THE ONLY WEALTH WE HAVE IS OUR RELATIONSHIPS

Oscar’s funeral was exactly 4 years ago on Sunday 13th May – it is also the day we attempt to take 65 children and their families up Mount Snowdon for the charity. I will never understand that Oscar is dead. And I will be forever grateful for the people we have around us supporting us. It is humbling that so many people, and poignantly so many kids, want to be there for us, for Oscar and for other children with brain tumours. In a world where sometimes we lose hope, this weekend restores all my faith in human compassion and empathy and in the saying “The smallest gestures can produce results that will change the world”.

Four years and it still feels like only this morning I was cuddling my boy. I can still physically feel what it feels like to hold him – I know the shape of his strong leg muscles, what his skin feels like on his arms, the touch on my cheek when he would give me one of his rare “butterfly kisses” and it’s a blessing that I can still feel all this. And it is probably incomprehensible for others, but it is true and real for me. And it is all I have left along with memories.

It’s sometimes a strange way that we try to understand life and death; we give the things that happen to us meaning or at least we try to. We come up short, though, when really bad things happen. There is no justification for your child getting a brain tumour and dying. We didn’t need to learn to appreciate our children and our family – they always came first for us, so why? Oscar was such a lovely, kind, funny and strong boy and he certainly did nothing to warrant having to go through so much pain, so why?

Maybe we just don’t have to understand and give it meaning and all we can do is accept. Life is really rather short for most of us and all we can do is try and make it good. I don’t think any of the things we have around us matter much. I know for some it does and I will never understand these people’s way of thinking, but peace be with them; if they are happy and not hurting anyone who am I to judge if the latest big car or tv makes a difference in their life. To me, though, the only real pain I am and will ever feel is missing the people I love and so, the only real joy I will ever feel is from the people I am lucky enough to surround myself with.

So yes, I cuddle my children even more, I memorise the looks on their faces in all sorts of situations and I teach them to be kind, loyal and loving so they, too, will know the joy of great relationships. It’s not just partners that makes us feel happy inside – it’s friends and family, too. I have lots of people around me that when I think of them I can feel that joy in my tummy and laugh out loud about some antics from ages ago still.

And I think of Oscar one day when we walked in to school during his period of treatment and he turned around to me by the car and smiled that biggest smile of his and his whole body did a little jump as he told me he couldn’t wait to go in and see his friends because they made him so happy inside and he asked me if that was odd. Odd Oscar? It is blooming fantastic that you were so lucky to have such great friends and cool enough to know it.

It is also only recently that Oscar’s friends mentioned that they felt we needed somewhere in our home village, preferably the school where he was so happy, whereby he would be forever remembered. Oscar was always someone who was going to inspire people. His tennis coach mentioned at his funeral that Oscar taught him more about life than he could ever teach him about tennis. And he was right; I have never even once known Oscar to give up on anything and whenever I feel myself falter or hesitate a little I think of him and I think; “Because of you I won’t give up!” – what a legacy to have.

We didn’t make it to the top of Mount Snowdon last year due to nature blowing us off the mountain, but in true Oscar style we won’t give up. So 4 years after all your friends and family said their last goodbye to you, we walk with you in our hearts, Oscar Hughes, our beautiful forever 9 year old boy.

 


LOSING MY BREATH AND NEVER QUITE CATCHING IT AGAIN

My grandmother died this Christmas. She had a peaceful death and had just been, as she had always been, surrounded by love from family and friends. This was the “right way” of things – we are born, we live, love, perhaps create more family, live and love some more and then we die. We are missed by the people we leave behind but with a long life behind us this feels the natural order of things for all and the pain is a measure of love and although it overwhelms us and however difficult, it does not destroy us; We know somewhere along the way that this is the way it is supposed to be and that we can bear this pain.

The pain I feel daily is getting harder to bear for me. It is affecting my body and my mind. I have only just accepted this. I have been playing with the idea of having reflexology for months now but I know from before how powerful it can be for me to let go of my shield and so I kept putting it off.

Over the past year I have had to stay a little stronger than usual – Ian has been seriously ill to the point where I was probably going to lose him. And it wasn’t just me that was going to lose him, it was the children; they have already lost so much – their carefree childhood, their brother and undeniably a bit of themselves and parts of their mother and father. There is no pretending we are the same as we were before. Ian and I have both become a little more hot tempered – my theory is that it comes from trying so hard to be sane and keep control that when things go wrong the ripple effects feels like our world is falling apart again and thus we react to this, taking it out on the mundane everyday life. How ridiculous; getting cross over a bit of clothes not put away, a tit for tat over who cleans up more, who looks after the house, the kids etc etc. I mean, we should know better, right? But fact is the reaction to some of these ridiculously irrelevant things are bigger than need be because our energy levels are low – our balance is so easily tipped as we walk this thin line over a valley of emotions. We don’t argue really, we just point out frustrations and then move on, but we do it angrily. And it is confusing to others that we can get so angry and yet show no emotion afterwards, but it’s because it’s just an outlet for a few moments about something that we actually have no interest in, the outlet is the important therapy for us. As you can imagine we are great fun to be around!

Back to my reflexology; as expected after a year of fighting for Ian and watching Ian fighting for life and for the pleasure of staying with us, my body is shot. I hardly made it on the couch before tears started streaming out. My lovely reflexologist only had to say a few kind words to me and there I was – therapy and foot massage in one go! I don’t really cry with friends and I don’t talk about Oscar in any other way than in connection with the charity or through fond memories so this was a much needed release.

To be fair I have had to shield up over the past year to get through and I made a silent agreement with myself & Oscar when Ian went in for his major operation that it was ok if I concentrated a bit on Ian and the boys and maybe pushed Oscar to the back of my mind for a bit – this is probably also why I haven’t written a blog for a long time. Writing about how I still miss Oscar and the effect on my life when my life is also fully consumed with trying to be there for Ian and the boys through more devastation has just been impossible. I find that I am not superwoman……you may laugh at this but I kind of thought I was.

I thought I was rocking this doing the charity, looking after my husband and kids, honouring Oscar, working –I am really not rocking much these days. And I am constantly feeling guilty; I mean we all know that we have to look after ourselves to be able to look after others, but who in their right mind wouldn’t feel guilty doing that whilst watching someone they love struggle to just walk up the stairs? You kind of don’t go “But I need….”  And yet I have started that, so now I get to feel guilty for doing stuff for myself and frustrated when I can’t and it’s all me – Ian doesn’t even say a word. In fact he thinks I should go skiing, running and do stuff for myself.  And I will, it is part kind of a woman thing and part born out of my circumstances, so I just have to work through that – it’s just that circumstances do seem to keep hitting me.

Well, I am starting with taking Ian away to see the Northern Lights – something he & I have always dreamed of. And I get to have time alone with him, something I crave. The boys get to spend time with their grandparents which they love so we are all good on that one. After that, I plan to sign up to do Vasaloppet cross country skiing 90km in 2019 – so I have to look after my body and mind.

I imagine Oscar watching me and all I really want is for him and his brothers to be proud and at peace with who I am and to know that they always have been and always will be safe & loved with me and their dad – that I know, I can only deliver if I and both of us look after ourselves.


IF LOVE COULD HAVE SAVED YOU, YOU WOULD HAVE LIVED FOREVER

What I want today on Oscar's 13th birthday is to sit and cry all day. But I can't - I have 3 other children, of which the youngest looks at me with such innocent confusion at my tears as we sit and cuddle up, that I know I have to stop. 

It is true that cliché you read on "inspirational quotes"; Child loss is not an event, it is an indescribable journey of survival. And at the moment I am just about surviving. The memories which on other days bring me such joy is currently only reminding me of what is no longer possible, of all the dreams lost, of all the things Oscar should have experienced that he never will. Things we all take for granted; becoming a teen, secondary school, falling in love, the first dance, walking hand in hand with a loved one, the first drunken night, the first kiss, learning to drive...the list goes on.

I do love celebrating Oscar, and I have now forced myself to bake a cake with Milo and Lucas for him but this day is becoming harder, not easier. Ian and I didn't sleep all night, Seb woke up at 3.30am and couldn't sleep for hours. We miss Oscar every day but today we are reminded even more of the future that was taken from him. In the last year before he died Oscar swapped between wanting to be a footballer, a tennis player, a singer and a cyclist and there is not a doubt in my mind that he could have become whatever he set his mind to - all the memories in the world can't make up for us knowing he had that taken away from him


HERE WE GO AGAIN

I find myself a little numb at the moment. This is strange and I know this. I think it is my survival mode – I put the emotions in compartments in my brain.

Today I am once again sat waiting at a hospital whilst someone I love is fighting for his life. The doctors very kindly for 2 days have kept asking myself and Ian if we are ok, have we got any questions, would we like a tour of ICU so we don’t get a surprise there; We are as ok as we can be, no more questions as our lists have already been ticked off and no we don’t really need a tour of the ICU as we know it very well….too well.

It is the first day since Oscar died where I must not allow myself to think too much about him. The compartments gets muddled up and I lose focus. Surely no one loses both their son and husband to cancer this cruelly? No child loses their dad and their brother like that? And so we are back to my biggest fear; my children, my boys having to live through more cruelty and me having to navigate them through it, but this time without my rock? Lets park this one in the top secret department and lock it up well!

So now I am currently going through the different scenarios that may happen today and in my mind picturing my responses to these – effectively picking out my emotions and reactions from the correct compartments ready to use. There are a few different outcomes available today. In a few hours I will know what kind of tears I will be crying.

So here we go again, I am giving up control to a brilliant medical team that will do everything they can for the love of my life, the most amazing dad to our children and I am hoping my tears will be of relief and joy.


It is what it is...

 

I can’t count how many times I have used the expression ‘it is what it is’.

It is my get out of explaining myself to others; my ‘I don’t want to talk’ expression. I used it when my eldest son had a serious operation after he was born, I used it again when my husband had cancer seven years ago, and I used it time and time again when Oscar got diagnosed, went through treatment, relapsed and died. And now I have to say it again; it is what it is.

My family’s world has been rocked again, and over the next months or year we will close in on ourselves and once more submerge into the land of hospital visits, cancer treatment, insecurity, fear, pain, strength, courage and survival.

You’d think we’ve had enough, but life doesn’t work like that; we see that all over the world when we look at child poverty, famine, war-torn countries with innocent people having their lives destroyed, families suffering through no fault of their own. So we have to have perspective – again – and at least we can look to the medical profession and trust what they can do.

We have to explain to our children that although Oscar died, it doesn’t mean everyone dies of cancer. The difficult part of course for me is that all my silent prayers and all the research and knocking on doctors doors didn’t save Oscar because he had a brain tumour a little too early for paediatric brain tumour research to have caught up with other cancer research.

I have to find some superhuman strength that right now I am not sure exists.  But of course it has to exist, because no one else is going to do this for me. And really, I have the easier of the jobs: I have to look after our family whilst my husband battles an invisible enemy he has not asked to fight but which has decided to fight him and he has to survive so he can stay with us.

I have of course told him that there is no way he is leaving, not now.  And he should know better than to go against my wishes. As tempting as it is to join Oscar, no-one in this family will willingly do so without a fight. Oscar is already in our hearts, our minds and our souls every day and we plan to stay put together as a family.

So back to the juicing, the googling of all things alternative that won’t interfere with the treatment, the shopping for items that are going to make that one little bit of difference in recovery, the meals on wheels from family and friends, the countless phone-calls to the doctors with my latest discovery, the all night messaging with friends to run passed my latest ideas, the smiling to everyone in the playground telling them all: it is what it is.

Marie


Major series North 17

Hope is stronger than fear

It happens in life that we find at some point that we are not the only ones to walk a certain path or go through a certain experience. That is normally a great thing – there is comfort in sharing and feeling part of a group.  One group no one wants to be part of, though, is the ‘parents of children with cancer’ group.  This past month another little boy close to some friends of ours was diagnosed with a brain tumour – the same as Oscar’s – and it devastated me.  This boy has all the best medical experts and support around him and his family to ensure that he will get through this, and even in the relatively short time since our charity launched there is new research underway that will one day change how these tumours are treated. I’m so proud that the work that we’ve done in the last 2.5 years allows us to be part of this ground-breaking research.

This little boy’s diagnosis reminded me of the frustrations I felt when Oscar was ill. I would go for drives at night time when no one else was on the roads and I would use the car to scream in - it is very much out of my comfort zone to scream, but it needed to be done sometimes and it would make things a little easier to manage. Needless to say I always felt a little stupid just in case someone saw me (I don’t think they did, but if so then I am most likely not the only crazy person driving around screaming life’s pain out!).

Now I tend to cry more than scream, but I still use my car as the place where I let my emotions run wild; some days I can chat happily away in my car keeping Oscar up to date on what we’re doing, but inevitably I always end up crying a little. It is still so hard to keep it together every day so I have to have my outlet. I often stop the car somewhere, have a good cry, look at myself in the mirror and tell myself that we’ll be fine. I look into my eyes and will myself not to cry anymore, then I tap my cheeks a bit – sometimes they need slightly harder slapping – to start looking normal again, breathe deeply and centre everything inside me. I have never done yoga or meditation or any of that but I have my own method of focusing and aligning points inside myself. I am a great believer of mind over matter – ironic I know!

While it was not to be for Oscar, the fight against brain tumours continues and the work we do keeps me focused.  Knowing that the funds we have raised so far are being used on research programmes that could one day change how children with brain tumours are treated is a surreal place to be in after such a short time.  Knowing we can provide some kind of hope to other families makes me so proud of what all our supporters and fundraisers have achieved.

This boy’s family needs hope – hope can carry you through the darkest of times.  They found our charity and can see the potential difference the research we aim to fund can make to children like their boy.  They are a strong family and I want to deliver more hope to them.  If only I could deliver it wrapped up and make it carry them through the coming months as their son goes through treatment. I can’t do that, but I can carry on with the work that the charity is doing and continue to raise funds to fight paediatric brain tumours.  This weekend I’ll be joined by 84 other people running through mud and over obstacles in the Major Series North.  We’ve run it previously for Oscar but this time we’re doing it for a little boy and his family who need all our strength, hope and courage.

Marie

 

 

 


Oscar The Scientist

Happy 12th birthday

Tomorrow my beautiful boy would have been 12 years old......I've got a picture in my mind of how I think he would have looked. I can't believe he is not here, next to me & Ian and next to his brothers. The world seems an evil place tonight. Tonight I won't pretend I can manage. I will go to bed and cry all night and there will be no talking of how lucky I was to have him or how wonderful a life he did have in the 9 years he was here. There will just be a black hole of hurt and pain where nothing makes sense and I will allow the question of why to stand. I will ask it again and again knowing I will never get an answer and certainly knowing that there could be no answer justifying ending my beautiful boys life. Tonight is a dark vicious night. And tomorrow we will get up and take his brothers out and we will be together and try and make it a good day, but we will all know that it won't and can't be. It will be one more day without Oscar that he should have enjoyed, one where he should have been excited about family and a birthday party with his friends and his presents. Oscar's last normal birthday was his 7th - On his 8th he was ill and a few days later we got his diagnosis and on his 9th he was going through treatment and unbeknown to us had potentially already relapsed. I can't remember what we did for his 7th birthday, but I sure hope it was good.


Leavers 2016

Leavers 2016

Guest Blog by Phil Martinez, Trustee of OSCAR's PBTC, friend, teacher and football coach.

“I’ve always got the memories while I’m finding out who I’m gonna be. We might be apart but I hope you always know, you’ll be with me. Wherever I go…” they sang, that fabulous little group of ten-and eleven-year-olds, closing the pages on their time at primary school, a time filled with beautiful and fun memories but also marked with great sadness: the death of their friend, Oscar.

But kids, eh? Kids brush these things off, don’t they? They play and laugh and smile and busy themselves with worrying about whether they will get the next big X-Box game for their birthday, or how many sweets they can eat in one go at Hallowe’en, or if their trainers are as cool as the trainers their friends have.

Not so. Oscar is always with them and they showed this time and time again, particularly as their time at primary school drew to an end.

“We have to include Oscar in the Leaver’s Assembly, Mr.M. He is part of our class,” said one girl to me many months ago. So they shared memories, chatted, wrote stuff down. Those of you who knew Oscar, or who have come to know of him from the words on these pages will find little surprise in what they said, but for me it was the depth of feeling that he brought out in them that touched my heart.

“He would always lift your day,” said one.

“He never doubted himself or anyone else,” said another.

“He could make anyone smile.”

“He was an inspiration to me: a boy I always wanted to be like.”

What a legacy Oscar has left these children. Not the tears and the sadness, although that is certainly there, but the friendship and the happiness of days lived in smiles and with enthusiasm.

There were plenty of fun memories too. The time in the infants when he whispered to some of his mates a rude word (don’t worry, it wasn’t that rude) and then they ran round shouting it loudly to each other at playtime. And the time when their Y2 teacher left the school and they had a small surprise party, that Oscar - unable to find a suitable hiding place quickly enough – stuffed himself in a cupboard but fell out ahead of time as she walked in, adding a wry ‘Surprise!” to his impromptu arrival.

“He’s always with us,” one of the children said at the end of the tribute in Leavers’ Assembly. And he has been. His picture is in their Leavers’ Book and they wrote messages in one that was printed for him; his name appeared on the shirts that they signed for each other; each one of them on their last day at school proudly wore a wristband for the charity that bears his name.

And they talked about him, and thought about him, and shed a tear for him. Most importantly of all they keep his memory alive and hold him in their little hearts.

On the last day of their residential, a double rainbow appeared over their accommodation, a sign that Oscar was there with them. They were elated. They stood proudly in front of it for pictures. Then they went in to their rooms and I could hear their upset. They miss him in so many ways.

“A true friend who will never be forgotten,” reads one comment of many similar ones in Oscar’s Leavers’ Book.

“I miss Oscar every day,” says another, indicative of the sentiments written by so many of them.

“I remember chasing you all the time across the field. I still really miss u.”

“Well, where do I start, I used to always look up to you, and you’re still my best friend.”

 

Still my best friend…

 

 

“I hope you get remembered forever and forever.”

In the hearts and minds of these beautiful children, and of so many of us, we all know he will be.


Oscar leavers book 2016

Now life has killed the dream I dreamed

One of Oscar's friends sang a song at a street party recently and, although I do take some pride and strength in not breaking down just anywhere and everywhere, on this occasion I ended up in proper tears.  This is very unusual for me and was in full public view of way too many people for my liking. The song was I Dreamed A Dream from Les Miserables and admittedly I wasn't the only one touched by the song, especially as she sang it so well, but it really got to me that I couldn't stop my feelings showing. This has happened a lot to me in the last few months and it is not something I enjoy.

 

I don't like not being in control of what I let others in on. It baffles me that more than two years after losing Oscar I am struggling more than I was just after he died.  The pain is still physical - I am not sure how to describe it but it just hits me sometimes; a pressure on my chest, a tightening of my throat, and I breathe deep and try to relax though it; the moment passes and with it the pain, but I am always left in a bit of a shocked state realising that it is so forceful- it is such a cliché really, but no less real. Just lately there have been many of these.

 

There are many things we all push ourselves to do; we push for a normal everyday life, we push for the boys to keep being kind and diligent at school and we push for finding joy in all that we do. But there are limits to how much we need to put ourselves through and we’ve hit one of these limits, as we approached the week that Oscar’s school friends finished at the primary school he loved so much.  There was just no point in adding to our pain by seeing all the lovely happy and smiling faces of all his friends so we went away to Italy to try and escape.  So this past fortnight has been a mixture of joy and profound pain for us all. We have gone away with family for the summer, which always makes me feel better – even before Oscar got ill it was always our escape from everyday life.

 

Of course escaping totally is impossible, but we were at least far enough away that we didn’t inflict any pain into what very rightfully should be a happy and exciting time for his friends and their families. I know for a fact how much he would have enjoyed this day and how much he was looking forward to going to secondary school with his friends.  Even back in Year 4, when we all thought he was going to sail though his illness (although looking back at this there was nothing plain sailing or remotely easy about what we were doing but somehow we managed to convince ourselves that we were rocking it), he told me how he couldn’t wait to walk to school with his friends, he couldn’t wait for the day he was going to take the school bus every day and he couldn’t wait to play for his school football team. Those were the three big things Oscar was looking forward to, as any normal 8 year old would.

 

But he didn’t get to do any of that. And we didn’t get to go to his Leavers’ assembly or see him enjoy his last disco, or pick him up from the Year 6 residential.  And as we have done all of this before with Sebastian, we know exactly what we should be doing, and how we should be feeling and it hurts. It hurts to see his friends do all of this, especially as they are all so lovely to us all - you really wouldn’t believe they are only 11 years old the way they show us they still care and miss Oscar in so many different ways. But no amount of trying to be happy for all of them (which we really are trying and most of the time succeeding in) will ever take away the fact that Oscar was stolen from us, Oscar’s chance to have these simple lovely experiences were stolen from him and we have had a lifetime of great experiences and joy with Oscar stolen from us.

 

Life definitely killed the dream I dreamed and it was such a simple dream; truly all I ever wanted was a happy and healthy family.

 


This month I became someone else

I have never been an over-protective mum. I think having four boys I would absolutely run myself to the ground if I had to protect them from every danger the world around them represents but that being said, since Oscar died it is probably natural for me to be a little more cautious when they are ill.

Logic, in my opinion, should still prevail… but now it doesn’t. Milo was behaving differently last week and I acted like a first time overprotective mum – one of those I used to laugh at even when I was a first time mum. It’s just a virus, right? He is lethargic, has had some cold sweats, a little fever here and there and really just wants to be in my arms or sleeping. Apart from when his dad or his brothers are here, then he perks up, at least for a while, and plays and laughs before getting tired again.

So the question I asked myself over and over again - virus, hot weather, teething or nothing – he is a baby after all.  Or do I go to that dark place and consider a brain tumour? There, I said it. Because that is where my mind went – I looked on the HeadSmart card to check what the symptoms for brain tumours are in babies.  I watched him during his sleep to see if I could magically get a sign from him that his head hurts, I checked his eye co-ordination, tested to see if can he still stand. And yes he can stand perfectly fine now and with all the practice from my little tests, he can even stand on his own for a while (something good is coming out of my overprotectiveness!).

I know he is most likely fine and just doing what babies do, but I have become that mum who frightens herself into thinking the worst.  This is not helped by the fact that Milo can not, of course, tell me why he is a little out of sorts. It is not helped by my current terrible mood and the fact that this month missing Oscar is hitting me at full force at the moment either. I cannot get away from the fact that I once went to the doctors thinking my son was ill, never imagining being sat in a little room at a hospital and told by three doctors that my son had a brain tumour and an ambulance was now waiting to take him to a different hospital and that all of our lives would be forever changed…..forever saddened, forever traumatised, forever knowing life could change in an instant and we would be powerless to do something about it then.

Normality in the form of everyday family life with an ill baby has all of the sudden turned me into a crying wreck. I need to acknowledge it and keep moving. Let’s look at the positives; my eldest turned 13 and we made his weekend a wonderful birthday party with family coming from all over. My other son will turn 7 soon and we will celebrate that in style. We will go on holiday, we will watch Euro 2016 and Wimbledon with our friends and cheer at the TV.

I am hugely excited by having met Sarah Hewson, our new patron for the charity, and she has confirmed she will be at our ball in September. We met for lunch and she is one of these people who I was just instantly attracted to. She is a mother of two and understands the fear I go through. She understands the need for me to be part of changing the future of paediatric brain tumour treatments.

As a mother who now worries just that little bit more than I used to, I push through it by the strength the positives in my life bring me. The charity, other mums and dads, my children and my wonderful husband who secretly worries just as much as me!