Family Blog

Inner Turmoil, Outward Smiles

UncategorizedDecember 04, 2015

I have just come back from watching Andrew in a ‘Strictly’ dance competition at the school he teaches at in aid of BST, and I feel compelled to write. I can’t tell you how important it is not to judge a book by its cover. I do see how all our smiling fundraising photos can portray an image that we are doing well and enjoying life but that is so dangerous. It takes immense courage and strength to leave the house at all.

Tonight was the second time I have been out in the evening since Skye died 14 months ago. The first outing was for a jazz gig my amazing friend performed in aid of BST after having lost a child herself earlier in the year, so you see why I wanted to go and support her?

It was important this evening for me to support my wonderful husband who has been so patient and supportive of my black times and to take an excited and proud Jesse to cheer on his dad. I have however been floored by something someone said to me; “I don’t know how you and Andrew manage to keep going, achieving all the things you do and have fun because if my child died I would be just too devastated.”

I know we shouldn’t care what other people think but we do. We care that they understand about brain tumours, we care they understand that research is the only way the outcomes will change, we care so much, that we set up the Charity. We care too that people know facts about grief, which is why we speak out as honestly as we dare. In life, we have such little control over so many things. Andrew and I fought alongside our beautiful son and would have given absolutely anything to die instead of him, but we couldn’t, it wasn’t a choice, just like we don’t really have a choice now.

We could end our lives, prove just how much we loved him, that we cannot live without him, perhaps even do it in case we could be with him in an afterlife, but where would that leave our other beautiful boys and where would it leave the children who will be diagnosed tomorrow? However sad we are, we are stuck here and will therefore, in Skye’s very own words, “make the most of what we have”. It is a million miles away from easy, but we will do it because there is not really an alternative. We smile and appear to be fine because we are British (well I am) and we want people to feel at ease, we live with an inner turmoil every day, we are just getting better at hiding it.

All the dancers did brilliantly by the way and I am so very grateful to everyone who put themselves out of their comfort zone to achieve amazing things - well done. 10 POINTS ALL ROUND!!!

The Gruffalo Autumn Nature Trail

UncategorizedNovember 13, 2015

CLICK ON IMAGE FOR VIDEO CLIP

Last week was Skye’s 7th Birthday and it took every ounce of will power just to breathe. Jesse decided to make him a cake and after singing happy birthday, shouted, “Have a great day Skye”.

It was very apt timing therefore, that we received the news that Julia’s latest book, The Gruffalo Autumn Nature Trail was in print. Andrew rushed to the Bookstore in Abingdon and picked up a copy. Skye and I read all Julia’s books in hospital, his favourite being Jack and the FlumFlum Tree. Seeing the dedication in black and white is amazing but what I love more is the fact that someone Skye admired so much, shared the same feeling for him.

The book is part of a four-part season’s series and is the best ‘to do’ book I have ever come across, Skye would have thoroughly approved of its action packed content. Jesse and I have already transformed a leaf, made a sticker tree and earned our Gruffalo Explorer badge! To pick up a copy, visit Abingdon Bookstore or Blackwells Oxford, who have kindly agreed to donate a percentage per sale to Blue Skye Thinking. Alternatively you can visit our website www.blueskyethinking.org.

“While I sadly never met Skye, I was very touched by the video clip which I saw of him and his younger brother Jesse, and impressed by what his parents told me about Skye’s courage and his love of discovering new things. That’s why I dedicated The Gruffalo Autumn Nature Trail to Skye and Jesse. I hope Jesse and his new baby brother Flynn enjoy discovering all the wonderful things that autumn brings."

Julia Donaldson

Remember, Remember the 5th of November

UncategorizedNovember 05, 2015

A Book of Hope

UncategorizedOctober 14, 2015

Guess Flynn's Birth Weight - The Big Reveal...

UncategorizedSeptember 20, 2015

Going Home

UncategorizedSeptember 19, 2015

Flynn has proven himself to be made of strong stuff having fought off a nasty infection, which seems to want to remain a mystery! The quick actions of the nursing staff on the ward and the commencement of some pretty hard hitting antibiotics, no doubt changed the outcome as he has remained ‘well’ and we could have had a very sick baby on our hands.

On this occasion, we were lucky and Flynn’s lumbar puncture and blood culture provided negative results for meningitis, but other babies are not so lucky and although rare, is a reality for some. If, like me, you assumed that the all important non-blanching rash is the key symptom of meningitis, it was not Flynn’s rash (which he did not present with initially) but the following symptoms that raised alarm bells among medics and I thought it prudent to share them with you, in case it sparks a useful memory to help a sick baby in the future to begin treatment quickly.

These include: a fever with cold hands and feet, swollen fontanelles, unusual crying or moaning, drowsiness, floppiness, dislike of bright lights, grunting or rapid breathing, pale blotchy skin, or a purple-red rash that doesn't disappear when you press a glass against it.

Flynn showed all of these symptoms with the exception of the non-blanching rash and floppiness. Whilst not meningitis, he has no doubt suffered a pretty impressive infection of some sort and we are grateful his inflammatory markers are now almost back down to normal. Three cheers for the NHS!

Flynn and I have also both been suffering with a head to toe rash (you don't need to see mine), They have been monitored and with both our fever and symptoms much improved, we are on track for home!

During our stay in HDU, I realised how much milk some premature babies require and have subsequently signed up to be a milk donor. It remains to be seen just how much I will be able to produce with my rather hungry hulk, but if anyone out there feels able to express a little extra for the sake of these tiny bundles then contact Amanda.Wood@ouh.nhs.uk or visit OXFORD MILK BANK

As you have been given a clue as to baby Hall's birth weight you have only 1 day left to place your bets at:

https://www.justgiving.com/flynn-birthday

The man himself will make the big reveal tomorrow when he will be one whole week old already! Well done Flynn for your first ever Blue Skye Thinking fundraiser and thank you to those of you who played along and pledged your £1.

Going home will be, like every other big event in our lives, a time of great excitement and joy but of course coupled with deep sadness that one boy will be missing. In Jesse’s own words “I think Flynn is crying because he knows he will never meet Skye.” Flynn has two brothers, just as Jesse now does - forever and always.

Skye as the proud big brother almost 4 years ago.

Jesse as the proud big brother yesterday - Monday 21st September.

Life Can Change In An Instant

UncategorizedSeptember 15, 2015

Baby News - Take 2!

UncategorizedSeptember 13, 2015

We are proud to announce the safe arrival of our third beautiful son, Flynn Alexander Phoenix Hall. Born at 2.30am today in the water pool at the JR's wonderful Oxford Spires Midwifery Unit.

Jesse is a very proud big brother, and despite him stating that he already had a brother, so would have rather had a sister, he seems to have been won round with the concept of being able to have a matching wardrobe again!

We are very grateful to have Flynn in our lives. We are equally grateful for Jesse, who has been through so much upheaval too in his life so far.

He once again blew us away with his maturity and compassion, when he heard Flynn crying for the first time and immediately said that he thought it was because he would never get to meet Skye! He then went on to say that Flynn could help him with his "very important work" for Skye's Charity and with this in mind we thought of a fun game everyone could play to guess Flynn's birth weight!! Pledge a £1 and have a punt....

https://www.justgiving.com/flynn-birthday

Baby News!

UncategorizedSeptember 08, 2015

"I just can't believe it mummy, Lily and JoJo have had babies!!"

A rather unexpected finding today, but Jesse's rather beautiful Lionhead rabbit Lily, gave birth to 5 beautiful babies. JoJo, a Mini Rex, is the proud father, and for the first time in a very long time I actually felt genuine happiness and excitement! Being rather overdue myself, I feel hopeful that the miracle of new life will bring joy back into our hearts.

Lily and JoJo when they were just wee themselves!

(As an ex Vet Nurse, I know we mustn't handle the babies, but we needed to do a quick house move to accommodate everyone so took a quick snap and all is well. The baby 'hippos' will now have peace and quiet for the next couple of weeks. Three guesses which one Jesse likes best... And no, we won't be keeping any so new home enquirers are welcome!)

Since my announcement of our impending new Hall baby, I have to thank some very special friends, some of whom have been through extremely tough times themselves, for all their support, long and rather dark conversations. You all mean the world to me! I also need to praise the NHS yet again, for taking my very dark thoughts seriously, and have put in place a number of safeguards prior to birth and post birth to make sure such an emotional time is made as secure and as possible.

The 29th was a very difficult day but of course every day is empty without our beautiful boy. Re-living every second of Skye's last day was utterly heart breaking. Watching him draw his last few breaths after saying he loved me to infinity brings tears to my eyes while I type this and every time I think of him saying it. I love you too, to infinity and forever.

A very magical moment happened on the evening of the 29th, those of you in Abingdon may have seen it also, but at Jesse's bedtime, we looked out of our bedroom window and there was the most magical full rainbow in the sky. Jesse then dashed through to the front of the house to see if he could see it from his window, which of course he couldn't, but what he did see was even more spectacular and to his squeals of delight and urgent appeal for us to rush through, the three of just just gazed at the most beautiful pink sky. Jesse finally broke the silence by saying the thought is must be Skye making it pink because he knew we were thinking about him and Skye knew how much Jesse just LOVES PINK! Whatever one's beliefs are, it was a truly magical sight.

Without wanting to send another blog post out too soon, we also wanted to let all the Loom to the Moon helpers out there know that BBC's Blue Peter on CBBC, will be doing a feature on Skye's record breaking bands THIS THURSDAY at 5pm, so do tune in if you can and see if you can spot your band!

If you missed it, you can watch again 8 mins in: http://www.bbc.co.uk/iplayer/episode/b06b955k/blue-peter-world-records-chart-toppers

SEPTEMBER is Childhood Cancer Awareness Month - Win an APPLE watch!!!

UncategorizedSeptember 01, 2015

The Last Goodnight Kiss

UncategorizedAugust 28, 2015

Personalised World Record Certificates

UncategorizedAugust 23, 2015

Tilsley Children's Fun Run

UncategorizedAugust 18, 2015

Dancing in the Sky

UncategorizedAugust 15, 2015

Prime Minister's 'Points of Light' Awarded on summit of Sgurr Alasdair, Isle of Skye

UncategorizedAugust 05, 2015

Leaving Blenheim Palace with 16 other cyclists, Andrew set of on this epic 2Skye4Skye adventure! The 636 mile journey will include a combination of cycling, kayaking, swimming and hill walking, taking in some of the United Kingdom's most stunning scenery.

Skye is buried in the same cemetery as Winston Churchill in Bladon next to Blenheim. Whenever we visit, we remember Winston's famous words "When you are going though hell, keep going." That is what Andrew and the other cyclists will be thinking at times during their gruelling cycle ride and what we will probably be doing every day for the rest of our lives.

It was wonderful to have been so incredibly well supported on the Premiere 2Skye4Skye and we hope more keen cyclists will join this biennial event in 2017.

After leading the boys out of the gates, Jesse opted to stay in the support vehicle for the rest of the morning but made it very clear that Daddy must get all the way to the Isle of Skye in order to meet his hero Danny MacAskill.

After a week of laying loom bands and being 8 months pregnant, I handed over the unenviable task of 'support team' to Sandy Hall (Andrew's mum) who made it all the way to Fort William where she was relieved of her duties by John Hall (Andrew's Uncle). Without their help, the trip would have been very much tougher, so we owe them a huge thank you!

It is now, I hand over to Andrew for his thoughts and feelings during the trip...

It seems like an eternity since we left Blenheim Palace on Saturday 25 July, so much has happened. It has truly lived up to expectations, and despite the often inclement weather, the team have met some amazingly kind and generous people. The Forest of Bowland proved challenging and spectacular in equal measure, with its incredible scenery and rolling hills.

Horatio definitely getting down with nature!

Elliot - The Go-Pro man himself!

The variety of cycling on sometimes obscenely busy roads, kayaking the length of Lake Windermere in all its beauty with the intermittent rain, taking on the rigours of the West Highland Way on mountain bikes, the paths that had become rivers in the torrential rain, the tumbles, the conquering of Ben Nevis, the sunshine and the calm and serene evening along the edge of Loch Duich, have made this one of the most exciting and humbling adventures. At all times remembering how privileged we are that we have the physical capacity to achieve this feat, while children across the country are suffering the effects of the rigours of treatment for brain tumours and other cancers.

Not all smooth sailing when I managed an impressive forward flip over the handle bars of my bike (not after visiting The Wee Train). Despite the huge personal disappointment of having to miss a day cycling in order to have a trip to the local hospital, Jesse insisted on a photograph and it reminded me that it wasn't as bad as Skye's scar!

So many people who we have met and chatted to along the way, have been touched by what we are doing and spontaneously donated to the Charity. To all of those people who have helped us, we are truly grateful. The Isle of Skye with all its mystique and raw beauty provides us with the final challenge as we seek to conquer the highest peak on the rugged Cuillin Ridge, Sgurr Alasdair. Our ascent starts at 10am on Wednesday the 5th August from the Glen Brittle Campsite. With over 1000km completed, the final objective is tantalisingly close.

Mind how you go Olly!

Making to to the sheer elation of making it to the summit was made an even more emotional when Matt, the guide from Skye Adventure presented me with the Prime Minister's Points of Light Award which recognises outstanding individual volunteers and people who are making a change in their community. For Sally and I, finding the emotional strength to to continue is so much harder now than when Skye was alive. We certainly don't feel any more deserving than many other people striving to make a difference in the world but we are honoured to have been chosen as 'Points of Light'. Winning this award will further bring to the public eye how much more we intend to do and how everyone's support can really help.

If you have a Twitter account, please 'favourite' or re-tweet David Cameron's comments about us, as it will demonstrate to him just how much you all want to help us make a difference too. @Number10gov

I have almost hit my personal fundraising target of £2,000 through https://www.justgiving.com/2Skye4Skye-2015/ and I would like to thank everyone who has donated to our very special and life saving Charity.