Mother's Day Failure

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Failure, failure, failure

I realise that what I write here may not be an easy read but for my own sanity, I have to have a time when I can be brutally honest. When writing press releases on behalf of the Charity or give presentations, I am very aware that a ‘positive spin’ and inspirational words of wisdom need to accompany any candid comments I make about Skye’s disease and the way we feel. Today I just can’t do it. I feel like a black cloud has enveloped me and is crushing me to nothing. Failure is all I feel.

Mother’s Day, since losing Skye is truly one of the hardest days of the year.  All I can think about is how I failed him as a mother. We are supposed to protect and nurture our children, keep them safe while they are young and give them wisdom and wings to fly into adulthood. I couldn’t do that for him. FAILURE.

I know I have a responsibility to my other wonderful boys. I fight the defeatist thoughts in my head that wonder about the pointlessness of life and how I am just waiting for it all to be over on a daily basis. My boys give me the will to fight. They should have a happy mum who can offer them a way to appreciate the excitement and beauty of the world they live in. Contrary to the very cliche statement you hear after any bereavement, ‘time’ does not make anything easier, it is a conscious choice to carry on living as happy a life as you can and it is one of the hardest things a mother who has lost a child will ever ask of herself. When your child dies after a long, devastating illness, this is not the end of the tough times as many will think and hope for, but the beginning of some of the worse. I know I owe it to Skye not to waste my life because he would have done anything to live his to the full but it is easier said than done! I desperately hope those who know me, and see me with Jesse, Flynn and Beau on a regular basis will think I am living up to my pledges to them and do offer them happiness and love. Today however, I have FAILED.

Mother’s Day, like a birthday feels like some sort of sick joke.  On a day that drives home like a dagger through the heart just how much you are missing your lost child, you are expected to accept ‘happy’ well wishes.  I was so determined to wake up to my cup of tea and breakfast made by J&F with a smile on my face today. Promised myself that this year would be different. They had so clearly gone to a lot of love and care making beautiful blue butterfly and painted teapot cards. I kept it up for as long as I could but the dark cloud descended while I was in the shower and just would not shift. Why could I not hold it together for their sake? I AM A FAILURE.

The trouble is, on days when the world insists you should be feeling happy, it is almost impossible not to over react to that with a feeling of isolation and being misunderstood. All I have managed to achieve today has been a downward cycle of guilt. Guilt about not saving Skye’s life and more guilt about uncontrollably crying in the kid’s ear shot, instead of managing to stop being selfish and think of them. It made the darkness worse knowing I couldn’t protect them from my sadness and ‘snap out of it’. I AM A FAILURE.

Trying to redeem the remainder of the day, I switched my phone off and took Jesse to a bookshop to redeem his World Book Day voucher. Leaving the sanctuary of one’s home to simply buy a book is, in itself a huge ordeal on Mother’s Day because again, the reminders are everywhere and the tension builds again. In an attempt to make up for my behaviour, I treated him to a ‘personalise’ your own Monopoly set, a game he is completely obsessed with at the moment. We had a nice hour and I do hope he remembers that time, as I will try to. The slight problem however was that the game involved printing photos of family and special events. I pride myself in usually managing to look at photos of Skye without welling up and keep it a happy occasion, so that his siblings won’t associate memories of their brother with my sadness. Couldn’t do it today though– more tears from me. FAILURE.

I do not want to EVER celebrate the existence of my life, or for anyone else to while Skye cannot celebrate his. I so wish I could get that message across, am I? I appreciate to some this must sound so very self centred and I am so sorry.  I have no idea why I am writing this down, I just know I need to be back to being a fully functioning mother again very soon and need to get these feelings out of my system in the hope that next year, I can be allowed to ignore these enforced ‘happy’ days and let them slip by quietly for my family’s sake.

I also very much hope that for anyone who knows someone who has recently lost a child or who are going through exceptionally tough battles with childhood cancer at the moment, that being shown true empathy is so much more appreciated than trying to enforce ‘happiness’ into their world. The phrase “you deserve some happiness” has the very opposite effect from the way it is intended. In my mind, no one ‘deserves’ any of what happens, good or bad, it is simply just down to the choices we make or elements of life that we have no control over.

I for one am glad today is almost over!! I am even more grateful that I received the most amazing cuddles from all three of my boys simultaneously and unprompted tonight when they found me (again) with a face full of tears. I love them all so deeply it hurts.

I AM SORRY I FAILED YOU TODAY BOYS.

Thank you for caring and sorry for the outpouring.

Brand a Bus in Oxford - We need your vote

We have the chance to be on the side of an Oxford bus for a year!!!!!

We need your vote (deadline midnight Monday 3rd December)

PLEASE VOTE HERE BEFORE YOU WATCH THE VIDEO (scroll down to the end of the entries)

https://www.oxfordbus.co.uk/competition/competition-gallery/

Countdown for cog sponsors…

It is not too late to sponsor a cog - deadline is 5th January 2019

https://loomstallation.com/

BREAKING NEWS… Children’s author, Nick Sharratt and our Patron, Stephen Mulhern are set to attend the grand opening in February!

It Is Your Birthday Dear Skye, 10 Today!


Skye would want to be remembered for his humour so on the occasion of his 10th Birthday, I wanted to share this precious video of him and Jesse singing 'Happy Birthday' You always wanted to get to double figures sweet boy.

Thank you to all the Firewalkers who were brave enough to take part in Skye’s ‘Birthday Party' last night. Arrow breaking, glass walking and hot coals all in aid of Blue Skye Thinking. What a party….

Not too late to sponsor them:

https://www.justgiving.com/companyteams/dcsfirewalk18

'Sponsor a Cog' for our LOOMSTALLATION at The Oxford Children's Hospital

YES! I want to be part of this - Magical Art Wellbeing project at the Oxford Children's Hospital.

You will recieve: A CERTIFICATE, PHOTO OF YOUR COG, YOUR NAME / LOGO ON OUR VIRTUAL COG BOARD, INVITE TO THE GRAND OPENING! Sponsor as an individual, business or community group.

Extended closing date for sponsorship - 5th January 2019

Click Here  to download a printable form

Click Here to download a printable form

For more information please visit www.loomstallation.com

Emotionally Naked

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It is almost impossible to put into words how Andrew and I feel on days like today. We re-live every hour of the last day of darling Skye's life, from the moment he woke up and said "I am feeling a bit tired today," to him insisting on sending Granny to buy his little brother a pink guitar.

The medical trauma of the day was very hard,  every fibre in our bodies wanting to keep shaking him awake and insisting him stay with us but knowing being the ultimate parent was to stay composed, calm and confident for Skye's sake.

Skye was so aware of everything that was happening to him and it was terrifying to be the people responsible for keeping him from being scared.

Every day is hard but we have learnt to hide how broken we are in order to operate and carry out our duties. On days like today however, I am emotionally naked. I don't want to be the strong, accepting and inspiring face of the Charity, I want to curl up in a ball and remember how it felt to hold Skye's little hand in mine as I sang 'Never play cards with a Cheetah' and think of nothing else.

I am lucky, the day is mine and I can be who I need to be. For Andrew however, he has to find the strength to start the new academic school year, to welcome new teaching staff, to stay in control, to listen intently to other peoples concerns and to the best job he can for the sake of the pupils he is responsible for. I know he will do it because he cares so deeply about all children and his job is his vocation. I admire and love him with all my heart. 

He left this picture by the bed before he left for work today. It is the most exquisite illustration of how we feel and we would like to visit Switzerland to see it sometime.

Art is powerful.

Being a Mother of a Child who Died - on Mother's Day

 "Sadness moves from our skin into our bones. It becomes less visible, but no less who we are."     

Claire McCarthy

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I am increasingly burying the depth of my sorrow to protect relationships of those around me. I want to be honest but am acutely aware life 'is what it is' and there is no point spreading negativity and sorrow wherever one goes. Skye, you remain my darling son and my soul is lost to me but with you, wherever you are.

This Mother's Day, instead of sharing how I feel, I thought I would share the eloquent and honest words of another mum.

https://www.huffingtonpost.com/claire-mccarthy-md/a-child-who-died_b_1511543.html

Thinking of you on your 9th Birthday Skye!

 
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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.

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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.

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Don't Judge the Bereaved Mother - Poem

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.

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BBC NEWS - BREAKTHROUGH IN TREATING CHILDHOOD BRAIN TUMOURS

"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

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Gemma Llargués Sistac working at Northern Institute for Cancer Research

Gemma Llargués Sistac working at Northern Institute for Cancer Research

Read on...

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.

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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

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How Does A Moment Last Forever

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.

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Welcome to the World Baby Beau

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".

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First stop, visiting Skye's grave where the boys enjoyed a 'fidget spinner' hunt and gave Beau a BST babygrow!

First stop, visiting Skye's grave where the boys enjoyed a 'fidget spinner' hunt and gave Beau a BST babygrow!

Oxfordshire Business Awards and BBC One Coverage!

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....

 

Mother's Day

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.

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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

What To Say And What Not To Say To The Grieving Parent

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.

 

Credits

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.