You wrenched at our hearts, Steve, Looking at you in your grey skin moaning, breathing in the dead of night. We cradled you, loved you and cried helplessly at our impotence watching you in pain. You were able to look beyond your pain think of Mam, Dad, Triona, Patrick Relatives and Friends. To tell us how much you loved us with a hug what each person meant to you How close we became sharing the freedom you found with the new serenity we share the now and the past, your zest for life, vibrant colours, sports and music that brought you and your friends together with Ollie whom you called your big brother. We now lay you in Motherearth Let your free spirit stay with us always.Read at Stephen ‘s Funeral Mass, October 21st. 1991.
”Mam, they have to learn from my pain!” said Stephen Buckley
Stephen was fifteen and very tall for his age. He was born with congenital heart defects. My husband, Stephen and I shared his ‘space’ which was extremely small, for seventeen days. The room was furnished with a bed, a wardrobe, two chairs, a portable television on a small table in the corner. His wheelchair had to be left outside as there was no space in this tiny room. No space. No privacy. Only glass walls. Day after day, glass walls – a dying child on view. Day after day, thinking about death, coming to terms with death.
I did what I thought it was right to do at the time, I put my own feelings on ‘hold’ as I felt I had to be fully together to take care of my son. I felt all his needs had to be met and his feelings alone were the most important thing to remember.
When Stephen was too weak to walk, he asked to be wheeled through the corridors. Every day, every night, we walked miles of corridors, sitting on a bench or a back stairs to get a sense of quiet.
Stephen’s lungs were becoming so congested that he had to speak very slowly to tell us how angry he was, or about his disappointments in life and his love for us. He processed all his feelings to his father and me separately. Some days my husband would arrive back on the ward after being on the corridors with Steve. His eyes would be red from crying and I would know that Stephen had been letting go of his feelings. The next day it would be my turn, we would walk the corridors or I would be alone with him in his room.
We were watching the news on Television. Charles Haughey and Larry Goodman are confronted about millions of pounds that are missing. I’m sitting on a chair in this cubicle with its glass walls. This was my son’s space, my son’s last few days on earth.
A dying boy of fifteen, struggling to breathe and desperately trying to clear his mind before leaving us.
He was confronted by staff from other parts of the hospital who did not understand his special needs. Sometimes Stephen did not want to eat his dinner. He asked for what he liked to eat at home. “Why are you not eating the food we are sending up to you?” enquired the Dietician.
“I don’t like the food.” said Stephen simply.
“What do you eat at home?” she asked him. Stephen told her and she left his cubicle.
“Vampira” arrived several times with her blue box full of syringes. That dreaded “Vampira”.
“You’re a big lad now you should not cry or moan, it won’t hurt you.” she said. Today it’s two needles in his left arm.
“Ouch! It does fucking hurt!” shouts Stephen.
On another day, Steve asked to be brought down to the chapel. I brought him down, only to find to my amazement and great disappointment that I could not bring him into the church as there were six steps down into it.
“Nothing works for me, Mam!” Stephen said.
The coffee bar was his favourite place to go and have a cup of tea and look around, and we would chat. However, that last week, the coffee bar was full of smoke and Stephen would smell it as we came near. He was frightened of the terrible cough he had. He was afraid that the smoke would aggravate it and he would start coughing. I got the two cups of tea and put them on a piece of cardboard. Steve would hold the “tray” on his lap and we would sit in the main hall entrance. This was quieter than the Casualty entrance. Stephen loved it when we had it to ourselves, even if it was only for half an hour – then he asked to be taken around the corridors.
Stephen asked to see his Aunty Geraldine. As she walked into his cubicle, I was asked to leave. He stretched out his arms to hug her. With tear-filled eyes, Geraldine later told me that Stephen thanked her for all the times she cooked chips and special things for him when she baby-sat him. She was his favourite aunt – “But don’t tell the rest of them, they might be hurt,” he said. Stephen was interrupted three times by some staff opening his door and asking a question. Each time he had to draw his breath and start over again to say goodbye to his favourite aunt. We had a toddler in a cubicle beside us for 48 hours. He never stopped screaming. Stephen, trying to sleep at night, said,
“Will you let me die in peace?”
The only peace and quietness Stephen got was on the corridors, and even that was little enough. Now I understand why he wanted to be out of the ward day and night. There was so much noise and so many people.
When Stephen was directing his anger to God and asking why he was suffering, why he was dying, I was scared to tell him to scream out as I had to worry about the other children. I was frightened that, if he did not process his anger then, he would not die in peace. That emotion was the longest one we had to work through. Stephen eventually released his anger to God by reducing God to the stature of a ten-year-old who sits on a chair.
“I fucking hate you for what you put me through; twice down in that intensive care on that bed; I want you to have your heart pulled at and tubes and drains out of you. I fucking hate you!” He then gave “Him” a two-finger salute, banged his fists on his trolley, exhausted. Then he turned to me and said, “He will punish me now, Man.” I explained about relationships and he understood and slept for a while.
The last week of his journey, Steve asked for his brother and sister on their own. He gave them a few words of encouragement. He hugged them and told them how much he loved them.
Stephen’s dad slept on a mattress on the floor, the night before he died. That morning Stephen asked his father to have breakfast with him.’ Paddy replied, “I can’t son.”
Steve said, “I will ask for extra bacon and sausages and we will share it” Sure enough, he got extra bacon and sausages. He was delighted that he had breakfast with his dad. Paddy then went up to the parents’ accommodation to get some sleep and I took over as soon as Steve was washed and dressed.
When he was in his wheelchair, off we went to walk the corridors again. Several times on the corridors Steve was processing his feelings about his life but there was always the haunting sound of footsteps echoing in our ears. He would have to stop speaking to save his lungs and we would have to move to another corridor.
I had sit on a back stairs with Steve sitting in his wheelchair looking at me. He asked me to help him stand up. I did and, as I helped him, he hugged me. I hugged him back, choking back the tears. I was aware of strangers pounding on the stairs behind me. There was no space – no time for a dying child.
It was now 12.30 pm. “Mam, can I have lunch with you today?”
“I’m sure I can arrange something for you.” I said.
I wheeled Steve down to the kitchen and asked the kitchen staff. One lady kindly made a few enquiries for us to see if we could use the main dining room. It was Saturday morning and it was always quiet there then. We were refused and the kitchen lady suggested that we use the kitchen dining room. I went to push Steve in and he saw smoke.
“Ah Mam, I can’t go in,” he said. The staff immediately opened the windows and suggested we use the table at the opposite end of the room.
I left Steve at the table and went across the hall to the main dining room, got our lunch on a tray and we had it together.
“That was lovely, Mam, thanks.” I left Steve again to take the tray back to the main dining room. I was frightened, Steve’s colour was changing and I brought him back to his ward. I suggested he got into bed. He did and he died at one o’clock.
It is now six months since I left my son in mother earth and I want to scream. Why did my son have to endure lack of privacy, dignity and comfort when he was dying? Didn’t he have enough to do getting ready to die, coping with his feelings and his family?
Now crying, feeling the emptiness and the longing in my arms, the longing to hug him when he was in that small bed, as I sat sideways on his bed and held him.
“Hold me, Mam.” The blackness of the night scared him. At home his father and I took turns sleeping with him, holding him, supporting him while he coughed and dozed. I was denied all this in a hospital cubicle.
In my grief, my energy and anger are motivating me to change conditions for dying children. Separate bedrooms, to look as normal as possible, with the child’s own posters around the room, a large bed in the room that a parent can sleep on and be with their child throughout the nights. A normal bedroom with four walls – not glass – a bed for a child and parent. A table and chairs so that they can share their meals as they always did. A place where they can hug or hold when he gets scared, a place where there is a more normal routine and they can be close. A dying child wants only parents close to them most of the time. They are aware of how much time they have left. I write this with my son’s words ringing in my ears.
“Mam, they have to learn from my pain!”