Leaving Leeds and living differently
When we talk about those few weeks in Leeds and look back it's hard to imagine how we got through, and many times people have said they don't know how we coped. The answer is always that we had no choice. What else could we do but keep going? Joe needed us, our other children needed us, our grandson and other family members needed us. Giving up wasn't an option.
In the early hours of the 14th March, 2012 however, we came very close to collapse. Shortly after Joe died, Hannah and her colleague removed all his medical devices so we could come back and say a final goodbye without having to battle round it all. When we were eventually allowed back by his bedside all the tubes were gone and we could give Joe a hug, unencumbered by tubes, needles, dialysis machines and all the other medical paraphernalia that had punctuated his life in the last few weeks. Quite a few people took the opportunity to sit with Joe one final time. His girlfriend, Liv, and his sister, Beth sat with him together for quite some time. Others said quick goodbyes as it became too much. Anna and I took some private time to be with him without other people, but eventually we knew we had to leave the hospital.
Leaving the hospital knowing that we would never again come back and see Joe was heartbreaking. We were, drained, exhausted, distraught and disbelieving, at a loss to understand how this had happened. We still don't know for sure. We have found out since - after a meeting with his doctors in October - that they think Joe had an adverse reaction to a one off drug given in theatre. They have never seen this before and the only reason they have opted for this explanation is that there is one other case in the world where someone seems to have reacted in this way in similar circumstances. This person survived; so the awful truth is that it appears that Joe is the only person doctors have ever known to have died in this way.
We had started out with such hope on that freezing evening in February when we got the transplant call and now, here we were, in the early hours of the morning, only 5 short weeks later, devastated at the loss of Joe. I wasn't sure I could get Anna to go, and her sense that she was abandoning her beloved child almost tipped her over and me with her. At that point the urge to tear up the ground we were walking on and scream until we could scream no more was almost overwhelming. We wanted to sit on the floor and refuse to leave until someone, somehow, brought him back to us. We didn't, of course. We carried on walking out of the hospital, out into a world that had been irrevocably changed. W.H. Auden's Poem, Funeral Blues says what we felt in so many ways:
Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone.
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.
Let aeroplanes circle moaning overhead
Scribbling on the sky the message He is Dead,
Put crépe bows round the white necks of the public
doves,
Let the traffic policemen wear black cotton gloves.
...
Go and read it all, it's fabulous. The death of someone we love is something so intense that it just feels incongruent that the world carries on as before. I was only thirteen when my sister died but I still have vivid memories of my feelings at the time. The utter powerlessness of not being able to do anything. I wanted to make it not true. I wanted to go back to that morning and change the sequence of events so she could live. Most clearly of all I remember watching other people going about their normal business and feeling disbelief. When my mum died I felt similarly. How, when I was so devastated, could people still be smiling, arguing, worrying about minor things? How could the sun still feel warm and the sea look so beautiful? I wanted acknowledgement of my grief from the earth itself.
When Joe died, and indeed when a month later my brother Mally died, I knew not to expect the rest of the world to stop turning. I knew that the cold morning marked the end of a world we had known. The clocks had stopped for us temporarily, and we were now at the beginning of a new world that would be a very different place for us to live. I knew that the rest of the world would carry on much as before. I knew that we would get through it, because there was no other choice.
There are other things I know that were confirmed for me when Joe became so ill and died. I know that the doctors and nurses were amazing and did everything they could. I know that they never gave up and they cared for us as well as for Joe. I know the NHS is stretched to breaking point but offers astounding care. I know that what happens in life makes no sense most of the time. I know that the world lost a good person in Joe.
Because of Joe's condition: because of his own understanding of how much organ donation meant; and because of his own empathic personality, Joe had always said that if he didn't survive he wanted to be an organ donor. Anna was determined to try to honour his wishes. The hospital left a message for the transplant coordinator and we were to expect their call in the next few hours. We knew that he couldn't donate some organs because of how ill he had been but there were certain things that may be useful . We felt it was important to try because Joe was a giving person and even at the thought of his own death still had time to consider how he might contribute. I don't want to fall into the trap of somehow deifying him. It's too easy in one's natural desire to speak well of the dead to turn that person into some kind of saint. Joe was not a saint. He was a well-rounded, normal boy with everything that goes with that, including being a stroppy teenager at times. Nevertheless, he was a very caring boy who made friends easily and was interested in others. The outpouring of grief when Joe died is testament to how much Joe was loved. Not just by his family but also by his large group of friends. These friends organised a balloon release to mark his death. Hundreds of teenagers turned out for this and it was a beautiful sight. The minister who conducted his funeral called it post-modern prayer and I think he is probably right. It was their own spirituality, it was their way of saying we love you to Joe.
We are now learning to live differently. It isn't easy but we are doing it. We have struggled a lot and what's happened has left its legacy; as these things always do. Given our family history we have for a long time needed to reassure ourselves that people have arrived safely, if we hear an ambulance we need to know where everyone is. Now we worry even more and have to keep checking on each other. Has Tracey got to work okay? We haven't heard from Robbie in a while. They know why. Through it all what has kept us going is the strong relationship that Anna and I are lucky to have and the closeness of our family. We still miss Joe every day, he will always be part of that close family and he will never be forgotten.
In the early hours of the 14th March, 2012 however, we came very close to collapse. Shortly after Joe died, Hannah and her colleague removed all his medical devices so we could come back and say a final goodbye without having to battle round it all. When we were eventually allowed back by his bedside all the tubes were gone and we could give Joe a hug, unencumbered by tubes, needles, dialysis machines and all the other medical paraphernalia that had punctuated his life in the last few weeks. Quite a few people took the opportunity to sit with Joe one final time. His girlfriend, Liv, and his sister, Beth sat with him together for quite some time. Others said quick goodbyes as it became too much. Anna and I took some private time to be with him without other people, but eventually we knew we had to leave the hospital.
Leaving the hospital knowing that we would never again come back and see Joe was heartbreaking. We were, drained, exhausted, distraught and disbelieving, at a loss to understand how this had happened. We still don't know for sure. We have found out since - after a meeting with his doctors in October - that they think Joe had an adverse reaction to a one off drug given in theatre. They have never seen this before and the only reason they have opted for this explanation is that there is one other case in the world where someone seems to have reacted in this way in similar circumstances. This person survived; so the awful truth is that it appears that Joe is the only person doctors have ever known to have died in this way.
We had started out with such hope on that freezing evening in February when we got the transplant call and now, here we were, in the early hours of the morning, only 5 short weeks later, devastated at the loss of Joe. I wasn't sure I could get Anna to go, and her sense that she was abandoning her beloved child almost tipped her over and me with her. At that point the urge to tear up the ground we were walking on and scream until we could scream no more was almost overwhelming. We wanted to sit on the floor and refuse to leave until someone, somehow, brought him back to us. We didn't, of course. We carried on walking out of the hospital, out into a world that had been irrevocably changed. W.H. Auden's Poem, Funeral Blues says what we felt in so many ways:
Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone.
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.
Let aeroplanes circle moaning overhead
Scribbling on the sky the message He is Dead,
Put crépe bows round the white necks of the public
doves,
Let the traffic policemen wear black cotton gloves.
...
Go and read it all, it's fabulous. The death of someone we love is something so intense that it just feels incongruent that the world carries on as before. I was only thirteen when my sister died but I still have vivid memories of my feelings at the time. The utter powerlessness of not being able to do anything. I wanted to make it not true. I wanted to go back to that morning and change the sequence of events so she could live. Most clearly of all I remember watching other people going about their normal business and feeling disbelief. When my mum died I felt similarly. How, when I was so devastated, could people still be smiling, arguing, worrying about minor things? How could the sun still feel warm and the sea look so beautiful? I wanted acknowledgement of my grief from the earth itself.
When Joe died, and indeed when a month later my brother Mally died, I knew not to expect the rest of the world to stop turning. I knew that the cold morning marked the end of a world we had known. The clocks had stopped for us temporarily, and we were now at the beginning of a new world that would be a very different place for us to live. I knew that the rest of the world would carry on much as before. I knew that we would get through it, because there was no other choice.
There are other things I know that were confirmed for me when Joe became so ill and died. I know that the doctors and nurses were amazing and did everything they could. I know that they never gave up and they cared for us as well as for Joe. I know the NHS is stretched to breaking point but offers astounding care. I know that what happens in life makes no sense most of the time. I know that the world lost a good person in Joe.
Because of Joe's condition: because of his own understanding of how much organ donation meant; and because of his own empathic personality, Joe had always said that if he didn't survive he wanted to be an organ donor. Anna was determined to try to honour his wishes. The hospital left a message for the transplant coordinator and we were to expect their call in the next few hours. We knew that he couldn't donate some organs because of how ill he had been but there were certain things that may be useful . We felt it was important to try because Joe was a giving person and even at the thought of his own death still had time to consider how he might contribute. I don't want to fall into the trap of somehow deifying him. It's too easy in one's natural desire to speak well of the dead to turn that person into some kind of saint. Joe was not a saint. He was a well-rounded, normal boy with everything that goes with that, including being a stroppy teenager at times. Nevertheless, he was a very caring boy who made friends easily and was interested in others. The outpouring of grief when Joe died is testament to how much Joe was loved. Not just by his family but also by his large group of friends. These friends organised a balloon release to mark his death. Hundreds of teenagers turned out for this and it was a beautiful sight. The minister who conducted his funeral called it post-modern prayer and I think he is probably right. It was their own spirituality, it was their way of saying we love you to Joe.
We are now learning to live differently. It isn't easy but we are doing it. We have struggled a lot and what's happened has left its legacy; as these things always do. Given our family history we have for a long time needed to reassure ourselves that people have arrived safely, if we hear an ambulance we need to know where everyone is. Now we worry even more and have to keep checking on each other. Has Tracey got to work okay? We haven't heard from Robbie in a while. They know why. Through it all what has kept us going is the strong relationship that Anna and I are lucky to have and the closeness of our family. We still miss Joe every day, he will always be part of that close family and he will never be forgotten.
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