Unfit to Live
A Mother’s Story of Her Handicapped Son
Peter, the third son and youngest of my four children, was born on the 22nd of September, 1958, in Colombo, Ceylon. Right through my pregnancy I was sickly, and in my third month I haemorrhaged for a fortnight. The gynaecologist I consulted told me that the foetus in my womb was dead. He advised me to go home and carry on my normal duties, which would help to throw out the dead foetus. I was twenty-eight years old then, and felt horrified to think of something dead within me. I followed the doctor’s advice but nothing happened.
The haemorrhage ceased and my baby lived, to be born full term. He was beautiful. My husband and I were so proud of him! We felt an especial love for him which we could not put into words. We thought then that it was because he was our youngest child, We were to learn later that that love which was instilled into us both was the grace of the Holy Spirit preparing us for what was to come, unknown to us, filling us with courage to stand up to the trials which were to follow.
Peter was so good, so beautiful, and looked so normal, that we never suspected that anything was wrong with him, until in his seventh month he caught pneumonia. He was taken to the Children’s Hospital in Colombo. Here we were duly told that the child had suffered severe brain damage either before or during birth, and that he would never be able to walk or talk. My husband and I sat in shocked silence and could only turn to each other in our grief. The older children were four, three and one year old at the time. We decided to sell up and set out for wherever Peter could find treatment that Ceylon could not offer him.
We wrote to the Spastics Association in London and were asked to bring Peter over at our earliest convenience. We wasted no time and soon said goodbye to Ceylon. In the autumn of 1961, Peter was assessed by three Harley Street specialists. They only confirmed what the specialists in Ceylon had said. They asked that Peter be brought for assessment every three months and that he be given physiotherapy in the meanwhile. Months went by and there was no improvement. Peter did not utter one word. He could not hold anything in his little hands. He could not sit up, let alone stand or walk. Close on his fourth year we were finally told that Peter would never be cured, and that he might live fifteen years or even have a normal lifespan.
We accepted the verdict calmly, although our hearts broke inside. We were asked to consider putting the little one into one of the many good homes for spastics, but we could not bring ourselves to part with our Peter. Not a month later I learned that I had contracted rheumatoid arthritis and that there was no cure for me either. The Spastics Association offered to help in any way they could. I asked for only one favour: to be sent to Lourdes with Peter, to the famed shrine of Our Lady, where so many miracles were worked on those who invoked her aid.
I was not refused this favour, and on the 31st of August, 1962, I found myself and Peter on the train bound for Lourdes, accompanied by a nurse. I was full of hope and enthusiasm as we reached our destination, and my joy was inexpressible. We were taken to the Sisters’ Hospital close to the grotto and prepared ourselves for the great moment. Soon Peter was placed on a stretcher and wheeled away. I walked beside him until we reached the foot of the grotto. People of all denominations, of all types, were on their knees, with a hundred different afflictions, imploring, pleading, praying with arms uplifted, beseeching the Virgin Mother, asking for help. All I could feel was love. I could only kneel dumbfounded before the image of our dear Lady whom I was taught to love since childhood. Then on impulse I looked up. I felt her beautiful eyes upon me. I got up, carried my beloved Peter and went up to the grotto, only to be pushed away by a rather aggressive brancardier who mumbled something in French. I realised that pilgrims were allowed to enter only at specified times. Inside the grotto was a bishop on his knees, praying. On seeing me being pushed away he requested that I be let in. I offered a humble word of thanks for the privilege. I knelt before my Lady, held my beloved Peter up to her and told her that as so many were pleading, praying, begging for miracles, and as no one seemed to be giving her anything we would give our Peter to her; that from that day onwards we would look after Peter for her, until she came to release him from his bed of thorns. This was what we did, my husband, the children and I, with love and resignation. We also grew in love and unity with Peter in our midst. He was a tremendous source of joy and consolation, and also of heart-break to us. We learned, because of Peter, what it was to have compassion and to show kindness and love to those around us. Peter attracted many to our home, in England, later in Singapore, and finally in Australia, where we now live.
As the years went by his eyes grew more beautiful, more expressive. They showed understanding, awareness and compassion, mostly to me, as it was I who stayed with him through the day. My heart would break with love for him and I knew that he knew and understood. Yet, with the children his mood would change. He would laugh and show his delight at being with them. He would be a little child again, enjoying their company. He had the most loving smile for his father, who adored him equally. We did all we could for him and took him with us wherever we went. He was never left alone because of the bad spasms he used to get. Only we, from experience, seemed to know just how to cope with them. He was so helpless that I had to wake up at night at least a couple of times to turn and ease his little body, as he could not even do that, even were something to have stung or bitten him. All his food had to be pureed, and he would have to be fed lying down. His mouth had to be opened for him. Only we knew how to feed him water or milk. A sort of telepathy developed between Peter and me. When he was thirsty I too would feel thirsty for no apparent reason. I would take about two glasses of water before realising that it was Peter’s need I had felt. He would then be given a glass of water which he would drink thirstily. In the evenings he would wait to hear the brakes of his father’s car as he returned from work. He would get all excited as if to say he was ready to go for a drive. He would become impatient and upset if we delayed to dress him up. We would take him for a long drive into the country where we would show him God’s good earth, its green trees, the flowers, and the people and the cars moving by. He would gaze at the beautiful sunsets, maybe marvelling at the resplendent hues. By the time we reached home it would be dusk, and little Peter, tired out, would snuggle his face into my neck and fall asleep. When we put him into bed he’d heave a sigh of contentment. After that I’d feel free to relax for a while, happy that my little one had had a full day. This was the routine of his life for nearly eight years.
Peter could ask for nothing. We gave him love. He got very little else from life. But he appreciated every little thing that was done for him. We all saw clearly that even one as helpless as he could find joy in living, and in turn bring joy, peace and strength to those around him. How untrue, though perhaps well-intentioned, the words of the doctor who first diagnosed his condition: “It would be far better for their parents were such children never born”, she had remarked to the medical students standing around Peter’s bed at that time. We once tried sending him to a day school for handicapped children in the city where we live, just as we had done years earlier in England. My husband thought that a few hours’ break might give me some relief. But Peter was heart-broken at being left with strangers, however kind they were to him. He would cry incessantly until we took him away. He would, once in the car, give a sigh of relief so as to show how secure he felt once again. He could be naughty in his own way, but also knowing, understanding and loving. All his needs had to be anticipated. He was incontinent and never grew out of the nappy stage. He was ill with pneumonia six times during the course of his fourteen years, but pulled through magnificently each time, thanks to the skill and care of the doctors who attended him. Latterly, he seemed to be all skin and bone and emaciated. Yet, he was beautiful, and our children were proud of him as my husband and I were.
In 1962, at Lourdes, a Basque peasant woman had spoken to me, “He is not of this world but of another”. The truth of these words we came to realise later. On the 6th of December, 1972, Peter caught cold. By nightfall his breathing was laboured. He was removed to hospital where he was put into a croupette to help him breathe easier. It was close to the feast of the Immaculate Conception of Our Lady, the great feast of Lourdes. I felt that She was coming to take away my baby. I told the doctor so, but he assured me that all would be well. Early the next morning we were back at Peter’s bedside. He seemed much better, and on the following day he was better still. The 8th of December passed — Our Lady’s feast day. Peter was almost back to normal and the doctor told us that we could take him home after the weekend. On the 10th, I spent the whole day with him. I fed him, and his appetite was hearty. That night I gave him the sleeping mixture the nurse had prepared. My husband then gave him a drink of warm milk, cuddled him, and laid him on his bed. I tried to hush him to sleep, but he kept looking at me almost as if to thank me for being with him. Or, was he saying goodbye to me? I did not know it then. I finally placed my hands over his eyes and shut them for him. I kissed him and told him I would come for him in the morning. His lips smiled to say he understood, and in a while he was asleep. I never dreamed that he would not open his eyes again. Peter had said his goodbye to me.
On the way home I told my husband that I had a premonition of death. I did not associate this with Peter. Could one of our ageing relatives in Ceylon be ill? I tried to put the thought out of my mind, and to think of Peter’s home-coming the next day. I slept soundly that night. At 5 a.m. the next morning, there was a knock at our door. We both jumped out of bed, knowing instinctively that Peter had left us, We were summoned to the hospital where our parish priest and the night sister awaited us. The priest told us simply, “Peter is now in heaven”. Our Lady had come to take our loved one within the octave of her feast. On the afternoon of the 12th, while his little coffin lay in the cathedral, a Mass of rejoicing was offered, It was the Mass of the Angels. The choir sang the triumphant hymn of the Resurrection. Our Peter was with the angels adoring his God. What more can I say? The grief of parting we know. We miss him more than we can say, but, we do not grudge him his release from this life. We rejoice with him that he is with his Maker and the Mother of Mothers, who love him infinitely more than we his parents could. But can we ever forget this great love that existed in our lives? I think not. Its significance and Peter’s presence remain with us. In his humble, crippled, helpless, dumb way, Peter had brought many people together and many also to Christ. It remains for us to carry his message of love and compassion to those around us. It was a message he had spread in his dumb eloquence. I write this with a full heart and pray that with his help our mission, like his own, will be fulfilled. As for me his mother, my rheumatoid arthritis is still with me. I may find relief from time to time. However, the pain I shall try to endure in the proper spirit. If my beloved son could have endured a hopeless life for fourteen years with only love to keep him going then I too can do likewise. To all who loved him, and there were many who did so, to all who tried to help him in even the littlest possible way, I say, God love and keep you, and may Peter intercede for you in all your necessities. May he intercede specially for my husband and children who always loved and helped him along in every possible way, never complaining because the force of their love was too strong for that. They gave me courage, help, unquestioning understanding and love, to enable me to carry on as bravely as I could. As one dear friend wrote in condolence, we were privileged in having had Peter with us. For this privilege we give thanks to God. Indeed, as our friends realised, we too realise that in Peter there dwelt the suffering Christ.
[Irene Swan, 1973]
Published with the author’s permission in Encounter with the Aged, Little Sisters of the Poor, Randwick (No. 17,1974), and in the New Zealand Tablet (April 2, 1975).