This article appeared in the August 1997 edition of the Catholic Medical Quarterly
TOM, YOURE A STAR
In deep appreciation to Rob, Glen, Tim, Kate, Lucie and Alain for sharing Tom with us
died 29 September 1995 aged 19 years
He was a winter baby
Entering our lives like a night fall of snow,
Changing our world completely;
Peaceful and calm, wrapped warmly
Like the secret earth beneath the leaves
In a dark wood on a cold night.
He was a springtime child
Budding and growing like daffodil spears,
Opening our ears, our eyes and our minds;
Vibrant and bright, reaching out
In so many questions with not enough answers,
Like new birth leaves unfurling to seek the sun.
He was a summer youth
Radiant and glowing like yellow sunflowers
Enhancing our view of God's beautiful world;
Wide-eyed and joyful, filled with delight,
Drinking in knowledge, revelling in life
Like a basking lizard storing up heat.
He was an autumn man
Fading and failing, but now fully ripe,
Shedding and losing the things of the World;
But mellow and golden, quite ready
Like a glowing plum on a laden tree,
Ready, ready, waiting for the harvest.
Tom died in Francis House, our local hospice for young people with low life expectancy. He was nineteen. For most of his life he had been severely and increasingly handicapped by Duchenne muscular dystrophy. A few days before he died, he asked his guardian angel what his name was and heard, quite clearly, the still, small voice replying that it was 'Christopher'. When told that the name means 'Bearer of Christ', Tom was very moved, and Christopher became his close friend in his last few days.
We all knew that Tom would not be with us much longer, including Tom himself, but we did not know that this was to be his last day. His brother Tim, his sisters Kate and Lucie, Kate's husband Alain, Glen and I were sitting at the big table in Francis House. Tom was lying on the couch in the adjoining room, some distance away.
I shared my profound admiration and respect for Tom. He was a remarkable, even saintly young man, in a completely unselfconscious, non-pious way. It must be extremely rare, for the father of the family to have learned far, far more from the son than the son had ever done from the father. His bravery and cheerfulness, his sharp wit and irrepressible humour, his lack of any bitterness or resentment at his disability were an inspiration and shining beacon to everyone, In spite of his terrible handicaps he had always been by far the most content, well-balanced of all the Aston clan. His spirituality was completely unforced and was not artificial. His was a natural, loving and personal relationship with his Creator, epitomised by his response to the presence of God in nature. For Tom to observe a flower, or a bird, beetle or spider, was for him to enter into wordless conversation with his Lord. He had remained loyal to his Lord, sometimes in spite of mockery and taunts from others. He was, in the best and truest sense of the word, a righteous and just man.
Tom, feeling a lot better now and noticing that the sun was shining and the day was beautiful, suggested that we went outside. We put him in his electric wheelchair and followed him into the garden where we spent the most idyllic half hour together. He trundled round the patio with his usual good humour, admiring the plants and striking yellow roses. Bees buzzed on the lavender and Tom, referring to a conversation on existing and doing, punned that they were just 'beeing bees'. I picked some lavender and rosemary, crushed the leaves and held them for him to smell. He loved these scents and asked me to take some inside. He found them comforting.
WHAT IF IT'S REALLY BAD
Back in the house he asked to talk to me. He was dreading the coming night, feeling that he did not know how to cope if he was to have the distress and fear of the previous night. It was clear, though, that he was not referring to fear of death itself, simply to the shortness of breath, the rattle in his windpipe and the sensation of choking. I tried to reassure him that there was really very little, if any, phlegm on his chest, that the rattle was just a little obstinate mucus in his windpipe and that it would, in itself do him no harm. 'But, dad,' he said; his big eyes searching my face. 'What can we do if it's really bad?'
I told him that I knew how awful the previous night had been and that we would be with him, that there was no need to worry unduly because we had discovered, during the night, how to relieve the symptoms. He would be in total control. We now knew that any distress could he relieved by dosing him with oxygen, morphine and the rosary! He thought for a moment with brow furrowed, then smiled. 'I'll have the oxygen and the rosary but you can forget the morphine,' he said. He had tried morphine for the first time during the night but had disliked the consequent muzziness and loss of control. Then, as usual after discussing a problem, he changed the subject. 'Play the piano for me, dad,' he said. These abrupt changes in the content and emotional level of our conversations were a demonstration that he was reassured, and reflected a real desire not to distress me. Such was the depth of his wisdom, his spiritual maturity and his love for us.
OUR LAST TIME TOGETHER
We all watched 'Nightmares of Nature' on television. This was a time of delight and, along with the afternoon walk round the garden, was one of our happiest memories of Tom's last day. His avid interest in natural history had always been matched by a humorous delight when there was an added dose of grisliness or the macabre, and he was in his element. He laughed in his silent way till tears came to his eyes, and he pulled his face in grimaces of gleeful disgust. It was our last time together as a family and it was a very happy occasion. The whole day had been one of our most joyful.
After the programme, Tom asked to go to his room and listen to some music. He chose one of his many favourite pieces, Rachmaninov's Second Symphony. As I put the CD on, Glen went to have a bath and Tom and I sat contentedly together. We did not speak but simply sat together, he in his chair and I on the bunk, father and son. We let the inspired music flow over and into us and occasionally smiled at each other. Later, Glen reappeared and sat with us till the end of the movement. Tom looked at us thoughtfully. That's wonderful, wonderful music,' he said.
'IT COMFORTS ME'
Carol and Shelia, the night staff, had come on duty and helped us to get Tom ready for bed. As he sat up in bed, the rattle in his windpipe was audible again and he was somewhat concerned, remembering his struggle the night before. We offered him two Valium tablets, suggesting that they might just help him relax and sleep, and he accepted those. Offered morphine, he declined, politely but firmly. Having always been in control of his life he was determined not to lose it now. Morphine, as he had discovered, made him feel he was not master of himself. 'Let me have my smelly plant', he asked. 'I want it here under my nose so that I can really smell it. It comforts me'. Glen, exhausted, was persuaded to try to get some sleep. I would stay by Tom's side and let her know if there were problems, or if Tom needed her. She went off to the flat and immediately fell sound asleep. Tom did not settle and, in spite of the oxygen which helped his breathing, he was restless and still concerned.
I suggested that he might try to lie down on his side, because he had been sitting up for a long time. He knew that his lung function was now so poor that lying would probably result in gradual loss of consciousness and herald the end of his life. Assuring him that I would stay with him and stay awake, I lay on the bunk near his bed and continued my prayers. It was past midnight.
THE HEALING OF MUSIC
After a while, Tom tried to clear his throat and I went to him. I did not want him becoming distressed and anxious. Carol was with us. 'Would you like some morphine, Tom, my love?' l asked him, but he shook his head and patted his chest. This meant that he wanted me to clear his airways by physiotherapy. After a few minutes of this he felt easier, though there really was nothing to come up. The effect was psychological rather than physiological. I asked him if he would like some more music to help him relax and go to sleep. He chose a CD of Delius. I lay down again and Carol stayed near him on the other side of the bed. Tom began to cough again and I got up. He looked at me, his beautiful, big eyes shining at me in the half dark, though there was no sign in them of alarm or distress as there had been the previous night. He patted his chest and l started with the physiotherapy.
'I BELIEVE YOU. DAD'
'Tom, my friend,' I said after a few attempts. 'I really don't think this will help you. Remember what we said yesterday - try to accept that the rattle itself won't hurt you, and relax. Just have faith and trust.' 'I believe you, Dad,' he said. 'I know that's right.' These were his last words. With his right hand he indicated that he wanted to lie flat and turn on to his right side, then he operated the switch to lay the top part of the bed flat. We turned him on his side and Carol assured him she would stay and hold his hand until he fell asleep. I told him that I would lie on the couch and stay awake. In the half darkness, with Delius' music playing gently, I listened to my son's breathing. As the music was finishing, the rhythm of Tom's breathing suddenly changed. As a doctor, but more as his father, I recognised the change instantly, as a major one. I jumped from the bunk and went to him. He had moved effortlessly and quietly from sleep into unconsciousness, his breathing now stertorous. I lifted him to a sitting position. 'Go and bring Glen, quickly!', I said to Carol. Still holding Tom, who was deeply unconscious, I found the control switch and raised the head of the bed. His heart beat was racing and feeble: I knew he was dying. Suddenly, I vividly recalled Tom's look of calm understanding when he had gazed at me a few minutes before and his last words, 'I believe you, I know that's right.' I now knew what he meant. He had chosen the time himself. He knew that lying down would probably result in loss of consciousness and death and had chosen to accept that that time had now come. Without fear or fuss, with his faith and trust radiant to the last he had followed his Master's example on the cross. His Master had bowed his head: 'It is finished. Father, into your hands I commend my spirit'. 'Tom', I said, 'I love you very much.' I knelt on the floor and held him. He was deathly white, his breaths coming in regular gasps.
'Lord Jesus', I prayed, 'have mercy on him. Please comfort him and, above all, let his going be peaceful and without pain or distress.' I spoke words of love and admiration to my unconscious son, nonsense words and words that were special for the two of us.
Glen appeared at the door, only half awake and supported by Carol. 'Tom's going, Glen', I said. She burst into tears and came to the other side of the bed. She looked at her son in my arms, pale, unconscious and helpless and within seconds dried her tears. 'Stop this' she told herself sternly. 'Crying and emotionalism are the last things he wants now.' We held him between us. We asked Carol to phone the other children and to contact Father Tom, the chaplain and Tom's friend. He had received the Sacrament of the Sick only a few hours previously and was fully prepared for death. If only we who remain can be so ready and right with our Saviour when our turn comes! As we knelt there, a great sense of joy and peace came down on us. Our minds cleared and our hearts filled with love as we talked and prayed with him. 'My beautiful, beautiful son' Glen assured him repeatedly, 'I love you, Tom, you are a star. . . .'
HE KNEW IT WAS TIME
Glen began to recite Tom favourite psalm - psalm 90 - from memory and, after a while, l joined in with her. It is a wonderful psalm from the Night Prayer of Sunday and is full of loving trust in God.
He who dwells in the shelter of the Most High
And abides in the shade of the Almighty .....
For you he has commanded his angels
to keep you in all your ways .....
Somehow, it summed up the essence of Tom's existence. During our family retreat with our beloved Cistercians on Caldey Island, Tom had unfailingly attended night prayer. Over the years we had often said and sung night prayer as a family and we knew it all by heart. We continued:
I will lie down in peace and sleep comes at once
for you alone, Lord make me dwell in safety, (Ps. 4)
On the evening before we had come into Francis House, Tom had spoken gently and lovingly about his death and his concept of heaven. He had known that it was nearly time for him to leave us. I had brought with me a book of prayers for the dying and I read a prayer of Newman:
support us all the day long....
Then Lord in your mercy
grant us a safe lodging,
a holy rest,
and peace at the last....
It was clear that he was close to death. We both thought he would simply breathe his last and leave us, but after a few minutes, he stirred and took a deep breath. Colour quickly returned to his face. Glen had a brief moment of panic, thinking that he was going to start to fight again, but that was not Tom's way, nor his intention. He struggled back to consciousness opened his eyes, and held himself with us by sheer force of will. Slowly he turned his head towards me, raised his eyes to mine and focussed them carefully. He held my gaze, eye to eye, burning love to burning love, son to father. Then, he turned his eyes to his mum and gazed his last look of love and peace directly into her eyes. His thin, exhausted, but now life filled face relaxed; he closed his eyes. He was at the very point of death.
.... In the name of the Holy Spirit
who has poured out upon you.
Go forth faithful Christian .....
WHAT A PRIVILEGE
As I recited the great prayer of commendation for our dying son, I was aware of the great privilege of us being there and able to perform this service for him. It was, of all the moments in my life, the one in which I had the most profound sense of being father of my family. As I prayed, I thanked God and Tom for giving me this honour. We prayed the 'Our Father' together. He gently breathed out and made no effort to draw another breath.
'Saints of God come to his aid!
Come to meet him angels of the Lord! ..... .
I glanced at my watch. It was half past one in the morning. Tom took no further breaths. His heart was beating faintly but clearly and, for the first time for years, was beating calmly and steadily, without the irregularities which his condition had inflicted upon him. The rosemary lay in his lap. Tim and Lucie appeared. I smiled at them both. 'He's gone,' I said gently. Lucie perched on the side of Tom's bed next to me. Tim went to stand by Glen and laid his hands on Tom's shoulders. Tom's heart steadily weakened, Kate and Alain arrived and wept silently. Then together, from memory, we all sang Tom's favourite plain-song - the solemn 'Salve Regina'.
Our precious son and brother, this great gift of nineteen years, had moved on. At this very moment his poor body, which had been his cross for so long, was walking and skipping, wide-eyed with wonder, into light and joy beyond our earthly imaginings. Such curiosity to be satisfied, such delight still to be discovered in God's creation, such rejoicing with Christopher, his own angel.
This is an earlier paper on which Dr. Aston's talk at the 1997 Guild Symposium was based.
Dr. Aston is consultant in Communicable Diseases, Wigan & Bolton Health Authority.