It is with a broken heart I write to let you know the little warrior retired from fighting yesterday.
A few weeks short of his fourteenth birthday.
Christmas so near and yet so far.
What words can I write?
How do you come to terms with a life interrupted so young?
How can I begin to remember all that has happened since Tuesday?
How can I ever get my friend through this?
How can they live in a world without him?
It was on Tuesday that the news came that our young friend had achieved enough.
It would not be right or fair to put him in the ring to fight again.
Instead he would be given his greatest wish. What his heart really desired.
He was to be brought home.
As we cried understanding what bringing him home meant, we knew it was the right decision.
A very brave and difficult decision, made by two incredible parents.
The departure from the hospital was a gut wrenching affair.
This had been his “home” for over five months.
From early morning staff appeared to wish him well.
They came from all departments. And some even came in from their day off.
He was so happy to say “Goodbye”. Happy to be going home “for a few days”.
One of the final “Goodbyes” was from the Professor.
The man who had put his heart and soul into saving my young friends life.
The man who had to accept he could not succeed.
Thankfully for him his “Goodbye” was one of the only ones the warrior was asleep for.
The professor struggled to hold back tears as he wished them well. Tears that were remarked on, as his team had not seen it before.
But then this little boy was special.
An ambulance was parked up ready. All were aware there were risks.
Would he be stable enough to allow him travel?
Would he make the journey?
We waited with baited breath at his home, preparing the nest.
The word came, they were on their way.
Such excitement. They would soon be home.
There had been much competition on the ward over who would accompany him in the ambulance.
Eventually it was decided, and a doctor who had looked after him for oh so many days, got the honor.
She was on her day off!
With her was one of his favourite nurses, and his Mom.
As the ambulance came in the gates, hours later, we watched.
I bit my lip and fought the hardest of battles to quell my tears.
He was home.
It was wonderful, but gut wrenchingly sad. A child returning home to die.
What a rollercoaster we have been on since.
He knew he was home and had the best day on Wednesday.
His bed was brought down to the playroom. The giant TV placed on the table in front of him. His favourite pillow case on the pillow.
He woke often and as per his Mom and Dads wishes the day was all about him.
Adults sat in the kitchen chatting, whilst he lay in the playroom, surrounded by his brother, sisters, and cousins.
These were his greatest friends.
We checked in often only to hear roaring laughter, jokes, singing and chat. At times grief would spill over as they watched their young pal sleep, but it was mostly a happy day. A day when all were grateful that he had indeed made it home.
Yesterday we knew time was ticking louder. Family were called to return to his side, as he battled his final round.This time he was not in the ring alone. His Mom and Dad were by his side, ready to wave him off.
This was the saddest of days but the atmosphere was something I cannot quite describe. A family doctor came to check in at one point and he said in all his years he never saw a family like it. As our young fighter battled, over twenty voices sat around him and sang out. Just as they had on so many occasions during family parties, usually late at night!
Irish songs were their preferred choice so we heard “Óro se do bheath abhaile” sung with gusto and my favourite “Cailin Áilin”. As I stood back and watched from a distance, at times it was just too sad. I would bite my lip and avert my gaze, searching the room desperately for somewhere to look which would help me catch my breath and regain my composure. A useless exercise.
The reality of what was happening surrounded us. There was no getting away from what we were losing. Photos of family life with a very vibrant, smiling and laughing young boy were everywhere. The room itself was his favourite place and was where I had had most encounters with him. As I looked outside I saw the trampoline, where he drove his younger sister wild interfering with her as she played with friends. The basketball net and goal posts sad reminders of the sports he loved so much.
As I listened to the grief of so many young children as they sobbed, stroked his hand, hugged and kissed him I knew there was no escaping this sadness.
Finally his struggle ended and very peacefully he moved on to his next adventure at 2.20pm.
This morning I woke up to a different day. A day without wondering how he was. A day not waiting for an update.
A day without hope.
He is they say “gone to a better place”.
I hope so, because he deserves so much more than he got in the past year.
As I write this I am conscious of the number of you who shared this journey online with me. I know many of you have been thinking of him and praying for him. I say “Go raibh mile maith agaibh”, a thousand thanks to you.
Thank you all.
To my little warrior I say best wishes wherever you are. Even today in sunshine, the world is a darker place without you.
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