They say the camera never lies but Andrew and I have fought back the tears so many times today. The boys wanted to make toffee apples just like the one Skye enjoyed 15 years ago. A magical evening we treasure, glowing with the warmth from the bonfire and close friends. We miss you dear boy and can’t believe you would be 16 years old today.
In 2021, at the height of the pandemic, Blue Skye Thinking and another parent-led charity called Little Hero partnered with CwCUK to fund a focused research programme into medulloblastoma called INSTINCT MB. This 5-year programme, led by Professor Steve Clifford from Newcastle University Centre for Cancer, aimed to discover more targeted treatments for children, leading to improved survival, less severe long-term side effects and an improved quality of life.
At the time, with lockdown, charity fundraising had been severely impacted and many important research programmes were struggling to get funding. The concern was felt keenly by many in the community, as not only does this delay life-saving research for a particular trial where a lot of preparation and planning has been invested, but it can also lead to specialist researchers being driven to seek alternative work, reducing the outcomes for so many areas of brain tumour research. After a number of discussions, due to the flexibility of our two smaller charities, Blue Skye Thinking and Little Hero were able to provide the first year of funding that allowed the INSTINCT MB programme to launch, with CwCUK in place to fund the subsequent years.
I am really pleased to announce today that researchers funded by Blue Skye Thinking have made their first significant discovery on the aggressive Group 3 variety with an MYC gene expression. This is nearly incurable using current therapies. The team have identified a key dependency in this type of medulloblastoma on a critical metabolic pathway for their growth and development. They have demonstrated that when this pathway is targeted using PHGDH inhibitor drugs in experimental models it can significantly slow tumour growth.
It is hoped that this will be the platform for the development of new therapies to effectively target this high-risk cancer and improve outcomes for one of the biggest causes of childhood cancer deaths.
This could not have been possible without the dedication and support of Blue Skye Thinking's supporters. Thank you so much!
https://www.blueskyethinking.org/blog/watch-bbc-south-today-tonight-at-6pm
It was a great honour to be invited to speak at the Childhood Cancer Conference 2023 last week. The very intense two-day conference, hosted by Children with Cancer UK, was the first held since the pandemic and my goodness, was it packed with passion.
I was happy to play a small part in a mighty conference, to have an opportunity to talk about Skye and some of the research Blue Skye Thinking have co-funded. Sharing the stage with two men I admire deeply – proactive problem solver and fellow bereaved parent John Rainsbury of Little Hero charity and Professor Steve Clifford from Newcastle University – the three of us delved into the issues facing children with high-risk medulloblastomas and how we are striving to address them. We also emphasised the need for collaboration and real-time data sharing if the community want to achieve the great outcomes it so desperately desires.
Among the speakers was Professor Kathy Pritchard-Jones, one of the UK's foremost experts in childhood cancer, who has been a consultant in the field for 20 years and is currently Professor of Paediatric Oncology at UCL and President of the International Society of Paediatric Oncology (SIOP). Another key member of the conference was Professor Pamela Kearns, Director of the University of Birmingham’s Institute of Cancer and Genomic Sciences and Director of the Cancer Research UK Clinical Trials Unit (CRCTU). As Director of CRCTU, she leads the research strategy for one of the UK's largest cancer trials units, delivering a trials portfolio of over 100 multi-centre and international cancer trials for a wide range of cancers, occurring in children, young people and adults. Notably, she is leading the National Children’s Cancer Trials Team responsible for the vast majority of the UK’s clinical trial portfolio for children and young people with cancer. We had a promising discussion about the importance of data sharing and I look forward to having further meetings with her over the coming year.
Professor Pamela Kearns
It was fascinating to hear in more detail from Professor Andrew Beggs, who spoke about the race to find vaccinations for Covid-19 and how a surge in focus on vaccines can have a positive impact on the cancer community if the funding is there. In contrast to this hopeful and groundbreaking talk about personalised medicine, you could have heard a pin drop when Professor Richard Sullivan spoke about the enormous global cancer challenges, particularly in developing countries, and left seismic, yet not insurmountable challenges for us all to help resolve.
It was a pleasure to meet and hear from some of the youthful and keen researchers who I very much hope the industry will work to nurture and support so they can continue the incredible work that current experts are doing. Less palatable conversations surrounding the release of funds from government-pledged investment through the Tessa Jowell Brain Cancer Mission (TJBCM) were aired and I will certainly be following up promises by the impressive Camille Goetz, spokesperson for TJBCM, regarding workshops to support more successful grant applications.
Sharing a table with Wendy Tarplee-Morris, founder of the Little Princess Trust, who, like me, never wanted to be part of this community and would do anything to have her precious daughter back –but has turned a simple idea into a multimillion-pound charitable organisation – was very inspiring and informative.
The highlight, however, has to be listening to and meeting with Ellen Bisci and Ace Manthey who talked so eloquently about their own personal journeys with cancer. Many people imagine a wild party at the end of successful, life-saving treatment but the stark reality for many is not only the threat of relapse, for which there are very limited treatment options and none for brain tumour patients, but also the reduction in ability to go on to have children in adulthood; incontinence; reduction in neurocognitive function; endocrine deficiencies; acute and chronic toxicities; risk of stroke; heart, hearing, sight and liver function issues; and many more to mention. Every individual is affected differently and to varying degrees, but given all that adversity, to stand up and be thankful for what they do have and to hear them publicly thank their families and the support of the community was incredibly heartwarming. Ace even recounted meeting my son Skye, and what a lasting impression he had carried with him to this day.
It has always been our family philosophy to be a doer not a bystander in life. Research and data are not the most digestible of topics to raise funds for or get excited about, but what if I said taking Benylin may hold the key to dramatically reducing many late onset neurocognitive issues for children with leukaemia under research at the moment? Research can be as simple or as complex as it needs to be to get results, so watch this space! It just takes some clever and driven individuals to want to make a difference. Whilst I would never have the acumen to aspire to be a researcher, I do see their infinite value and can play my part in supporting them. A big thank you to all our donors for helping to make this possible.
Conference Agenda Published by Children with Cancer UK
Many of you will know that Skye held onto his sense of humour in the face of suffering so horrifically from his brain tumour and treatment side effect. Last night, on the anniversary of his death, we watched some of the funniest and sweetest home videos of baby Skye and remembered the happy days pre cancer. We hope to bring joy to someone's day by watching his infectious giggle over an everyday household item.....
This is possibly the most important campaigning update that I have sent out in all my years working with Brain Tumour Research.
It contains a call to action for every one of you who campaigns alongside us to improve options and outcomes for brain tumour patients through improved research funding.
After this week’s launch of the APPG on Brain Tumours (APPGBT) inquiry report, we can now confirm that there will be a general debate on Brain Tumour Research Funding within the main chamber of the House of Commons on Thursday 9th March with MPs requested to be in the chamber by 14:00.
What a chance we have to make our voice heard! But that voice will only be heard, and then amplified, if we can get as many MPs to speak in the chamber as possible.
That is why today - as a matter of urgency - we are asking you to contact your MP.
Remember to Cc Hugh (hugh@braintumourresearch.org) and Sally (contact@blueskyethinking.org)
See below:
Subject: Chamber Debate on Brain Tumour Research Funding March 9th 14:00
Dear (Your MP’s name)
I am writing to you in the hope that you can speak and support the Brain Tumour Debate on Thursday 9th March at 14:00.
Our family are constituents in ( YOUR ADDRESS PLUS ANY PERSONAL INFORMATION YOU WOULD LIKE TO ADD SUCH AS:)
Our friends Sally and Andrew, lost their son Skye to radio-chemo neurotoxicity after receiving treatment for a brain tumour. He was five. Much of the treatment being carried out had not changed in 30 years! When we took further interest, it became clear why and we were shocked by what we discovered. Brain Tumours have received less than 1% of UK research funding into cancer and childhood brain tumours only receiving a small fraction of that 1%. This is despite brain tumours being the single biggest cause of childhood cancer deaths.
We also learned that sometime after Skye’s death, there was hope for the future, £40 million was pledged by Government over 5 years with the statement “The Government is committed to provide £40 million investment over five years for research into brain tumours as part of the Dame Tessa Jowell Brain Cancer Mission.” Five years have now passed and yet only a tiny fraction of that money has in fact been released to world class UK researchers. Thus, we are calling for that to be released and used as it was intended. We are lagging behind other countries and this is something I personally feel very disappointed about.
The APPG on Brain Tumours, chaired by Derek Thomas MP who has called for this debate, and request that you read the report ‘Pathway to a Cure - Breaking down the Barriers’ that was launched at Westminster on Tuesday 28th February.
Could I draw your particular attention to the report’s Executive Summary and the Key Recommendations which are;
• The Government should recognise brain tumour research as a critical priority, developing a strategic plan for adequately resourcing and funding discovery, translational and clinical research by 2024, ring-fencing £110 million of current and new funding to kick-start this initiative
• Government must ensure a robust tissue collection and storage infrastructure is in place across the country
• Government must do more to build research capacity
• Government should ensure equity of access to clinical trials and that the clinical trial database is robust and up to date
• Pharmaceutical companies are choosing not to pursue the development of brain cancer drugs in the UK. The Government should simplify the regulatory process and introduce tax reliefs and incentives for investors
• Funding bodies should ring-fence specific funding for research into childhood brain tumours.
Brain Tumour Research can provide a briefing document and more detail if you email them directly at hugh@braintumourresearch.org.
Please make time to read my story, to look at the recommendations and attend the debate on the 9th March to call for change and amplify the voice of brain tumour patients and their families.
Brain Tumours kill more children and adults under the age of 40 than any other cancer, and one in three people know someone affected by a brain tumour.
We can only hope to change this by investing in discovery science and by adopting the recommendations of the ‘Pathway to a Cure’ report.
I implore you to take part and if you cannot attend, make it a priority to fully understand what is discussed and where you can help.
Yours in hope
(Your Name)
(Your postal address and postcode)
If you don’t already have it - you can find your MP’s name and email address here:
https://members.parliament.uk/members/Commons
You can watch live here on Parliament TV:
We wish we had just one more chance
to see your happy smile
To laugh and celebrate with you
just for a little while
May the winds of heaven blow softly
and whisper in your ear
How much we love and miss you
and wish that you were here
Skye and some of his best buddies at his 4th Birthday Party - ignorant bliss and the absolute best of years!
Southbourne 2022
Skye and Andrew 2013
Like millions of other parents this week, my boys posed for me by the front door, and I took the traditional ‘first day of a new school year’ photo.
I experienced a fleeting pang as my dear first-born son, Skye was missing from the line up and would have been super excited to be heading off to secondary school (OMG am I THAT old?).
These feelings of heartache cannot last long as a second later, we were all sprinting along the road, the wagon loaded with kit (although inevitably with missing items), leaking water bottles, wellies that are quite possibly a size too small, winter coats, summer hats but above all, wearing BIG SMILES.
However, the morning hadn’t quite gone as smoothly as I had hoped, and sitting on my own at home now, with a quiet house that I haven’t experienced in months, the emotional baggage one buries to get through each day is bubbling to the surface. So, instead of falling to pieces or cracking on with the gazillion entries on my ‘to do’ list before collecting Sonny at midday, (pause to set alarm on my phone so I don’t forget that) not to mention the 18-mile run I need to do today to keep up with my London Marathon training (HELP!), I thought I would sit down with a coffee and try to work out what is actually important in life. Too deep for a Tuesday morning? OK, I will start with the somewhat humorous start to my day.
6.15am Wake up next to my husband – his head crammed with an inspirational presentation about the term ahead to deliver to a school full of pupils and staff who would all rather still be on their summer holidays. Mine, whirling like a cyclone with all the things I need to remember to do this morning, starting with, the question as to why on earth I stayed up watching The Martian last night in some vain hope to extend the holidays just a few more hours.
I don’t remember who spoke first but our conversation before Andrew left for work, was a string of memos for each other and I feel bad now that I didn’t even wish him luck.
6.20am Check phone – Only 64 new notifications, mainly from frantic mothers from 3 school WhatsApp groups, asking questions and sending grateful or confused emojis.
6.25am Shower, dress, rouse the sleeping bodies (phone pings a few more times) I’d better check, it could be something urgent I have missed.
7am Sort, bag and label all the second-hand uniform I need to hand to people at various rendezvous points this morning and answer, a now torrent of messages about sizing, additions and cancelled requests – BREATH – You offered to sell this as a kindness to another mum who has moved away, and she will be very grateful for the extra pennies. (Phone pings)
7.15am The twelfth time calling upstairs for everyone to come down for breakfast, the tone sounding a little less like a calm ‘Miss Honey’ with a slightly hysterical pitch creeping in. BREATH – they will be downstairs soon and we still have plenty of time, don’t dampen their spirits.
7.30am Finally, everyone has the correct spoon (must be the one with rainbow dots, that is still dirty in the dishwasher for Beau, definitely NOT a baby spoon for “I’m a big boy now” Sonny, a knife for Jesse because he does not like any of the cereal on offer and would now like a round of toast with the correct bread and finally, no spoon at all for Flynn because he is not Flynn but a hybrid Quetzalcoatlus crossed with a Pachycephalosaurus dinosaur and they would just eat from the bowl. BREATH – They have great self-worth and wonderful imaginations that will take them far in life.
7.45 “Ten minutes until we need to leave everyone, have you got your shoes on and brushed your teeth?”
“Yes Mumza.”
Dash outside to feed the bunnies and return inside to find Flynn in floods of tears because he has just realised that we do not own stick insects as pets anymore (they in fact died of old age, about 8 months ago).
Flynn: “Those guys were my best ever pets and the only pets I can ever love. (sniff) Look, I have real tears.” (Phone pings)
Jesse: “Well you can’t have loved them that much if you didn’t know they were dead.”
Flynn: (escalated crying)
BREATH – Children have feelings about many things we may not remember as adults, it is very important for them to feel heard and have their emotions validated - just not when we have 4 mins to leave the house. (Phone pings)
7.50am Sonny and Beau: “Look at this slug, he could be our new pet… oh, my hands are covered in slime and it won’t come off.” BREATH – They don’t understand that snails and slugs can carry lung worm and it is great that they have demonstrated their compassionate side, but now I have to scrub off slug slime and we only have 2 minutes to leave the house! (Ping, ping, ping)
7.53am Right, let’s go, why are you wearing sliders instead of your school shoes??? BREATH – running short on the reasoning and rational capacity. Lots of chastising.
7.55am I have officially morphed into Miss Trunchbull. We should have left by now, quick line up outside for a photo, but be careful of the massive….too late. Outside the front door, there is a huge puddle of water we have been waiting for the drainage to be addressed now for 4 years. BREATH - Patience level alert – rock bottom. Dry shoes, (ping, ping) mute phone.
8.01am Beau: (gasp) “I MUST put my lip salve on for the photo, Granny always puts her lipstick on before she goes out of the house. It is in my special box by my bed, or in the den with the soft toys, or maybe under the swing in the back garden.” BREATH
8.02am I am now brushing their hair with a little more vigour that perhaps is appropriate and scratch Flynn on the neck with the side of my ring.
Flynn: “Ahhh, is there blood? I’m dying.” BREATH
8.05am ‘Snap’ Let’s go, no racing.
And so it went on….
At the third set of school gates, I stopped in my tracks when a young lad arrived in a wheelchair having visibly undergone chemotherapy over the holidays. As he was wheeled in to greet the class and start his school day, Flynn and Beau looked at me and I knew they were instantly thinking about Skye. They don’t fully understand what their friend at school will be enduring, no one can truly understand, but it is important to do more than just feel sorry for someone and then get on with one’s own day. We all have it in ourselves to be better than that. However hard, it is so important to pause and think about how someone else might be feeling. Anything that life threw at us this morning would pale into insignificance for that other family. So many people are going though devilishly tough times and an element of selfishness is required to operate, but just sending a message saying you are thinking about someone, or an unspoken compassionate squeeze of the arm can have such a profound impact on someone who is hiding pain.
When we live in a society that operates at a ‘breakneck’ pace, it so very hard to make sure that we remember what really matters and keep true to the saying ‘Treat others as you would like to be treated yourself’. Everything was getting the better of me this morning and I did not behave well towards my children or my husband. Yes, I am only human and yes, it is easy to always come up with excuses as to why we snap but I do feel somewhat ashamed and will apologise to everyone this evening because I feel that it is important for them to hear that I am sorry for all the projected stress I laid at their feet. I will then follow that up with amending the alarms to go off 15 minutes earlier, draw up a new ‘house points’ reward chart and perhaps not sign up to yet another school WhatsApp group – can I really handle 4 simultaneously???
God speed and good luck with the rest of term to all you yummy mummies and daddies out there.
Year 6, Year 2, Year 1 and Pre-School - September 2022
Happy Holidays and a BIG thank you to all our supporters this year. We have achieved a lot despite the challenging times for all charities. Do take a look around our new website when you get a moment https://www.blueskyethinking.org We wish you health and happiness for 2022!
It has been an absolute honour to have assisted Sacha on this wonderful resource to help break the barriers of such a taboo subject, yet one of life’s most important - how to have a good death. It is not necessarily a ‘best seller’ in number of copies sold (thank goodness), but for a family facing the subject matter, there will be no finer book to read.
Sacha Langton-Gilks explains the challenges, planning and conversations that can be expected facing the death of a child from illness or a life-limiting condition. Practical advice on how to work with healthcare professionals, drawing up an Advance Care Plan, and how to move care into the home if you wish, sit alongside frank observations of how things worked for other families who have faced this situation.
Empowering and reassuring, this book helps families and young people themselves plan the best possible end-of-life care.
Buy Now £13.99 from Amazon Smile
You always said you wanted to go to Legoland when you were better. You said in your very mature way, that it was nicer to look forward to things rather than the thing itself. Maybe you were right, or maybe they were never quite as fun when you were feeling so poorly but I often wonder if we should have taken you and not waited. You wanted to keep the special day a goal to aim for and I will always respect you for that.
It was with an incredibly heavy heart that I agreed to take your brothers and what better day to pick than your 13th birthday my darling boy. Flynn is so much like you and was in total awe. Beau drew you a card as he feels so close to you even though he never met you.
A day never to be forgotten in celebration of a boy never to be forgotten.
YOU DID IT! Huge thanks to Oxfordshire for helping fund new research targeting high-grade childhood brain tumour.
We are very proud to be co-funding this incredible feat in progressive science together with Little Hero and Children with Cancer UK
A more personalised and targeted treatment approach that Professor Clifford and his ground-breaking team of researchers are offering through INSTINCT-MB, elicits significant hope of progress for children of the future.
As many of you will know, our dear son Skye, died just before his 6th Birthday. Despite being 'cured' from a high-grade brain tumour, he soon became paralysed from the neck down and was subsequently diagnosed with radio-chemo neurotoxicity which had been brought about by the therapies his little body endured, and tragically died soon after.
The INSTINCT-MB project will seek to develop new treatments, using new drugs and promising new immunotherapies known as CART-T cell therapies. To read about the project, please click here.
Winning the Oxford Bus Company #brandthebus competition and subsequent ongoing support from local people SPOTTING, SNAPPING & SHARING images of our #BigBlueDreamBus as it drives about on Oxford's roads, has helped us hit our fundraising goal.
This fun bus 'treasure hunt' is still ongoing, so please continue to look out for our Charity bus and share a photo on social media together with the hashtag #BigBlueDreamBus as it will raise £30 for EACH PHOTO SHARED and cost you nothing as the money is donated from these wonderful local businesses #white_rabbit_pizza_co Nomads 7s Vets, Bower Bailey Solicitors, Master Spas UK, Conrad Energy, Fortitude Communications
For more information how to share photos of the bus click here
Seven years means nothing when you are missed so much each and every day.
I have never shared this video that was played at Skye’s funeral before. It feels right to share it today and can be found at the bottom of a new page on the website dedicated to Skye’s Story. (It cannot be played directly from here.) If you are able to watch it, it would mean the world.
With special thanks to the producers of the musical ‘Wicked’.
Having had the pleasure of accommodation at The Gloucester Royal Hospital, enjoying treatment for pneumonia recently, I had time for quiet contemplation, a somewhat rare commodity in our house!
My mind was possessed by two rather extraordinary women who have touched my soul in the fortnight.
The first, by a random, yet most profound chance, I received an email sent by a lady who has suffered catastrophic loss in her life, thanking me of all people, for being honest about grief. She had stumbled across the Charity while searching for a company with the same name and “fallen down the rabbit hole” of my blog.
She raises the same issues that afflict so many of us who have made the difficult decision to choose life after the loss of someone uniquely important in our lives. She talked of the ‘secondary losses’ that have to be grieved too, and those will always be present. Simple things such as the task of taking a family photo, or laying the table for dinner. Even during moments which should be perceived as ‘respite’ or positive, like a holiday, are marred with feelings of deep sorrow, guilt and pain.
I too hope that one day, as she does, that our ‘death phobic’ society can gently come round to the way of thinking, that far more comfort and strength can be stirred inside a lost soul by trying to understand what it feels like to have to walk a new life after loss. It will rarely cause melancholy, or a worsening state of self-pity as feared by many well-wishers who are so determined to believe that to ‘move on’ is the key, but instead will allow something much stronger and more everlasting to form, which is a ‘bridge’.
<img src="https://images.squarespace-cdn.com/content/v1/52f80273e4b0c80880f13246/1619185011497-6PLVHIEY9BZPGHUQR1WR/Bridge-Buller-Gorge-New-Zealand.jpg.824x0_q71.jpg" alt="A bridge connects the tree-lined cliffs of New Zealand's Buller Gorge. (Photo: Philip Bird LRPS CPAGB /Shutterstock)" />
A bridge connects the tree-lined cliffs of New Zealand's Buller Gorge. (Photo: Philip Bird LRPS CPAGB/Shutterstock)
I like the visualisation of a tiny suspension bridge, crossing a fantastically beautiful and vast valley of trees and running rivers; the pathway remains precarious and terrifying, tremulous with feelings of never-ending loss, but with strong and intertwined support, this path can be travelled. Whilst nerve wracking, when the realisation hits that it is, in fact safe, it is even possible to drink in and savour exquisite beauty, joy and happiness, all be it for a moment before the wind picks up again.
The other young lady was a recent ‘ward buddy’ who has lived with a condition I had not heard of before called Neurofibromatosis (type 1). Despite significant and very apparent suffering, she exuded warmth and empathy of the most generous kind. She not only helped me and others out with a few practical hospital stay items, but offered those around her little challenges to help them to help themselves fight varying respiratory conditions. No sooner I had I got home but noticed, she has already set up a donation page to Blue Skye Thinking and plans to undertake some sort of challenge herself to help children with brain tumours. I think we can all draw goodness from this remarkable woman, who, instead of complaining about the problems she faces in life, strives to make the most of them AND help others along the way.
In conclusion, I suppose what I am saying is, don’t be afraid to share your thoughts, you never know who or when it may help someone else or even yourself. Be pro-active rather than inactive. In the true spirit of my new ‘friend’ on the ward, I’m setting a little challenge to anyone who reads this… Pick one night this week to take half an hour learning about a small Charity. It could be anything from how to save our dear planet, discovering a new Charity supporting research into rare but serious conditions such as Neurofibromatosis or just look up a Charity you have supported in the past and learn about what they have been up to. Cut one treat out on the grocery shop and donate that £2 instead.
Go on, Netflix will still be there tomorrow!
Reaching far across the Buller River in the South Island of New Zealand is New Zealand's longest simple suspension bridge. At just over 360 feet, the bridge is an absolute thrill to cross. If you get to the other side and want even more adventure, you can take a zipline back across! Skye LOVED IT!!!!!
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Two voices are often at odds inside my head. The harsh, fiercely practical one that believes that once you’re gone, you’re gone, devastating though it is and nothing can make up for the abyss that is left behind. The other, a strong sense that there is more to life than we can ever comprehend and that absolutely no-one can be certain of anything. That voice tells me that every single life has an impact on someone else’s while forming, living and after, perhaps the later even more so.
Yesterday was another anniversary to remind us of those last few hours we shared with our darling boy. It is so hard to know how we will feel but we spent a beautiful day in Bladon at Skye’s graveside, enjoying the wonderful playground that has been built by the community and of course the magnificent grounds of Blenheim Palace.
In the evening, I was reading the penultimate chapter of Harry Potter and The Half Blood Prince to Jesse and a paragraph really jumped out at me…
“He is gone Harry, gone.”
“He will only be gone from the school when none here are loyal to him,” said Harry, smiling in spite of himself.
If I am honest, although I have played the following track hundreds of times over for the boys in a vain attempt to bring reason and hope into our lives, I have never really believed it myself but now, when I see glimpses of Skye in his brothers, I will perhaps accept that Skye does live on.
Thank you for staying ‘loyal’ to Skye and to us in all your kind words and thoughts.
<img src="https://images.squarespace-cdn.com/content/v1/52f80273e4b0c80880f13246/1598819346982-61JC22NQDMOGDFORIX6L/Screen+Shot+2017-01-16+at+13.14.57.png" alt="Screen Shot 2017-01-16 at 13.14.57.png" />
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Well here we are in the middle of a pandemic but for many the overwhelming sense of friendship and unity is shining brighter than ever.
Has it really been a year since my last post?! My first thought is that of guilt for not having put pen to paper and thus panicking that people might think that Skye is not foremost on my mind anymore. He is of course and as always, features somehow during each and every day.
After the initial worry and flurry of getting ready for ‘lockdown’ I have to be honest and say I have rather liked the fact that normal social rules don’t apply right now. The perfect excuse to hunker down with my boys and selfishly keep them all to myself, enjoying their individual quirks and personalities and heaving a huge sigh of relief not to have to put on the upbeat smiley face to meet and greet at the school gates.
I can see how almost 6 years on, some would say that is a lot on time to have learnt how to live without someone they love. For the most part I do feel like I succeed in fooling people into thinking I am doing just fine although I swore to myself that I would never be anything other than offer the cold truth. The complication lies however in wanting to allow the boys to forge new relationships with new friends and not have the weight of my pain on their shoulders. I suppose therefore I still need to have this blog as a form release. Thank you for allowing me this.
Lockdown has been replete with lessons about interpersonal relationships. It is fascinating to read articles about how some ‘friendships’ have decayed while others, often with old school friends have been rekindled. This is also true about how relationships with friends can change after losing a child. I have learnt who has my heart and who I feel comfortable opening up to. It goes without saying that the ‘golden oldies’ who can reminisce about things Skye said and did are friends I will treasure forever. Their willingness to coax out of me things I want to get off my chest but don’t offer up easily and never get tired of me saying that “I miss him so much” is truly special. I have learnt however that new friendships can also blossom but only with those who are able to be generous with their own emotions, have the ability to truly understand how ‘real life’ has altered exponentially for us as a family now and above all, to ask about Skye! I hope I don’t underestimate how lucky I am to have such wonderful people in my life.
Friendships between husband and wife have been pushed to a whole new realm in lockdown too, I am so lucky to have a husband who is in touch with his emotions and cares deeply for the wellbeing of all young people he encounters and remains one of my best friends. Don’t get me wrong though, there have been times during the last few months when I have wanted to chain him to the railings next to Emily Pankhurst! Home schooling has been both a wonder and a hair pulling nightmare in almost equal measures. Having surpassed even my own expectations in buying a ‘pick ‘n’ mix’ toy sweet shop on eBay to roll out a successful pre-school mathematics lessons, I often had to leave expectant pupils downstairs while I sprinted upstairs to check that Jesse’s lesson about the rainforest was more meaningful to him than just Twinkl cut outs of endangered species. Changed a nappy, fed the baby, answered a couple of Charity emails, returned to the ‘pre-school’ to find the maths lesson over and the art lesson under full swing by means of finding the pet rabbit coloured in. I would search AGAIN for an online grocery slot for the ‘shielding’ grandparents, only to be summoned back upstairs by Jesse who needs this time to make French macrons and produce a video on the region they originated from. Back downstairs again to remove the baby scribbling over Flynn’s ‘child led learning’ project on the Hadal region of the ocean and it’s gruesome looking sea creatures. Enter Andrew, “What’s for dinner?”
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Just like MANY women I know, life has been pretty full on to say the least! For those of you who have seen the hilarious Coronavirus Quarantine meme by Julian JJ Bantz, I would however choose A every time and wish more than ever that I could be living through all of this with Skye too. He would never be at a loss for something to do.
Andrew attended Day 1 of a walk to Pembrokeshire today to show his support for a family who have very recently lost their son to a relapsed brain tumour. I recall so vividly chatting to this animated and mature boy two years ago about how much he loved school and just can’t help but think how cruel this pandemic is to those who have already been dealt such a devastating hand. In his last few months of life not to be able to enjoy the simple pleasures of being with friends. I know he wanted to be remerged for his “strength and positivity” so I will always try to strive to think like that in your memory young man.
"Communication is health; communication is truth; communication is happiness," Virginia Woolf wrote in an essay published in 1925 in The Common Reader. "To share is our duty; to go down boldly and bring to light those hidden thoughts which are the most diseased; to conceal nothing; to pretend nothing; if we are ignorant to say so; if we love our friends to let them know it."
Although Skye was not blessed with time on his side to make a large number of friends. What they lack in number, they more than make up for in quality. I thank you dear friends for making Skye’s life so very fulfilled and special.
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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.
