No One Wants You (30 page)

The next afternoon I left him playing in the ward, while I went home to get him some clean pyjamas.

When I arrived home, I called Kit and told her that Ronan was in hospital. She was surprised. ‘Shure, he’ll be grand, isn’t he a real tough little man,’ she assured me.

When I returned to the hospital the doctor was waiting to see me. He said to me, ‘While you were away, Ronan walked into a door. It was as if he had not seen the door, have you ever noticed such behaviour before, Celine?’

‘No,’ I replied, trying to remain calm. But it was as if he touched a panic button in my brain. I looked across at Ronan who was in a bed beside the doctor. He suddenly looked very pale to me and he had a tiny nosebleed.

They decided that he should be transferred to Great Ormond Street Hospital for Children because he should have a scan done on his brain. Once I knew that he was having a brain scan, I knew that it was very serious. I rang my mother.

She said to me, ‘I went through that with all of my children.’

‘You may have been through it but not with ALL of your children,’ I thought. Even in the middle of the crisis it hit me that she did not think of me as one of her children. I really needed some support but she was very offhand with me. It was her way of dismissing me. She was so snappy with me, that I quickly ended the call.

Next morning after work, I took my baby for his scan. Harry had gone into work like normal and we had sent Anthony back to school, as we didn’t want to worry him. The scan did not show any abnormality, so the paediatrician said that maybe Ronan had had a small stroke.

I was not convinced and I was also puzzled. I was getting very frightened as well. By the end of the day Ronan was
dragging
his right leg noticeably. His co-ordination was not as good on his right side as on his left. When they were doing his neurological checks, his finger-to-nose co-ordination was not as accurate on his right side as it was on his left. It was slower. He was discharged after a week and they said that he would be okay.

As I brought him home, I was unhappy about the findings and the dismissals. For a boy who loved his food, he was not eating as well as he used to. I also found that his speaking volume was lower. He did not have the same strength in his voice.

Harry had asked our parish priest to call and see Ronan. I wanted him to bless Ronan. I think that the priest thought that I was being hysterical. Maybe I gave him the impression that I thought that he had some magical powers of healing. I felt that he was unsympathetic, especially when he left without giving Ronan a blessing.

As the days went by and Ronan didn’t go back to normal, I felt that everyone thought that I was overly concerned. Harry’s brother even said, ‘Oh, he’ll be grand, when the fine weather comes, he’ll be able to kick a football. His leg will get stronger.’ But I thought, ‘Ronan has never been sick, not even the flu, even though he was always trying to take his clothes off when he was younger.’ He was always stripping off his clothes. He hated wearing them. Even if we were at someone else’s house, if he thought that I was not looking he would start stripping off his clothes. Other kids used to dive on him and try to stop him when they saw him start to strip, so he became expert at doing a full strip in an extraordinary short space of time.

There was no change during the week at home. I took him back to the doctor and he contacted Great Ormond Street. They said, ‘Bring him to outpatients.’ They did the usual full range of blood tests but there was nothing conclusive from the results.

‘It must be a virus that has attacked the brain. It could take a long time, but he will get better,’ they surmised.

I took him home again.

Next day his temperature rose significantly. It remained like that for 90 minutes. Then all of a sudden it dropped back to normal. It stabilised at normal and remained there.

I was not one bit happy.

He seemed like a very sick little boy for an hour and a half and then, in the twinkling of an eye, he became a normal little boy. He behaved as if nothing had happened. I gave him Phenegran, a mild children’s sedative. After that day his temperature stabilised. There were no more fluctuations. But then his sleep patterns changed.

He would sleep for an hour. He would be awake for an hour.

He would sleep for six hours. He would then be awake for six hours, almost to the minute.

He would sleep all day and then he would remain awake throughout the night.

This was into the third week – the end of January 1986. I was a wreck, both mentally and physically. I could not interpret the symptoms. They were random and disparate. I rang the doctors’ surgery. The receptionist said, ‘Bring the child to the surgery.’

‘There is no way I am bringing my son to the surgery in his condition. Is there any doctor there that knows what he is doing? Is there any doctor there that knows anything about children, because my child is very ill and nobody believes me or understands.’

She said that she would arrange for a doctor to visit the house. He arrived at our house about an hour later and began to carry out all the usual checks.

I stopped him before he finished. I said, ‘Just sit there and watch my son walking.’

I made Ronan walk across the floor in front of him.

He said, ‘I totally agree with you, Mrs Roberts, there is something seriously wrong with him.’

I thought, ‘For the first time, here is a doctor who agrees with me about my son’s condition. Here is someone who is prepared to empathise with a mother’s experience.’

He referred him back to Great Ormond Street.

This was on a Thursday.

They agreed to take him in on the Saturday morning.

When I told Ronan that he was going back to hospital, he just said ‘Okay Mum, but I want my Thomas the Tank pyjamas this time.’

By the time we got to the hospital, Ronan’s condition had deteriorated. He was very sluggish. The day before, he had asked me to make him some gingerbread men. I was not able to bake them, as I had no ginger. When he was installed in his hospital bed, in a gown because of his condition, I rushed to Harrods’ department store to buy him gingerbread men and fresh orange juice. I rushed back to the hospital and he ate them all. Later on, his swallowing became impaired.

He was still up and about the ward at this stage, but he was slow and dragging his leg. When they were checking him, they still said that they could not find anything wrong. They even repeated the brain scan.

Nothing showed up.

They asked me about his right eye, because they found it dilated. I said that I had noticed that his writing had altered. They got a teacher to assess it. She reported that she did not see any change!

I was stupefied. I felt it was not a fair assessment. I knew my son’s writing like nobody else could.

One whole week passed, running more tests, doing X-rays and waiting for results. Ronan was getting tired of being in hospital and even all the visits from Harry, Anthony and Thelma, and me staying with him as much as possible, didn’t cheer him up.

On a Friday morning they decided to take him to theatre because he always had a trickle of blood from one nostril. They thought that he might have some adenoid trouble. When he came back, they had removed some adenoid tissue but generally had found everything in good condition.

That afternoon Lucy came, and that evening our friends Barry and Angela Molohan arrived. They all told me to go home and have some rest. Harry had given up trying to get me to leave.

I just said, ‘No.’ I knew that there was something very wrong. I was panicking in my head. We did not have a diagnosis and I knew he was seriously ill. We were not getting anywhere with the results. We were no further on. We still had no definite diagnosis.

It was fairly obvious to me, by now, that it was something cerebral. The consultant also thought the same. He recommended a three-dimensional MRI scan of the brain. This was because of the type of intermittent morning vomiting, coupled with the other outwardly visible neurological signs. After he had the scan, it took a few hours for the results to be interpreted. When the diagnosis arrived it was definitive. Ronan had an inoperable brain tumour. It was the size of a golf ball and growing. I was told that no surgeon would attempt to remove it due to its inaccessible location.

On receiving this news, the survivor in me took over once again.

The staff had provided me with an armchair-type cot bed beside Ronan. I think they knew without me telling them that I was not going to leave him, not for one minute. At night, to be comfortable, I took off my blouse and sat there in my skirt and slip watching Ronan. One night around midnight, he opened his eyes and a tear formed in his left eye and fell on to his cheek.

I said, ‘It’s all right darling, Mummy’s here and I am not going home. Go to sleep.’

There was something about the way he looked at me. It filled me with fear that something was going to happen. It was as if he was confirming my own fears that something major was wrong.

He appeared to go back to sleep.

About an hour later, he turned over slowly on to his back. Then from a prone position at the top of the bed, with his head on the pillow, he did a complete somersault through 180 degrees, rising about two feet in the air and landing at the bottom of the bed, with his head at the end-rail.

He was still asleep, as if nothing had happened.

It happened so quickly.

Throughout my entire nursing career, I had never seen it happen before.

I was really scared and I called a nurse over. Four nurses and a doctor came. They all agreed that he’d had some kind of fit. They left and said to me to continue to observe.

About two hours later, I realised that his breathing had changed. I put on my blouse.

I realised that he had just had a cardiac arrest and I called the nurse again. She was an agency nurse and I realised that she lacked experience of cardiac arrest procedure. I helped her to put an airway into my own son. I was able to help her for a while. It was as if I had isolated myself.

I began to panic for a doctor to come and, after what seemed like an interminable wait, one arrived. They started working on Ronan. A care worker took me to another room. I prayed to Our Lady of Lourdes to let my son live. I prayed so hard for my son to be born; here I was, six short years later, praying to God and his Holy Mother to let him live.

I wanted so desperately for him to live.

They brought him around and put him on a respirator.

On that Friday night, they injected him with Vincristian, a standard chemotherapy drug.

I was still staying at the hospital but I was in a separate
room
by this stage. Harry was staying at home with Anthony and my parents, who had flown over once I told them the diagnosis.

On the Saturday morning, when I went in to see Ronan, he was much brighter. His big beaming smile was back. He was alert. I thought, ‘My God, the drug is working.’ But the effects were only to last for a few hours.

Later, everybody was there again. Kit and Tony had come over and were a great support. Mother and Father were arguing with each other in the corridor. It really got to me. I did not know what they were arguing about and I wasn’t interested.

Over the weekend, lots of my friends came to see Ronan. Breeda Conway knew someone who had a piece, a relic of a mitten of Padre Pio and asked him to bless Ronan with it.

I was grateful for any help, however tenuous, but by then I knew that it was not going to work.

On Saturday night, Michael Roberts, Harry’s brother, stayed the entire night by the bedside.

Sunday came.

My cousin Terence and his fiancée Niamh came directly from the airport to see Ronan. He was able to tell them that he was going to get a puppy. He did not know whether to get a large one or a small one.

One of the consultants came to see me. He said, ‘You have some very difficult decisions to make. My family will pray for you at church today.’

Strangely, it was more than my family said to me. I wondered how many of them were going to pray for my son or me on that Sunday, in February 1986. My parents were not praying. I could hear them laughing and arguing again out in the corridor. I had two mass cards from my two brothers, John and Tommy Junior, but that was all.

Monday, February 10. Early in the day, my friends Peter and Angela were there when Ronan wanted something. He
couldn’t
speak properly and was trying to make signs. I knew that he wanted cake and custard. I remember asking a nurse if we could put some in his mouth and then take it out again. She was so nice about it and went to ask the staff nurse. The staff nurse said not to give him anything.

Harry, Paddy, Kit and my parents got together in consultation. It was decided between them that, ‘Any decisions to be made, it’s up to you.’ After talking with the consultants, it was decided that in the event of another cardiac or respiratory arrest, he would not be resuscitated.

It was the most difficult decision of my life.

I had been making decisions all my life, but no decision had ever been this tough.

I felt very alone.

Before making the decision I asked for guarantees of life.

There were none.

I asked about a timeframe. Six months? Four months? I wanted the longest time possible.

They were talking in terms of weeks.

That Monday night it was fairly obvious to me that Ronan was not going to survive. He pointed to some cards on the wall and indicated that he wanted them to be taken down. Two of them were mass cards. One was of St Joseph and the child Jesus. The second one was of Our Lady with roses spread around her feet. When he was holding the card with Our Lady on it, I asked him, ‘Is this lady very special?’

‘Yes,’ he said

‘Am I as good as her?’ I asked.

‘No.’

‘Can I ever be as good as that lady?’

‘No.’

‘Ronan, do you want to go home?’

‘No.’

‘Can I go wherever you are going?’

‘No.’

‘Can I ever go where you are going?’