In celebration of the life of ...

One of the most undecided things about yesterday's service was what to call it. It wasn't a funeral and neither was it a celebration. In the end, and rather at the last minute, we decided the Order of Service should carry the title 'A celebration of the life of'. It wasn't until after the event that I finally realised what the service actually was, and that there was no conflict in it; a simultaneous celebration of Adam's life and mourning of his death. Mind you, that would have been a rather pompous, and generally rubbish, title to put on an Order of Service.

For anybody who doesn't follow Adam's Appeal on Facebook or Twitter, this is his Chapel Service …

Reflections

Hey Adam,

After two weeks of not being able to think of what to say to everybody, all of a sudden it dawned on me. It’s not everybody I should be speaking to, it’s you.

I’m very proud of you son. Not for any extraordinary feat, not for achieving this, or winning that. I’m simply proud of YOU. My polite, courteous, kind, caring, loving, smiling, funny, happy, little boy. An ordinary child, with an ordinary child’s outlook on life, despite facing things no child should have to face.

You had every right to bemoan your lot Adam, and yet in four years I could count on the fingers of one hand the times you did so. It would’ve been understandable if you’d grown to hate everything you had to go through, and everyone who put you through it, and yet you never let hate enter your heart. You never envied, you never begrudged, and you never sought pity. You lived each day as best you could; and if today was a rubbish day you didn’t dwell on it, just hoped for better tomorrow instead.

Hospitals, nurses, drugs, scans, transfusions, pokes and prods ... they were a sideshow. Adam’s Appeal and publicity, that was slightly bemusing. Home, family, friends, and having fun that was the important stuff. Remember when we took you to Germany for treatment Adam? You used to cry as we drove away from the house because you were leaving Jake and Jess. We had to refer to them as Thing1 and Thing2 so you didn’t get to hear their names. More recently when you were in America, it was never long before you were ready to return home again.

Things didn’t work out as we’d hoped little man, but know that we always did the best we could, and we always did it out of love.

I knew you Adam. I had the privilege of being your Dad. Others only got glimpses, and some saw only that which I shared with them. Today is your day, and you should take centre stage. So this is my tribute to you - I hope you approve.

Love you son. Always.

Our brother … forever

Your beautiful smile
could light up the room,
like a shining beacon,
the sun, and the moon.

Your infectious giggle
and your cheeky grin.
Your tongue poking out
… well where do I begin?

Loving and caring,
courageous and brave.
You taught us all much
about how to behave.

Gadgets, light sabres,
morphers and guns,
you sure were a boy
who liked to have fun.

That fun and that laughter,
those games that we played.
I really must tell you,
I wish you had stayed.

But you'll be in our hearts,
we are birds of a feather.
Siblings together,
our brother …. forever.

They say there is a reason

They say there is a reason,
They say that time will heal,
But neither time nor reason,
Will change the way I feel,
For no-one knows the heartache,
That lies behind our smiles,
No-one knows how many times,
We have broken down and cried,
We want to tell you something,
So there won't be any doubt,
You're so wonderful to think of,
But so hard to be without.

As I've said to a few people, yesterday was not a day that any parent can look forward to. But thanks to the people who helped put together the service, and those who came and shared it with us, we will always be able to look back on the day with satisfaction and contentment knowing we did it right for our son.

Here is the message I posted on Facebook last night.

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Thank you to everybody who came today as we said goodbye to Adam. And thanks for all the messages of support that we have received. It was such a hard day, the like of which none of us have ever experienced before, nor ever wish to again. I would have liked to have gotten all my words out without breaking down, but I always knew that part was likely to get me and having written it I couldn't leave it out.

The day though hard was also wonderful in its own way. The tone was perfect, just as we had wanted it, and everybody who participated made it what it was.

To Roz and the choir for their beautiful rendition of "I wish I knew ..." and for carrying us all in the hymns, Adam and Hels for the perfect music to accompany us in and out, Lisa for preparing the order of service, Martin Ellis for playing the chapel organ, Emily for delivering Alison's chosen reading in her stead. Sincerest thanks to you all.

Thank you to Canon Esdaile who has been brilliant throughout this difficult process, helping us plan the order of service and conducting the services at the Chapel and Crematorium.

Thank you to Epsom College for not only granting us our wish to use the Chapel for Adam's service, but for providing refreshments afterwards in the College and for giving us their total support throughout.

To my wonderful daughter Jess who somehow transformed herself from an emotional wreck to a tower of strength in order to deliver her reading ... I have a heart bursting with pride. As we left the Chapel I said to her how did you do that? She gave me a nod and said cheekily 'it's a gift'. Well it's definitely something special that's for sure.

And to my little boy whose life we celebrated and death we simultaneously mourned today ... thank you for the love that will live on forever in our hearts. x"

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Sweet dreams little man. Daddy loves you so much. Always and forever. x

Service of Thanksgiving ...

A memorial service for Adam will be held at 11am on Tuesday 30th July in the Chapel of St Luke within the grounds of Epsom College, followed by a private cremation for family only at Randall's Park, Leatherhead.

All are welcome to attend the Chapel service. There is no preferred dress-code.

Refreshments will be served in the main school following the Chapel service.

We are requesting no flowers. Anybody wishing to make a donation in memory of Adam, or in lieu of flowers, is asked to do so in favour of paedeatric services (Casey and Ebbisham wards, and the community care team) at Epsom Hospital who looked after Adam with such care and diligence throughout the course of his illness.

A retiring collection will be held after the Chapel service.

Cheques should be made payable to 'Epsom and St Helier University Hospitals NHS Trust' and may be sent c/o W A Truelove & Son, 14/18 Church Road, Epsom, Surrey, KT17 4AB.

An online giving page has also been setup at http://uk.virginmoneygiving.com/adamb.

In view of the ongoing roadworks near the College, those attending the service are advised to approach from Epsom town centre and use the main entrance, or from Epsom Downs and use the Sports Hall entrance on Longdown Lane South.

I can't imagine ...

They are words you see and hear quite a lot after your child dies, in cards of condolence and messages of sympathy. Words that have a certain appropriateness, to convey how unfathomable it all is.

"I can't imagine …".

To those who have used such a phrase, I can confirm what you already knew.

I know this to be true because I myself could never have imagined. I never understood. For as long as I stood on the precipice, knowing each day was a day closer to losing my precious child, I had no idea it would feel like this when Adam was actually gone. I couldn't imagine for one reason alone — he was still with me. You can try to imagine all you like — at times you cannot stop yourself in fact. You can have dark thoughts in your head; they may consume you at night as you drift into sleep, and still be there when you wake in the morning. But these are your fears, they are not your reality. As much as it feels real at the time, it's not. Not when your child is still there, to talk to, to touch, to love, to adore. Not when your child is still there for you to wake up to.

When you know that you have kissed them goodnight for the last time; will never again hear their voice, feel their touch, hold their hand, smell their essence. When all you have left to look at are photographs. When all you have left to talk to is an empty space, or a once treasured something. When there is no more making new memories, only hoping you won't forget old ones. When you think of things you wish you'd done, or said, or taken care of — stupid little things much of the time — and know you're never going to have that chance. When nothing you can do or say can ever change anything. When you no longer have fears only absolutes. When there is nothing left to imagine. When this is reality, from now until your own dying day. Only then do you understand.

The End ...

This morning at five minutes after nine, lying in our bed at home as we held his hand, stroked his hair, and told him we loved him, our beautiful little boy Adam took his last breath and left this world. He will live on forever in our hearts.

I wrote the following a few days ago, but never got round to publishing it …

Letting go …

Monday 8th July

For reasons I do not fully understand an odd sense of calm has descended upon me these past few days. I think perhaps I have finally come to realise, understand, and begin to accept.

There is a time to fight, and we did that, for as long and as hard as we could; perhaps too long though I don't believe so.

There is a time to hold on, to focus on taking out of each day whatever you can within the limits of what circumstances will allow. We've been there a couple of times. After Adam completed immunotherapy, before a single suspicious lymph node was revealed to be the pre-cursor to full-blown progression. And just recently whilst Adam has been comfortable at home, and we've been able to enjoy simply being in his company each day, overlaid with occasional special moments like our trip to Harry Potter Studios, and the school Tombola.

And then there is a time to let go … and now is that time.

It may seem a bizarre thing to say, but I actually feel fortunate right now. In the context of what we are facing to have had the time that we have, over two months of it, with Adam free of pain, lucid and coherent, has been more than we could have dared hope for. That's not to say it's any easier, or less traumatic, or our hearts are any less broken, or there isn't a constant undercurrent of tears in my eyes ready to burst forth at any given moment. But we have been afforded something that many are not, and as a consequence I've gained a perspective that I otherwise wouldn't have.

We have decided the time is right to stop taking Adam to hospital to receive blood transfusions. It's better that he stays at home where he is comfortable, and we continue to care for him as best we are able. Whilst I have no idea precisely what the coming days will hold, my one fervent wish is for Adam to remain comfortable and without pain.

From the very start of this journey, Alison and I have always done what we believed was the right thing for Adam, for the right reasons. So I can't now allow myself to be the cause of unnecessary suffering through my own selfish (though perfectly natural) desire for Adam to remain with us for as long as possible. Letting go, not giving up. Letting go … the easiest thing of all … and the hardest thing of all.

Return of the Tombola ...

Well, I don't entirely know what to say other than an enormous thank you from the bottom of my heart to all you lovely people who ensured that, as a (very welcome) new addition for 2013, there would be a jar tombola at the junior school's celebration evening.

When I woke Adam up just after 4pm and asked him whether he wanted to go (having changed his mind several times during the course of the day), he said he was too tired and didn't think he would. But it was a rather equivocal no, and so me being me, I gave him a gentle nudge … and he changed his mind again! We agreed a plan; drive up, get there early, spend a couple of quid, make sure he won something, and be home again in half-an-hour …

… or not. We parked his chair in the middle of the stall, and there he remained for the next hour. Studiously examining the jars until he found one (or several) that he liked, then draining the contents of my wallet until he'd picked out enough winning tickets to add them to his collection.

I don't know how many sweets he'll actually eat, though I'd wager not that many. I don't even know how many jars he'll open. We could end up spending longer tomorrow sorting sweets than we did today winning them. Equally they could remain untouched in the bag that we brought them home in.

It doesn't matter.

For two hours today Adam was joining in (well actually he was hogging most of the stall), and having fun. In all likelihood he would have refused to go had he known it was instigated for his benefit.

So thank you friends, know that you did a lovely thing. It's too hard for me to describe what it was like to see Adam go along today and really enjoy himself. I can't lie to you and say my heart was full of joy, how can it ever be? But that's alright, it wasn't about me. I can say that today I have experienced something other than sadness and anger. I was happy for Adam, and I was happy for you all too.

And now I must go and wipe my eyes — I seem to have a touch of hayfever all of a sudden.