6th October, 1989
A nice soft bed,
It might as well be a hard concrete floor,
For it gives no rest.
The Nurses Home became a second home, but all I remember was going to sleep which never came, waking up early have breakfast, wait for some nurses at the other end of the dragon as it was 6.00 am, and still too dark to walk outside. Sometimes, when there were no nurses, I just entered the dragon alone. I prayed to God for safety.
A nurse took me down to the crèche. (Later, Betty, Andrew’s night nurse told me it was her, only I was too spaced out to remember.) The supervisor was a young Maori woman, Andrea Morris. She said, there were hardly any mothers leaving their children so it would be fine to leave Gabrielle aged 17 months and Deborah aged 4 ½. She was sure that the girls would be fine. There was another elderly Pakeha or European woman, Cathy Thompson. I think she was a volunteer and she came twice a week. In my notes, I wrote of a Margaret Smart, but I have no recollection of who she was.
The crèche was very big, but very sparsely decorated. I think the hospital gave the space, and paid the wages for Andrea. The rest of the toys were donated. There was a little tea room at the back. I don’t remember where the babies slept, but I think there must have been some sleeping spaces or there were mattresses. If Gabrielle had her daily nap, it was trivial where she slept.
Andrea suggested that Deborah and Gabrielle come in the morning, and at lunch I would take them to Oliver’s. After lunch, we could go for a little walk, and come back to the crèche. Gabrielle has her nap, I take Deborah up to Ward 11A for our Andrew-Mum-Deborah time. Round about 3 pm, I take Deborah down to Andrea. By then, Gabrielle would be awake. We have afternoon tea. I go back to Andrew. CO comes after work at 6pm, we all go to see Andrew, and have dinner at Oliver’s. CO paid for his own meal. It was good, at least we were a family having a meal I didn’t have to prepare and cook. We had a rest in my room upstairs, and then they went home to sleep. I went to spend time with Andrew until the nurse told me, time to go, you need your rest as tomorrow will be a long day.
In the afternoon, Andrea told me, “Good news, the hospital decided I didn’t have to pay for the childcare.”
I don’t know why, because I saw other mothers paying when I was there. This was a great relief. God took care of that financial problem.
This seemed all very well, but nothing is smooth sailing when your ship is sailing in uncharted waters. I didn’t really want to spend too much time away from Andrew. Yet at the same time, I knew the girls needed me. My heart and my time were divided, and it was as if claws were clawing and digging into my heart and causing it to bleed.
I used to really like the song, “Seek ye first the Kingdom of God.” But at this time, it seemed that God had forsaken me. How could I seek him first? There were a lot of anger issues with the obstetric team of doctors. Dr James told me to write a time-line of my life. He would arrange with the hospital to get a meeting with the doctors. He also sent me up to the hospital library to do research on Campomelic Syndrome. It was ironic that some of the students who used the library thought I was a doctor.
Ward 11A had six mini nurseries, they were more like cubicles. The first two were the top priority ones. Those had babies in incubators and heat tables and with tubes and wires attached to their bodies. Then it went to nurseries 3, 4, 5, and 6. When Andrew came back to Ward 11A, he was in 4, but as he was a non priority case, it didn’t matter. They were just providing him with board and nursing care. Not medical care. The doctors still came to see him every day.
One morning, his cot was empty. I cried. I thought Andrew had died. I was angry they didn’t contact me. I had left notes for them to call me when he was dying and I would be down from the Nurses’ Home in a flash.
A night nurse came and said, “I am sorry….”
I couldn’t listen any more. I was shaking all over.
She touched my shoulder and repeated, “I am sorry we didn’t tell you, we moved him to nursery 6. We should have told you or done it when you were here. We were less busy in the night, and thought it was a good time to move him, as the morning nurses were always so busy.”
I literally let her lead me to the last ward. Andrew was there in the corner, the first cot at the entrance.
I cried and told him, “I thought you had died without saying good bye to me.”
That moment when I saw his empty cot and thought he had died, my heart stopped too. It was as though I had died with him.
It took me a long time to settle down. A nurse brought me a cup of hot tea, to calm my nerves. I thought to myself, would this be how I would react when it actually happened.
A senior professor came and asked if I would talk to some students because Andrew was such an unusual case. There were three young students and there was I telling them lots of things about CS, and showing them all the parts of Andrew. I actually spoke a long time. Andrew’s nurse came and told me quietly that I didn’t have to do this if I didn’t want to. I was emotionally drained when I finished. I don’t know how much the students took in, or what they had to know about CS. I remember the old professor coming to thank me, and apologizing that he hadn’t make it clear that all he wanted me to tell the students was the psychological side of a mum faced with a baby with a terminal situation. He didn’t expect me to tell them the clinical facts. Andrew’s nurse must have complained that I was subjected to such a horrific situation.
Charge Nurse June made a beautiful management care plan for Andrew. She decorated it beautifully and put it on the wall. She did it in her own time that Sunday and the nurse told me that no baby had ever had the charge nurse do this. I thanked her for this and she said she wanted to do it for Andrew.
Throughout this time, we expected Dr Tan and his junior Dr Brown to come and see us. But they never came.
We were scheduled to have our first official meeting with Dr Tan and the hospital. Dr Tan didn’t have the guts to attend the meeting. He asked Dr. James to represent him and the hospital.
Dr Tan’s no show infuriated me. Why couldn’t he say, “I am sorry” since he made a blunder? And he couldn’t even say it to my face?
Now, even CO was angry that Dr Tan treated us in a patronising manner. No doubt Andrew was a terminal case, but had Dr Tan done his homework and followed it up, he would have been wise to inform the delivery suite and the doctors to be prepared.
At the meeting, we requested Andrew’s notes so we could investigate further.
I asked Dr Armstrong, the paediatrician, if Andrew would have died then if they had done nothing to him. Dr Armstrong said the answer would probably be yes, as the doctors gave him oxygen and helped him breathe. Would it have been better he had died then? It certainly seemed so when I was in pain sitting and waiting.
Deborah and Gabrielle had adjusted well in the crèche. Andrea was a very good supervisor. On the first day, when Gabrielle kept crying, Andrea took a Tommy Tippee turtle toy and spun it across the floor. Gabrielle stopped crying and went about 20 feet away to pick up the turtle, retrieving it for Andrea for her to spin it again. Patiently Andrea repeatedly entertained her this way, until the friction of rubbing it against the floor was scraping the colour off. I think Andrea must have been tired of this game, as she told Gabrielle that turtle wanted a rest. It continued to be Gabrielle’s favourite toy. She played with it by herself.
After Andrew died, we went to see Andrea to say goodbye, she said the turtle was too scratched; otherwise she would have given it to Gabrielle.
Six months later on May 5th, 1990 Gabrielle turned two. I made her a turtle jelly cake because she was allergic to dairy products and eggs so couldn’t have an ordinary cake. I bought her the same Tommy Tippee turtle. She was very thrilled to have it. She remembered the good time she had with Andrea. But it cut into my heart, that turtle belonged to the time when Andrew was alive. That turtle was more for me than for her. We brought the turtle to Singapore.
In 2005, Gabrielle came back to New Zealand to study her last year of high school. Before we came back in July 2006, a sister of my British neighbour came from the Philippines. She ran a Street Kids program in Manila and had asked for good old clothes and toys. I had packed away all my clothes and toys I didn’t need any more. Before I sealed the box, I held the turtle, Gabrielle’s turtle. I wanted to keep it the way I kept Andrew’s dog. It was a very emotional time. I decided against keeping the turtle. I reluctantly put it in the box. Some kids in Manila could have use out of it.
One day in 2007, I saw the same kind of turtle in a Salvation Army Op Shop in Auckland. I have this feeling that you would not understand. I am back to the city and country Andrew was born, and there was the turtle reminding me of that fateful time. I bought it and gave it to Gabrielle. Gabrielle had since moved out of the house and gone flatting. I asked her if she still had the turtle. If she didn’t want it any more, I wanted it back and I gave this part of my manuscript for her to read.
She said, “Mum, you can have it.”
Deborah was doing well in the crèche with Andrea. One day she came up to the ward to give Andrew a picture she had made. She had drawn her family photo. When I saw it, I cried. She drew Andrew as a baby floating above us. She had glued onto him a blue Chinese conical hat. The rest of us were standing firmly on the ground. She told me that she stuck the hat on because Andrew was a Chinese boy and he was up in the skies because he was an angel. To her, it was a good picture. She had in her own way accepted that Andrew was going to die and he was going to be an angel. We pinned the picture above Andrew’s cot, and she proudly told everyone that her baby brother was going to be an angel.
One day, Deborah was very excited. Some kind ladies had knitted lots of little dolls for the hospital and left them at the crèche. Andrea told her to bring one bag for Andrew, and one bag for the rest of the little babies in Ward 11A. There were more than 10 dolls in Andrew’s bag. She chose a doll that she wanted to give to Andrew, another for Gabrielle’s gift to Andrew, and finally mine. She chose the one I liked very much. She chose one for herself and one for Gabrielle. Then she confidently went to all the other six nurseries to distribute them to the rest of the ICU babies.
When Andrew died, I asked his nurse if she would pack a doll for him to take it to Heaven, meaning it would be buried with him. I was very happy that Nurse Daphne chose the one that I had given him. She kept the puppy dog, as she knew I wanted to have it back. Whoever those ladies were who knitted the dolls, I wish I could thank them. I hope all the other babies that day survived and took their dolls home.
On 16th December, 2010, Mrs. Nesbitt, one of my British blogging friends, posted photos of knitted dolls of the Nativity scene. She invited readers who wanted the patterns to tell her and she would email to them. One of the dolls was Mary holding Jesus. It looked very similar to the doll I gave to Andrew. I told her I was interested in her patterns, and would explain why I wanted to knit one. She sent them to me the next day. It seems so strange that after 21 years, I get to see a doll that meant so much to me and at the time when I am writing this book.
November 10th, 1989.
CO and my relationship were volatile. We didn’t argue in public, we always went to some place where we were alone. One morning, he was late in coming to drop the girls. I was upset waiting at the lobby for them because I wanted to be with Andrew. If I had had a passport, I would have taken the girls and flown to Australia to be with my Dad and leave Andrew and CO. I had had enough.
That night, I wanted the girls to stay with me in the Nurses’ Home. CO must have protested but I didn’t care. I didn’t want to see him any more. I told the girls that they would have a sleepover in my room, but we had to be very quiet, otherwise the friendly Mrs. Cherry Thompson would come and chase us out.
I didn’t know at that time that whanau or family were allowed to stay in the room too. You see, to the Maori, whanau was very important. We only had a single bed; both the girls were crying. Deborah was afraid Gabrielle’s crying would alert Mrs. Thompson. The bed was too small even for them. I caressed Gabrielle and cried myself. I had taken the first step to leave my husband.
I couldn’t sleep a wink. I stared at my daughters; I stared at the family photograph when we were once a happy family.
I cried, “God, where are you when I need you so desperately. You are so far away.”
I did what I normally do when I can’t sleep. I got out my writing pad, but I couldn’t write. God must have told me to write a letter to CO, to tell him I loved him.
My dearest husband,
I love you. While my head wants to escape all this, and run away, somewhere at the back of my head tells me that this is the worst thing to do. But knowing my pride, once I have left, I am not going to come back.
Please, please, for my sake, for our sake, for our daughters’ sake, when I say, I want to leave, do not reply and retaliate saying, “Go!” Just as you did yesterday, even though your intention might be to jolt me to my senses.
Instead, hold me tight and ask me to stay. Tell me that you need me, tell me that Deborah and Gabrielle need me, and Andrew needs me. Tell me that I am needed for this family.
Right now, I am at the top of a crumbling cliff contemplating if I should jump. I need you more to hold me back from jumping or hold me back from escaping. It must have been God’s plan that I haven’t got a passport. It is no empty threat. If I had a passport, I would go to Australia. I would take the girls to Father. I won’t come back, in this state of mind; even if Father and Charles persuade me to come home, I will not. My pride is too great. It would be up to you to beg, to kneel and beg me to come back. Not even if you fly to Australia, will I come back. NO! NO! NO! I can’t take it anymore.
The only thing stopping this flight is Father. I don’t want to upset Father. He is still grieving for Mother. I am sure he will take me in, but it is not the right thing to do.
Olwyn says we both have our pride; we both need to work on it. Both Wendy and Olwyn asked me how we met. I told Olwyn, I was going to Palmerston North, I wasn’t meant to come to Auckland. Everything was so strange that I should have my plans change and come to Auckland and meet you. Would I have met you if I had gone to Palmerston North? Would I be in this hell hole?
God had different plans for me.
Thank you for standing by me right from when we started our relationship.
Thank you for being there when I had that breast operation.
Thank you for standing by me when we had Deborah.
Thank you for standing by me when I had the operation when I had the breast infection.
Thank you for standing by me when I fell so sick when Deborah was weaned; when most marriages would have broken up.
Thank you for standing by me when Mother died.
Thank you for standing by me when I had the difficult pregnancy with Andrew.
For all these, I praise God for you.
Now, however, I need more than standing by me. I need you to hold me up and prop me up.
Last night, I had enough of this rocky road, I tried to have a reconciliation. Instead our talking made it worse when it became a shouting match. I spoke to Don, I felt better. After the meeting with Dr. James and Wendy, I felt good. I felt really good after Dr. James looked at Andrew’s charts and came and told me that my observation was right, I told the doctors that when the nurses used the bigger nasal tube, Andrew was always sick. Now, they will always use the small tube. I just felt good because it sort of showed to Dr. James and everyone concerned that I didn’t just make a whinging comment.
Please darling, you are the most important person in my life. I want to hold you, to touch you. But something is holding me back. That something tells me you are the cause of all my trouble. That something makes me feel repulsed at the sight of you. That something is very sinister, it is from the Devil and he wants to break our marriage up.
But I actually want you to hold me and touch me as well. Though at this time, I don’t want you to kiss me. I will let you know if I want to or not. Please let me hold you.
Please, do not turn me away. Hold me tight.
Olwyn told me her paediatrician brother took care of a Campomelic child in Australia. The baby lived for four months. My God, I hope Andrew is not going to live that long.
Andrew is like a tunnel, only it has no opening at the end. There are lots of obstacles that we keep banging into. We don’t know how long it is. Please help me walk together in this dark dark abyss. Please don’t let me stall at any of the hurdles.
I love you. Let me clarify my request that when you see me in the morning to first ask how Andrew had been and how I had slept. This is not to DICTATE to you what to do, but for you to GAUGE my feelings, my state of mind.
Last night I did not sleep a wink. I was up writing this letter. It is 5am. I am very upset.
At this moment, and in my current state of mind, I feel no emotions for you. I still don’t want to see you. I know it is wrong and unchristian-like. The evil force is lurking, and ever ready to pluck me away from you and from God. I need you to help me.
I love you.