Thursday, 11 July 2013

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.

DSC 0690  1

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.

16 comments:

  1. Nick, your words are so poignant and eloquent. I'm so so sorry for your loss. As a family you have given beautiful Adam every opportunity and done your very best. He has had in his short years what many children don't get in a life time; a family that love with all their heart. You have taught your other children and many of us who have looked on - what family, love and life is all about. Such a horrific time for you all, I can only hope and pray that in time you can remember Adam and the happy times more than the sad and with fondness and are thankful for how he blessed your lives with his presence. Rest in peace Adam and may love and peace be with you all - Adams family. xx

    ReplyDelete
  2. I've been following Adam's story since I first saw his smiling face on a poster in Epsom town centre. I'm so terribly sad to hear he has passed, he was a truly inspiring individual who redefined bravery. Your entire family is truly in my thoughts at this time. X

    ReplyDelete
  3. The sun might have been shining today but there is a dark cloud over Epsom tonight. My children are at school at Wallace Fields also. So many of us parents have been following your blog and are so sad to hear this news today. Well done to Adam for being so brave through his journey in his short life. Our thoughts and prayers are with you and your family. x

    ReplyDelete
  4. Oh God no... No words can convey how sad I feel for you right now. You were the best parents to him.

    ReplyDelete
  5. Adam and his family have been an inspiration to anyone following his/your story. You are true, real life heroes. My heart aches for you and it saddens me that there is nothing that anyone can say or do that will make it easier for you. All my love and thoughts are with you. Love from Portugal.

    ReplyDelete
  6. Adam will be forever in your heart. now without pain, without hospital, but always with love. I always notice how brightly the stars shine. My Andrew, young Felix, young Adam, neuroblastoma warriors who won the hearts of everyone they met, however brief that moment may have been. Their smiles, courage, love of life will never die. This bloody disease causes devastating loss, claims millions of tears but it will never defeat love. I don't what to else to say, take each minute, hour, day as it comes. Much love and hugs. Jx

    ReplyDelete
  7. Sad to learn of your devastating loss. May love and peace be with you and family.

    ReplyDelete
  8. I'm so sorry Nick. He's such a beautiful boy - thank you for sharing Adam with us.

    ReplyDelete
  9. All my thoughts have been with you and your family since hearing this news yesterday. Thank you for sharing your family and Adam's journey with us.

    ReplyDelete
  10. So sorry, bless you all xx

    ReplyDelete
  11. We are so sorry that you all have had to suffer so much, over the last 4 years, you have all been so brave, our hearts are with you at this very difficult time.
    With all our love to all of you.
    Jenny and John and family xxx

    ReplyDelete
  12. I am so sorry to read this. There are no words at the moment that can bring comfort but know we are thinking and praying for you and all the family. I've followed your blog for a long time and have always been amazed at Adam's strength and gorgeous smile even when things seemed so tough. Your love for him shone through every post and I send you much love at this time. Bea x

    ReplyDelete
  13. I don't know what to write but just wanted to let you know that you are all in our thoughts. When I run at Box Hill, I will always think about Adam, as he inspired 3 old guys to run further round there than we thought possible, to raise money. I always thought he was helping us rather than the other way round.
    Paul, Julie and family xxx

    ReplyDelete
  14. Nick. I have been following your families story for what seems like years. I can't remember finding it or ever not reading it. Each post has let us into your lives and home and now I sit in my office on a Monday morning in New Brunswick Canada grieving for a boy or family I never met. I will keep your family and Adam in prayers.

    ReplyDelete
  15. You and Alison are wonderful parents and I admire you so much. This post was so moving and said it all about your love for Adam I don't know you but will be thinking of you and your family. Best wishes to you all.
    Tracy

    ReplyDelete
  16. I am so sorry for your loss.

    ReplyDelete