Really living is...  

Jumping on a massive inflatable, at a campsite in Oz.

(Yes, we all used to lose our PJ's from time to time!!!)

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I have always been the sort of person to never 'waste a wish', seizing every opportunity to take advantage of a chicken bone, eyelash, black cat and birthday cake. Of course during the past year I have found myself almost seeking out opportunities to pray, beg, wishing beyond all else for Skye to get better. Now he has not, I feel no urge to ever make another wish again. I throw chicken bones in the bin, drop eyelashes to the floor and the neighbours better watch out for their cats!

It broke my heart at Pre-school today, when a mother told me her daughter, who had been in the same class as Skye, had said in answer to her mum telling her to make a wish, that "wishes do not come true". When questioned further, she said, "I wished every day that Skye would get better and he didn't".  The trouble is, as a parent, we are supposed to have all the answers and protect our children from the harsh realities of the 'grown up world' but sometimes children hit the nail on the head and their honesty is beautiful if not incredibly sad on occasions.

The magic has certainly gone from my heart forever.

Here is a secret only a few people know....

Most times you see Skye smiling in a photograph is because there was someone hiding behind the camera pretending to be the 'Day time / Night time Bird'!! 

We discovered this clip of funny animals during a hospital stay and it still makes me giggle when I watch it. Jesse can often be heard saying "No thank you, i've got an xbox" although I doubt he knows what one is.

Enjoy...

Today I only popped out to get petrol while my mum was playing with Jesse, I sat in the freezing car and cried solidly for 2 hours. It has been 5 months since Skye died but I still expect to see him in every room. Forever is too long.

“Today I was wondering about how Skye got up into the sky and wishing he could still play with me.”

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I am not joking, this recipe is AMAZING, best play dough I have ever made and SO easy. 5 mins to make, keeps for 6 months!

Here is what you need:

2 Cups Flour (any kind)

1/2 Cup Salt

2 tbsp Cream of Tartar

Up to 1 1/2 Cups Boiling Water (add in increments until you have reached a good consistency)

2 tbsp Oil

1 tsp Glycerine (optional but you can buy for 65p from supermarket home baking section)

Colouring (I like Wilton Gel Colours as they are vibrant and much thicker so you need a tiny amount)

Sparkles (optional)

Here is what you do:

Mix dry ingredients

Add wet ingredients

Stir like mad and kneed immediately - DONE!

N.B You can either add colouring to boiling water or add to dough after, which is quite a fun activity to do in itself, as your child watches the colour come through. Jesse's choice for Frozen colours!!!

DON'T FORGET, IF YOU ARE MAKING ANY ONLINE PURCHASES, ORDER THROUGH EASY FUNDRAISING AND HELP RAISE MONEY FOR BLUE SKYE THINKING (IT WILL COST YOU NOTHING)

A silly prank Skye found highly amusing, was to watch Andrew or I, walk along the side of a pool and 'unknowingly' step out onto the water, thus sinking, while still in full conversation. It didn't take him long to also master the performance to perfection.

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If you have young children, you will have no doubt, been subjected (numerous times) to 'Let It Go', a power ballad sung by Edina Menzel as the voice of Elsa from the film Frozen. Kristin Chenoweth, who sings 'Borrowed Angels', has sung many duets with Edina, including my all time favourite 'For Good', a track we played at Skye's funeral. The lyrics "It well may be, that we may never meet again in this lifetime" and "Because I knew you, I have been changed for good" get the tears rolling down my cheeks every time.

The song 'Borrowed Angels' is utterly beautiful and I fell in love with it many years ago, the very first moment I heard it. I never knew then quite how significant a song it would become in my life. I have not shared it until now as I struggle with the sentiment of some of the lyrics but today I had the honour of attending the funeral of a little girl whom became friends with Skye on Kamran's ward. She died just before Christmas and her mummy told me "Grace is an angel now". 

I am in total admiration to her parents and big brother for the beautiful service they gave their daughter today. You would think I would know exactly what to say but sometimes there is just nothing to say. Instead it seems right to share this song and as you listen, please remember Grace, a girl who didn't like life, she loved it. Her favourite quote was from the film Garfield "Hug me, feed me, don't ever leave me".

You are a treasure little one and I had the privilege to meet you, thank you for that. You will live in my heart with Skye forever.

Some people wrote in cards sent to us, that they realise we have had a really bad year but hope 2015 will be a much happier one. I do understand that people have the best intentions but my grief stretches far wider than my own personal loss and not only will 2015 not be a better year for Skye but Jesse too, who asked if Father Christmas could bring Skye back down the chimney. Life remains worse than before because at least back then Skye was with us. My suggestion to anyone writing well wishes to those grieving for the year ahead, would be along these lines:

"I am thankful for you and your beautiful child who will stay in our hearts through 2015 and the years after. Wishing you much strength for the year ahead which will be unimaginably difficult at times. You are loved."

I do understand that it is human nature to feel that if you are positive and upbeat, those around you will be likewise. Whilst I agree with this concept in many situations, there is also a stronger emotion which no amount of positive energy will push away and in fact has the very opposite effect, crushing people down further.

Q. What is worse than suffering?

A. Suffering without acknowledgement for the pain you are going through.

This can be seen in a situation as simple as a man (personal experience, not meant to be sexist) with a cold. They just want someone to know they are feeling rough. Whilst Skye and I always had a positive and practical approach to every stage of his treatment, and I knew crying at his bedside, saying how sorry I was he was in so in so much pain, would have just made him scared and worried, I never belittled his suffering or made light of it. At night, I always acknowledged what current difficulty he was facing and said "It is rubbish and I can see how brave you are having to be". 

Everyone likes to be 'heard' so next time you want to comfort someone, instead of showering them with positivity, try instead to acknowledge how hard things are, you are much more likely to provide the tiny fraction of comfort you were hoping for.

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I won't lie, I am glad Christmas is over but Christmas Day was not all bad. Father Christmas brought Skye a beautiful wooden box to keep some of his special things in (seen in a previous post wrapped up as a mysterious parcel).  TyHapuswho create these beautiful toy boxes have agreed to make a £10 donation to our Charity when any toy box is ordered if 'Blue Skye Thinking' is mentioned in 'notes to sellers'. Jesse did briefly try to process the physics of how the big red man got the box down the chimney but seemed happy with the answer "magic". I think Skye with his enquiring mind would have pushed for a more scientifically satisfactory answer!

Andrew, Jesse and I met up with my mum and her hubby at Skye's grave and Jesse was thrilled with some 'Frozen' bubbles that a thoughtful friend had left there. It was a beautiful sunny day and was the first time in a long while I caught a glimpse of the beauty of the natural world.

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After a very low key lunch and a two person disco, (myself and Jesse) we all went out into the night to release a bio-degradable lantern (Skye hated litterbugs) . I was very conscious of it being safe so we went miles away from anywhere and although a special sight, ended in Andrew trying to break a fall into a ditch by grabbing a gauze bush which resulted in 5 deep thorns embedded in his hand. When I asked Jesse the best bit of the day, he of course answered "Daddy falling in the ditch". Don't you just love kids!

We made it through, it's over for this year at least.  

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Jesse will receive a puzzle today. When he puts it together, this is what he will see.

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I am too tired to write anything good so I will just be honest. I don't expect anyone to read this on Christmas day so I can say how I feel without worrying about bringing others down with me! Really, I do not know how to exist any more. I feel so raw, sick of trying, sick of hoping, sick of life. The worst thing is, who am I to complain... Skye endured so much and never moaned yet here I am having just come back from his grave swinging from utter despair to feeling completely numb, void of all emotion as it is the only way I can operate.

My dad left when I was 13, and my mum used to cry herself to sleep. Her pain will never leave me. I don't want Jesse to grow up with that, yet somehow our household has changed from being a warm, fun, busy home full of people, children and dogs to a black hole. I tried so hard to give him a christmas eve to remember but he isn't daft and said "Do you think Father Christmas might bring my brother back down the chimney to me, I miss playing with him?"  He is pining too and lonely. I feel so embarrassed that I have been so strong for Skye but am struggling so much with Jesse. I am failing him and his precious childhood.

While I was at Skye's grave tonight, I just kept saying "I don't know what to do" over and over again. It's true, I am lost and feel like a death eater has taken my soul and left an empty shell I am expected to operate with.

Skye loved Christmas and today has been torture knowing he will never get to open his no.24 door on the calendar, never help wrap the last minute presents (one of his favourite pastimes), never get to look out of the window watching for FC's sleigh or lay out his stocking and leave a carrot for Rudolf. Jesse and I visited three houses this afternoon with gifts for Skye's best friends, they were just clay decorations Skye had made a year ago but it felt right to share them. I felt closer to Skye by going but within about 2 minutes wanted the ground to swallow me up because I could see the warm, happy homes bursting with family visitors and excited children and wished so fiercely that Skye could be part of it all just one more time.

I found myself at the hospital ward at about 1am (just got back). Not really sure why, just makes me feel closer to Skye I suppose. The nurses never turn down chocolate so I'm a welcome guest!

Love you Skye, to the moon, it's just too hard here without you.

Today has been another extraordinary day! 

We awoke to Jesse chatting away to his brother in the sky and a very frank conversation they were having too. Jesse was telling Skye that he was going to be a dancing frog and a doctor when he was bigger and that he would be able to help his friends to get better and not die. There were even pauses for when Skye was talking back to Jesse, it was beautiful but deeply saddening to listen to. I love Jesse dearly, he is such a responsible poppet, with a rather unhealthy love of amphibians!

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Andrew, Jesse and I arrived at Waitrose for 8.15am as we had very kindly been granted a bag packing day at the Abingdon branch. Having polished off half a baguette, (a trick I used to use to placate two bored boys while doing the weekly shop) Jesse got stuck into handing out BST cards and proudly telling customers the boy on the picture was his brother. Andrew too began politely packing frantic Christmas shopper’s groceries, listening to their woes while I just stood there in a complete daze, pinching myself that my lovely husband’s life had come to this. Contrary to popular opinion, starting this Charity has not been a therapeutic process, it has been one of necessity and let me tell you, standing there with a bucket, hoping that someone stops long enough to hear why we were there was one of the hardest things I’ve ever done. 

No sooner had I begun to give up all hope of what humans consider ‘priorities’ in today’s society, than I turned round and saw a sea people, wearing BST T-shirts, all stationed at the end of each till and I was overcome with gratitude for their support. Some were friends and family, some estranged clients, pupils from Abingdon School where my husband teaches, and even our RBS bank manager and his Clerk, who had become aware of our growing Charity because of the ever-increasing deposits in the local branch! Spurred on by this, I felt I could not let everyone down, so got stuck in.

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I have never explained as a mother why we have chosen to support research. It’s a tricky one to fundraise for, that’s for sure. It’s not touchy feely, it’s doesn’t lend itself to great ‘feel good’ photo opportunities and a lot of money is needed to get a successful ‘return’. Charities that support research and treatment are understandably not featured on high profile TV appeal programs, as it is much harder to show tangible results of how your money can help. But let me tell you, the little money researchers do get, comes almost entirely from donations from you, and is shaping the future for these children, whether they live or die, you can't get BETTER RESULTS than that?

Today, at the check out, I heard all sorts of stories, many inspiring and comforting, many saddening, some I would rather forget such as those who told me everything happens for a reason, or that they knew how I felt because they had lost a pet (I used to be a veterinary nurse and I love animals but I’m not sure it’s quite the same thing?). What I have taken away with me is that every charity is deserving, we are all exposed to different insightful information, ours happens to be the fact that the majority of funds to find better cures for the no.1 cancer killer in children comes from public donations to charities like BST, set up by broken families. Research for Children’s Cancer is very low on the priority pile, as drug companies don’t stand to gain much from any breakthrough so there is no real incentive. That’s life I guess, or is it?? One battle at a time Sally!

I still support any charity fighting for a cure for any of the life limiting diseases which children of the world face, and I hope in time, other Charities who are quick to feel we are a threat, realise we are all fighting for the same cause - freedom from suffering!

In the time it has taken me to write this blog, Andrew has counted all the donations from today and we are thrilled to announce that we raised a total of £2,710.41. BST has obviously struck a chord in people's hearts and we are truly grateful and humbled by the generosity. We are over half way to funding our first BST researcher who will work alongside some of the world's leading experts looking into how childhood tumours can be treated on a biological level, with the hope that, one day, we can do away with antiquated and toxic chemo and radiotherapy. Thank you!

In the words of Nelson Mandela, “There can be no keener revelation of a society’s soul than the way it treats its children.”

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Jesse spotted himself on the front cover of the paper first. "Mummy, you and I are at Skye's Garden, look!" The article refers to Skye's Grave at St Martin's cemetery, Bladon, where one will find garden trinkets, fairy doors and hidden treasure chests to create a magical place where children might want to visit. Click here for the full article which includes a beautiful picture of Jesse in his amazing Loom Band waistcoat, kindly made for him by a dear friend who also lost a son many years ago, he will never be forgotten either Jacqui. The more feedback the papers get from their articles, the more they want to follow a story, so do feel free to write a comment on the Oxford Mail's comments section under the full article. 

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Jesse and I made a big batch today to take to the Nurses at the JR who looked after Skye so well over the past year. We tried a couple of recipes and decided this was the best. According to Jesse, Skye hopped down to help too. They would make great Christmas presents! Jesse helped me take the photos too, not bad for a 3 year old hey?!

Ingredients

• 450g golden caster sugar

• 400g double cream

• 50g butter

• 1 tbsp glucose syrup

• 1 tbsp vanilla bean paste

Method

1. Line a 20 x 20cm cake tin with baking parchment. Tip the sugar, cream, butter and glucose syrup into a medium to large saucepan. Heat to dissolve the sugar and melt the butter, stirring now and again.

2. Once dissolved, put a sugar thermometer in the pan, making sure the end is completely covered by the syrup – if not, transfer the mixture to a smaller pan (with enough space for the syrup to bubble up). Increase the heat and bring the syrup to a steady boil. Keep bubbling, stirring occasionally to stop the sugar from catching, until the mixture reaches 116C – this is known as the soft ball stage.

3. Remove the pan from the heat and leave to sit, undisturbed, for 5 mins, until the temperature drops to 110C. Stir in the vanilla and a good pinch of salt.

4. Keep the sugar thermometer in the pan and begin beating the mixture with a wooden spoon, quite vigorously, until the temperature cools to about 60C. By this time the fudge will be really thick and will have lost it glossy shine. Remove the thermometer and continue beating for a few mins more. This process is very important when making fudge, as it creates small sugar crystals, which give the fudge its lovely smooth and creamy texture (see 'fudge know-how', below).

5. Before it sets completely, quickly pour the fudge into your prepared tin and smooth over the surface. Leave to cool at room temperature overnight – don’t put the fudge in the fridge as it will become sticky and won’t set properly. Cut into bite-sized pieces and pop in a box to give as a present. Will keep, in a sealed container, for up to 2 months.

Recipe from Good Food magazine, June 2013

This parcel arrived today and the postman said "Do you know what it is?" to which I replied "Yes". He then cheerfully tried to engage me in conversation by guessing "Toy box?" I believe in being honest with one's feelings and what you say, so I told him it would have been a toy box for my first born son's 6th Christmas, but instead, it is going to house all his precious things I want to keep to remember him by, because he has just died.

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The poor man did not know what to say! Luckily I was feeling quite assertive today, as opposed to deadly silent, which is a state my family are getting all too familiar with at the moment. So I immediately protected myself from the common phrases I hear too often, and got in there first by telling him all the things NOT to say, whilst gripping hold of his handheld signature device so he couldn't escape!

"The thing is," I blurted out "I really don't see why people keep insisting that 'time will ease the pain'. It is true, I am grieving for my own loss, the loss of a best friend and a first born child, and in time, I will have to learn to live and function with a 'Skye' sized hole in my heart. I am however, also  deeply saddened for HIS loss, and 'time' will never make that get better. I am grieving for children with cancer in every part of the world, The ones suffering today, tomorrow and those in ignorant bliss, who will be hit with the news next year. Should I really be putting them out of my mind or helping them?"

"Putting the past behind me, which is another comment I have also been told, is quite honestly most unhelpful and just makes me want to scream right in the faces of those who come out with these statements. People who have lost a loved one, not only can't forget about the past, but don't want to as it is disrespectful. If I was to die tomorrow, I like to hope that I was not so insignificant to my friends and families lives that they would be able to 'move on' erasing all memory of me."

At this point, I realised the postman was shifting from one foot to the other, possibly because it was blooming freezing this morning, but also because he hadn't got a clue how to respond. He then said the best thing I could have heard today which was this...

"You see that is why I don't speak to my friend any more. He lost his child four years ago, a great lad who was full of energy and makes me smile every time I think about him.  My friend and his wife are still really struggling but I don't want to say the wrong thing so I don't call."  This got me thinking and as I finally handed the signature machine back to him,and I asked him for a favour. "When you get home tonight," I replied, "please give him a ring and say exactly what you have just said to me. Tell him you were driving along and X popped into your head which made you smile. Share with him a memory you had and tell him you think about X often and you will NEVER forget him. I promise you, it might make your friend cry but will almost certainly make his night too.  Our greatest fear is that our children will be forgotten and for people to act like they didn't exist for fear of reminding us about them and upsetting us. We did not forget they died you know, but desperately and fiercely want them to continue to have an effect on those who knew them, and always have a place in everyone's heart and mind just as the living do."

I showed him a picture of Skye and we may have even hugged(!) He seemed genuinely grateful and surprised with my advice but do you know, I actually think he might just pick up the phone tonight!