be there to support Skye even if it is a remote chance of being able to do so. I do not feel like my own life is not worth living without him, although incredibly difficult to endure each day, or that I do not value Jesse’s wellbeing as being equally important.

It is very difficult to explain just how close us parents get to seriously ill children. You treasure every second, you spend nearly every waking minute in each other’s company and the practicalities are such, that it is inevitable that any other children become more distant for a time. Jesse used to visit Skye and I as much as possible in hospital, but the fact is, he lived with my mum and it tore me apart that I had to let him go as there was no choice – Skye was the one who needed me. Jesse and I have had to find that super tight bond again, as I hope to develop with Jesse’s new sibling. It is because of Jesse and this baby that I am still here.

By ‘coming clean’ with my inner most thoughts, I think, is a way I can continue to avoid letting myself go back to a place of total isolation with only my own mind to reason with. Grief councillors have not helped me as they have done with others, which is why I have reached out for help. I so want to do the right thing, which most days now seems to be to stay here, but I am scared how easily serious depression can kick in. I am certainly no expert in mental health, but I imagine that it makes absolutely no difference whatsoever to say to someone who is suffering, that they should just see how lucky they are. If only things were that simple! Anyway, I have been sent some wonderful books based on Buddhist mindfulness, which I promise to read. Not because they will give me answers, just to help me be able to live in the present moment and to learn how to live with such extreme and opposing emotions, so thank you for those.

To finish, Andrew commented on how many people made reference to this baby not being a replacement for Skye. Fortunately, it has NEVER crossed our mind that he/she is.

I feel ashamed at the selfish reasons for bringing this new baby into existence; but I am glad and grateful. I so desperately want to be loving and responsible now that it is all happening.

Love to you all

Sally x

Not quite sure how to break this news...

UncategorizedJune 17, 2015

Why is this one of the hardest blog posts to write…

We should feel joy at the news that Jesse will be having a baby brother or sister!

So many people would dearly love to bring a child into the world and being denied doing so, must be so very hard to live with. It is both an incredible honour and responsibility to care for one’s own, or an adopted child, and I hope that through our work with Blue Skye Thinking that we have demonstrated just how important it is, that children other than our own, also need our love and support.

Andrew and I were trying for a third child when Skye was diagnosed, so we had always hoped for another sibling for the boys. Our third child was not ‘meant to be’ back then and actually, that phrase is fuelled with so many meanings and interpretations, that we would ask people to please NOT use it in any comments to us now.

I feel like a terrible person, when I lie in bed at night and cry to myself saying, “but it’s Skye I want back”. I feel no joy, no excitement – nothing! That makes me so very scared. Those who have lost babies or children and gone on to have another, please tell me this is a natural feeling?? One of the reasons why we have decided to keep this news to ourselves for so long, is because we are nervous about the reaction from others, and we are therefore in self-preservation mode.

Skye Benjamin Hall - 1 Day old

It has become apparent since Skye’s death, that there is a need for people around us, to find and express a positive outcome to what has happened. I cannot stress enough that for us, there isn’t! The most comforting words spoken to me in this whole time, were from a child in Skye’s year group at school, when he said “I didn’t want Skye to die, but he did, it is sad.”

“At least you have Jesse.” The words ‘at least’, should never be used when talking to anyone who is grieving, it does not help! We know parents who have lost their only child to cancer and my heart bleeds for them. Jesse or any other child for that matter will ever REPLACE Skye. I know, that for so many who have seen what our family is going through, will see this baby as some wonderful news to come our way and please don’t get us wrong, we do appreciate that we are lucky and are very grateful, but gushing comments of congratulations we fear, is the very opposite of what will help us as a family through such an emotional and difficult time.

Andrew and I told our family a matter of hours ago and felt with only two months to go, a poncho was not going to conceal our secret any longer! For those of you who are good with dates, this means that the baby is due around the time Skye died, so every year, it will be incredibly hard to keep our emotions in check.

I feel glad that I am able to write the words ‘every year’ and I will explain why…

If I am being totally honest with you, I was in such a dark place back in the winter that my absolute plan was to:

Proud Big Brother Skye with Baby Jesse

1.Bring to the public’s attention that having no system in place to collect and share clinical data for children being treated with standard treatments rather than clinical trials, was not only putting their lives at risk, but wholly unacceptable and needed immediate action.

2.Provide Jesse with a sibling

3.Having fulfilled my purpose in life, I would be free to join Skye as my place is by his side, wherever he may be.

I cannot stress enough, that to me I felt Jesse would be better off without a miserable mother holding him back, and if only he had a brother or sister, and of course a loving daddy, then I could be freed. Over the last few months, I have been increasingly confused and felt so torn. I love Jesse so very much, and when he cries and wants me to cuddle him, I feel my decision waiving. He often comes out with questions about why Skye had a lump in his head and why he died. He has also asked if this baby will also have a lump in its head, because he doesn’t want it to leave him. I don’t want him to have to wonder why I left him too.

These erratic feelings leave me with a sense of betrayal to what I had always intended. On holding a dear friend’s new born baby the other day, I felt shocked that I had even thought I would be able to leave a defenceless child alone without its mother, and I so very much hope that mother nature will kick in when we meet. I am scared though, what if it doesn’t?

Jesse James Hall - 1 Week Old, Photo by Sally Hall

I do not care about myself, I just want to do the right thing by all three of my children. I want to be responsible so I do want to find someone to help control my feelings. Writing this down while I am feeling more positive is a way of almost forcing myself not to go back to the way I was feeling in the winter because I would certainly not have shared any of what I have said tonight back then.

It is late, and we have a big day tomorrow, attending the Inquest for a dear child, who died from the side effects of the same treatment protocol Skye received, and right now, they are still what matter most in our lives.

We do hope you will share our news and be measured in your comments to us! We would not be getting through these times without the love and support shown by so many of you and we need it now, more than ever.

Sally Hall 11.45pm Tuesday 16th July (finished at 2am)

Childhood Idols - Danny MacAskill

UncategorizedJune 14, 2015

Skye's #FridaySillySmiler - Silly Faces Family Photoshoot

UncategorizedJune 12, 2015

Independent on Sunday's Happy List

UncategorizedJune 08, 2015

Life After Death

UncategorizedJune 02, 2015

Andrew and I are away in Southbourne for three days, dare I say it – supposedly on holiday. It is a wonderful place where I used to come every year as a child with my brother and cousins and where we have brought Skye and Jesse on a number of occasions.

It is not the first time we have been here since Skye died, but despite all the comments saying the ‘firsts’ are the worst hurdles to overcome, it seems to get harder the more we tackle significant events, rather than easier. It has come as a very depressing realisation to Andrew in particular, that now, even during evenings or holidays, when one can expect to switch off from work, health issues and chores, are now some of the most dreaded times of all, as it becomes all too real once again, that there is a deep sense of loss and sadness that hits you right in the stomach, when at other times you can perhaps be distracted by daily life.

Don’t get me wrong, we are trying, we get up, go to the bakers with Jesse in his PJ’s which he finds exciting, play family board games (sometimes with Skye as the fourth player) and go down to the beach. Jesse has been a bit quiet at times, and you can see he is lonely. He is a child who thrives on social interaction and especially looked up to Skye as his best friend, as well as his brother. He recalls how they were going to share a bedroom when he was three and then a flat together when they were “bigger boys”.

Southbourne 2012

Southbourne 2015

After a four hour cycle ride along the promenade yesterday, we both had lots of time to view ‘life’ as we cycled past families playing volley ball, boys learning to ride their bikes, new mums walking like sleepy zombies with their prams, teenagers chilling out and doing the odd skateboarding stunts to impress passers by and grandparents watching the world from the comfort of their deckchairs under the protection of their beach huts. Some of those people will have to face life with few major problems, most will already have stories of sadness unseen on the outside but for all who remain here – life goes on. This begs the burning question that none of us hold the answer to “what is the point of it all?”

Whilst sitting in the flat in the evening unravelling thousands of metres of loom bands, we are either silent, lost and unable to find the energy to string a sentence together, our brains so overloaded with information and emotion that we are mute OR we turn to very philosophical discussions – verbalising the never ending questions over ‘life after death’….

I have not really communicated my deepest thoughts with friends, family or counsellors, as they all want to tackle how to help me, rather than how I might help Skye. I have heard the phrase “it will get better with time” so often and yes, I can see how the worst, vivid memories of watching helpless as your child draws their last breath might fade and one learns to live with the new life that evolves. I don’t expect anyone to ever “get over” or “move on” after the loss of a child but I can see how it might be possible to learn to get used to living with the feelings of loss. What I think everyone seems to have missed, is the fact that these are selfish feelings affecting me and these are not important. The single, most important fact to me is how Skye is now. I can’t see him, I can’t ask him, I don’t know and no one can tell me.

Eating Out at the Urban Reef

Is he a boy, in heaven being looked after by angels until I die and join him?

Is he a spirit trapped between this world and the next, unable to break away form his family on earth because our bond was so strong, waiting for us to talk to him through a medium? Will he be ‘re-born and live another life, not aware of his old one? Is he now just ‘energy’ fertilising new plants and fuelling the wind and sea, never to be held or seen again but at least, not alone and not suffering? Forever is too long.

I remember one narrative from the Bible, about two women, both claiming they were the mother of a child. After some deliberation, King Solomon called for a sword to be brought before him. He declared that there was only one fair solution: the live son must be split in two, each woman receiving half of the child. Upon hearing this terrible verdict, the boy's true mother cried out, "Oh Lord, give the baby to her, just don't kill him!"

Any mother (or father) would have chosen to sacrifice anything to swap places with their child but of course, none of us can. The single, biggest aspect that haunts me every day is my responsibility to Skye. Neither Andrew, nor I believe for one second that he is “better off” now, whatever one’s beliefs, nature intends for children to reach adulthood. He did not want to die. If there is the smallest of chances that he is still Skye, the boy we all knew on earth, living somewhere else – I should be there with him. If I ever verbalise this, people panic and immediately start finding arguments against why I shouldn’t join him; “you will not get to heaven if you take your own life” – really? So what about the mentally ill who do it – they have a medical illness, surely they are not excluded???

Those who believe in the spiritual world but not necessarily heaven, tell me, if you take your own life, you may have messed with your own natural destiny and may therefore miss the path that would lead you to reconnecting with your child.

For those who believe that once you die, that is it, there would obviously be no point in joining the world of nothingness, as it would never take you on a path of reunion so better to live your life on earth while you have the chance. Maybe this explains why more parents choose to stick around after losing a child rather than joining them?

It is true, that for quite some time after Skye’s death, that I truly felt my place was to be with Skye, not because it would be too hard to live without him, that is selfish, but because Jesse has Andrew and my mum, and Skye has no one. I did not feel that I could offer Jesse a life of happiness, as I so wanted for both of them, and that he would be better off in the long run without me.

I do not currently feel like that, as I realise that Jesse having to come to terms with living without a parent, who has chosen to take their own life and therefore ‘leave’ their child to face life alone is a place no child should ever find themselves in.

So what options does this leave? I am now torn, on a daily basis, with where I should be. I see that Jesse is better off with me around, however rocky the road emotionally, but I have two boys and a responsibility to both. I want to be in both places, however small the chance of actually ever being with Skye again as I knew him.

Andrew was recently diagnosed with cancer himself and my first thought was that if one of us died then at least Skye would have someone with him he knows. This sounds a dreadful thought I know, but I honestly don’t think either of us will find peace until that happens. Andrew even said himself when he told me his diagnosis “well it’s hardly a brain tumour is it?” We both care passionately and wholeheartedly about the Charity’s purpose, but personally, feel so little emotion about our own existence.

As parents, we are responsible for our children until they can fend for themselves and even then of course, we don’t stop looking out for them. After watching Frozen for the hundredth time, Jesse said “Skye is an orphan now like Elsa and Anna as he doesn’t have a mummy and daddy anymore”. Of course I answered his comments bravely and tried to come up with an answer, which was both comforting yet not hypocritical. I have to say though, there is something in what he said which I find mimicking my own private thoughts and is a truly horrid place to be.

Carefree but with dark clouds chasing us

I can honestly say that I envy people with a faith, be it religious, spiritual, or scientific because then you know where you stand. I have never truly quite known what I feel. Skye believed in God because he was fascinated by the stories and because he was indoctrinated by us as the all-powerful parents, feeding his mind with what we wanted him to learn, and my goodness did we pray with all our hearts that he would get better. Whilst I think this is an extremely comforting concept, what makes Christianity right and Buddhism and Islamic beliefs wrong? There are so many intelligent people who are wholeheartedly committed to religion so one starts to think – well maybe there must be some truth in it, but then everyone believes their religion is the right one and of course they are all so contradictory, it destroys faith in any of it. The scientific approach has the least loopholes but even that concept is left with a black hole when you wonder how life all began. In the natural world, there is almost always a point to everything that happens, so why should there not be a point to existence at all?

This post does not have the usual positive slant that we all crave, that something good can come out of a terrible situation. Just a series of questions with no real answers. Of course Andrew and I are grateful that we can make a significant difference to the outcome for children in the future who are faced with Cancer but for us, and most importantly Skye, there is no ‘bright side’, no ‘at least’ and no ‘real hope of true happiness’ ever again. That is just a fact, however hard to deal with. It is what it is. We will always be sad, but we will try to make the most of what we’ve got. I in no way intend to offend anyone with what I have said and respect everyone’s beliefs. We have always been honest and tried to shed a little light on how we are truly feeling at any given time. Please don’t stop walking with us through these grey times because it makes difficult reading, we need you all more than ever.

If you are reading this and are not faced with the questions we are, then be grateful, get out there, be good people, help others and make the most of what you’ve got!

New York Festival Awards 2015

UncategorizedMay 14, 2015

Skye's #FridaySillySmiler - Redback on the Toilet Seat

UncategorizedMay 01, 2015

BLUE SKYE THINKING REACHES £120,000 GOAL TO FUND RESEARCHER

UncategorizedApril 29, 2015

We are very proud to announce that we have reached our target!!!!!!!!!!!!

Advances have been made to identify pathways at a molecular level in the hope that new treatments will eventually ‘do away’ with outdated chemo- and radiotherapies. Now is a crucial time for the funding of new research so that current findings can be converted into frontline treatment. The money raised by Blue Skye Thinking will have a very significant impact on this and we can get that one step closer to unlocking the science behind this devastating disease and one step closer to a cure.

We have informed the Northern Institute for Cancer Research, who work specifically on childhood brain tumours, that the funding is now available and will be working closely with them in the coming weeks to advertise the position. The Research post will start on 1st September. We want supporters to have a personal connection with the researcher so will be following them closely and reporting snippets of their progress on our family blog. Less than one per cent of national cancer research funding goes towards brain tumours, the No. 1 cancer killer in children.

This is just the beginning for us. There is still such a long way to go. In the past four months, three other children that we got to know on the Ward in Oxford have died as a result of brain tumours or as a result of the treatment. It again re-iterates the desperate need for better treatment protocols and the way they are monitored, which bring about better outcomes for the patients and their families. The last year has been such an emotional roller-coaster for our family from Skye’s death last August to now. By reaching this first goal, something positive has emerged from such an awful situation. It is heartening that so many people are now choosing BST as their charity to support and that commercial organisations are also getting on board and raising valuable funds for tangible outcomes and we look forward to working with many more supporters in the future.

We would like to personally thank everyone involved.

Follow this link to watch Wednesday night's BBC Oxford News Broadcast!

Glow in the Park in Memory of Grace

UncategorizedApril 28, 2015

Disney on Ice without Skye

UncategorizedApril 26, 2015

Matching JoJo Maman Bebe Brothers

UncategorizedApril 20, 2015

I received a JoJo Maman Bebe catalogue though the post today who's latest promotion is entitled #JoJoTakeTwo. For those of you who don't know me, you may have gathered from photos posted that I was a huge fan of dressing my boys in the same gear (usually from JoJo). Seeing this multi buy offer with a photo of two brothers with their arms lovingly wrapped round each other was like a knife through the heart.

TIP

My advice to any mothers with boys is to dress them the same as much as possible, especially in public areas. Not only does it have the advantage of being able to quickly scan the play park for one outfit to locate one's own offspring, but if the elder of the two is being somewhat heavy handed with 'play', onlookers, instead of looking alarmed and frantically scanning the mums to find the one responsible for the "terribly rough child", see the outfits and pass the event off with a shrug and a smile saying, "it's alright, they're obviously brothers". Come on mums, you know I'm right!!

Jesse hero worshipped Skye and would never got dressed in the morning before checking what Skye was wearing and then insist upon the same. Although Skye used to roll his eyes, he secretly loved the fact that Jesse wanted to be just like him.

Our family will never be complete again when one of the two bros is missing.

Skye's #FridaySillySmiler Father Gives Birth...

UncategorizedApril 10, 2015

Life is like Chocolate Easter Nests

UncategorizedApril 05, 2015

Have you ever had one of those moments when you stand still and think, “This is not how I hoped life would turn out”? If the answer is yes then you might be interested to hear that I have always considered myself to be like the ‘wobbly man’ from the children’s classic Noddy books, forever being knocked down but just springing back up again, because that is what we do.

Today, I made chocolate nests with my son Jesse. We had carefully bought the ingredients, gone to three shops to get mini eggs (who doesn’t stock enough mini eggs at Easter?) and found a beautiful picture of what our nests were going to look like on Pinterest. Well, I don’t know if you have ever attempted to make the easiest recipe in the world, but our finished article was a gloopy bowl of overcooked chocolate, separated butter and what looked liked an oil slick of syrup floating unappetisingly on the top.

This would have bothered me in the past but now; having experienced true tragedy in life, I can at least shrug this miniscule mishap off as inconsequential, right? WRONG! Trying to deal with the smallest of chores or set backs when you are grieving the loss of your child takes immense effort.

It was a year ago today that Skye and I were leaving our two month stint from the isolation ward in hospital, with a potentially cancer free scan! It was the first time in months I felt I could breath again and my beautiful boy was back home for Easter. This Easter, he is dead and he will be for all the following Easters, forever. I honestly don’t know what matters and what doesn’t any more. Some days I take on the top medics and politicians just seeking the truth and to fight for a better future for children diagnosed with the no.1 cancer killer in children – brain tumours. Other days I just stare into space wondering what on earth we are here for. Most of the time however, I simply feel guilt, for somehow not protecting my first born child from the horrors of cancer, for not being as attentive as I should be to Jesse while focusing on the Charity, not being able to engage with my lovely friends and family but above all, guilt for still being here while Skye is not. I want to swap places with him every day; he should be here, not me.

I am trying, I am, but every day holds emptiness. Jesse and I had fun together making our nests, but in his words “Skye would have liked to do this with us mummy but he can’t now.”

This wobbly man is down for good but will try hard to conceal it better in the future for the sake of those she loves.

p.s. Please don’t wish anyone grieving a “Happy Easter”, a simple “Thinking of you” will do just fine. X