We spent Christmas up at the farm along with C’s grandmother from the UK. We had some lovely times in the pool and relaxing. D and Sue were both upset that they were not offered an opportunity to go to church on Christmas Day. Mum and dad had not been to Mass in years, it did not occur to them but they would have taken them if they had asked.
There was an undertone of sadness due to what I had experienced in November, naturally. My uncles and aunts gave me the biggest hugs when they came over. My uncle who rarely cried did so and asked me if I was okay.
My brother was working in the mines and having a very good social life. We did not see much of him though he loved having us in the house. Dad worked through most of the holiday period so we did not see a lot of him.
After a week we went back home to Sydney and life went back to normal. Off the horrid medications our little boy was much brighter. He was having a horrendous amount of jerks but happy with it. He love Sesame Street and Playschool and his cartoon videos.
Grandma also knitted him every toy under the sun. He especially loved his monkey, Dum Dum and his Humpty Dumpty. Her scarecrow was a work of art, it had tiny tiny lady birds on it as well as birds. Everyone was stunned at mum’s skills.
Sue went back to the UK but the night before D had the most vicious talk with her. He harangued her and said the most awful things. She was crying and crying and in the end I came in and turned my back on him, put my arms around her and said that is enough. Stop it. This is your mother, crying inconsolably, what is wrong with you? He just shrugged.
I walked her into her bedroom and helped her onto the bed and got her a cup of tea and some biscuits. I had never seen such cruelty before. He said she thought God took his father so that he would not worry the way she had about him and the strange travels he had undertaken before I met him. She believed it totally and would not retract it so he hounded her to do so.
The next day she returned to the UK, the night before making peace with her son, as she always did. She would never go to bed angry, it was a fundamental part of her nature, true forgiveness.
I was having a lot of pain in my right wrist so was not knitting as much as usual. I was sent to a Hand Surgeon who arranged surgery ASAP for Carpel Tunnel Syndrome. I went into the Private Jewish Hospital in Bondi Junction where the surgery was not as straight forward as they thought it would be. They were decompressing the arteries on both sides of my hand and was told it would be almost instant relief. Whereas I woke up in agony. My arm was raised and bandaged and it was swollen to twice its size.
The surgeon came around and in front of me said “fuck I should have checked her neck” to the nursing sister. That did not fill me with confidence. I was also really missing my baby, then when he came in his right hand too was bandaged up. He had it clasped against his chest and he would not let it go, even for a big hug with mummy.
His father told me they were playing in the park when he fell on some glass. He said he put him in the stroller and ran him down to the Children’s hospital with him bleeding all the way. Our doctor was a lot closer but he panicked.
Once at the hospital they stitched the deep circular cut. His father thought it amusing that C was so distressed he kicked his firmly strapped on sandals completely off. And then would not let anyone near him.
So I went home to a toddler who was suspicious of us both if we came near his hand. Eventually he did let me change his dressing and bandage it. Perhaps seeing mine bandaged too helped.
During this time the case for the insurance payout was going through for when D was hit by the car in 1983. It was a considerable amount of money and he asked me to move back to the UK and be near his family for support for C. He was extremely annoyed with my family for not helping us more, though dad was not yet retired and my mum was needed on the farm. He could never understand that people could not just forget about their jobs and take off.
He promised me that we would be warm and looked after. And I would have my own bank account and money. I was very torn as I had been going to the High Church since the Termination. His mum had liked it there too and we went together while she was out here. They were currently asking for a young family to be Verger’s and I was very keen for us to apply. He said that is something we could do in the UK as there were a lot more churches so more need for Vergers.
So once I agreed we had to tell my parents, which was very very hard. And the rest of my family. We packed our things and shipped them, the place we were in was rented furnished so we only had personal items and toys etc to send ahead. Soon it was time to say goodbye to my parents and aunts and uncles and we caught the train back down to Sydney. There we said goodbye to my sister and K and my friends including my lovely neighbour, a mum across the road from us. We had met earlier the previous year. She had helped me so much and I also looked after her little girl, born on the same day as C. My husband did not like our friendship, she was a nursing sister and was wanting to get me work with her in a care home. She was not happy about my being so dependent on D. Sue had liked her a lot when she met her on our usual morning tea get togethers.
My brother had not been at the farm when we were up there and the night before we left he drove down to say goodbye. I was quietly distraught, seeing my young brother for possibly the last time. He loved our flat and said it suited us and if only he and my parents had been able to come down more things might have been different.
Eventually he had to go back for work in the morning and we settled in for our last night in Australia. We had the name of a good specialist in London from Dr Johnston and Professor Wise. Sue was meeting us at Heathrow. Everything was in place for us to start our new lives.
New Years Eve a couple D knew from St Andrew’s Cathedral Healing Ministry came around for dinner then went to the midnight service there with him. New Year’s Day he went out for the entire day playing tennis with a friend from the Pentecostal church which he had gone to when first in Australia. I was pretty hurt but could not get through to him that these were days for family. It was if I had insulted him somehow. I soon learned to avoid these kinds of discussions as the silence and sulking was too difficult and drained too much of my energy.
We went up to my parent’s farm for a few days and swam in the pool and D played snooker for hours each day. It was good to have the company and the space. Eventually D’s Christmas break was soon to finish so we returned to Sydney. My sister visited and K and A. C had started crying a lot, one time we stayed with A she observed it and suggested not laying him on his right side. It seemed to help, for a while at least.
However over the next few months he went into screaming fits, it was not colic, he was different when he had that. Dr Johnston referred us to an occupational therapist who dealt with sick children. She observed C at various times, when he was screaming and when he was just crying and also when he was not. She said she felt he was in severe pain and showed me how to do a therapeutic restraint on him. It was very difficult at first as my husband could not do it and seemed to resent that I could. However, it worked. C would eventually stop flailing and go to sleep, often for hours. A Canon at the Healing Ministry witnessed it one day and suggested to David that he pray while I restrained C. It helped D to feel useful and to claim that God was doing the work and the healing.
Over winter I knitted lots of sweaters for C and also started childminding a lovely pair of sisters for one week a month. C loved them and they spoiled him. It was fun and the money was handy as D’s job had finished, as IBM had said it would and he was believing in God to give him a job. With no expending of energy on his part at all. He went on the dole and often became dirty and dishevelled again.
One time my friend L from New Zealand stayed with us for two weeks, leaving her little girl with her grandmother. We had not seen each other for two years, D was very jealous and put out. One morning I was getting C out of his cot next to the bed and walking past the end of the bed. D kicked me really hard in the legs, saying go on, go talk to the her, having a baby is all you married me for anyway. I just shook my head and walked out of the room.
L returned to New Zealand and life went on as before, though C seemed to be having less pain attacks. And his eye had at some stage settled properly. No,explanation for why. However he was in and out of hospital with croup. He had to be in an oxygen tent which was difficult and frightening for him. D slept at night in the playroom and I stayed 16 hours during the day.
When he was 11 months old he started to do a very strange thing. He was sitting up and crawling, had reached all his milestones, however he kept getting knocked backwards by strange head movements. Violent ones which knocked his head repeatedly into the floor when he crawled. Dr Johnston arranged for him to come in and see her. D was able to come along as he was still waiting on God to give him a job. Dr Johnston had arranged an EEG, a skull X-ray and another brain scan, under anaesthetic. He was being tested for rare diseases and some of his rectal lining was being sent to South Australia for testing.
When he came out of the Cat Scan he was sore and crying. I sang him the song that I sang him every evening before bed.
Mummy loves you C C C
Mummy loves you C J
Daddy loves you C C C
Daddy loves you C J
Jesus loves you C C C
Jesus loves you C J
Grandma loves you C C C
Grandma loves you C J
Grandad loves you C C C
Grandad loves you C J
Jesus loves you C C C
Jesus loves you C J
And on and on until everyone in the entire world who loved him had been named in song. It really calmed him. I looked up mid song and the head nurse who worked with my friend A was standing near me, looking at C, crying. However his skull and brain were the same as before and his EEG was normal. He did not have the movements on the EEG unfortunately. Dr Johnston pulled no punches with us. For the first time she was very very direct with us, saying that his development and indeed his future relied on him outgrowing these by the age of two.
She said they were called Myoclonic Jerks and she did not know which kind they were. He started at around ten a day and was soon up to over a hundred a day. It was impossible to count them. They tried so very many drugs. He had to have blood tests weekly, luckily they used butterfly clips which were much easier for tiny children and babies. Over time the drugs caused his eyes to become dull and confused. His head hit the floor and walls so many times his pain worsened.
Then he was hospitalised for Croup for ten days when Dr Johnston was away. Professor Wise supervised him even though he was not in there for the jerks. The play room at The Prince of Wales Hospital was a wonderful place to meet other parents and to relax with a coffee for a short while. One of the nurses had a guitar she used to bring in and she used to sing lots of nursery rhymes in there. Her name was Kate too. A friendly, happy, gorgeous girl the children and parents adored. She regularly sang Old MacDonald Had A Farm and every parent would sing a different animal ie pig etc. I was so tired, so stressed, so unsupported that I dreaded that song, I went blank, could not remember what the last animal had been.
Kate the musical nurse noticed C crawling along the corridor, banging his head repeatedly. One day she saw Professor Wise talking to me. He was asking all about C and my pregnancy. And about his medical issues since last Christmas. She came over and told him she had seen the jerks and how awful they were for C. Professor Wise told her to get down on the floor and show him. Kate looked from him to me, then pulled her uniform dress up so she could move around and proceeded to act like a bucking bronco. He got her to do it for some time then said thank you, looking at me grimly. He then suggested a helmet to protect C’s head. This proved to be one of the worst experiences ever for our son.
I went with him after he had recovered from Croup, not having a clue what would be done. They had to make a Plaster of Paris Mould of his head to actually make sure the helmet fits properly. Which meant totally covering his head down to his neck at the back and chin at the front. They put holes in for the nose but it was utterly terrifying for him. My laughing, happy, gorgeous boy who laughed when he was not jerking madly and after he had an attack of pain was hysterical. There was nothing I could do but croon to him that mummy was there. His special song did not even help. I prayed that I could be calm so that he could feel it in my body but he was beyond hysterical. It was on a long time, or it seemed to be. It had to set perfectly. Then it had to be cut off with electric saws. It was torture.
After that I phoned G, my specialist friend whose daughter had died of Leukaemia. He was terribly upset, asking if C had tissue sent to South Australia. He said he was so sorry, and to call him any time for support. He assured me C was under the best team and we had to take it day by day. I remembered him telling me I could have children, but not with anyone who had migraines or epilepsy in their family. I had found out after the wedding that D’s sister had migraines but there was no epilepsy. The doctors had been insistent on knowing that. I asked G how his new baby was going and he said well but slightly anaemic.
Soon my mother in law Sue arrived for a holiday. While she was there C was hospitalised to check his medications and jerks. He had a lovely Registrar who called him a Real Little Aussie Battler. He was very fond of C as was C fond of him. They used to play on the floor, rough and tumble together, C laughing with delight. One of the nurses had put a photo of C up on their notice board of regular children and babies. On it they had written “the happiest little boy, who smiles through his pain’
Sue upset me terribly when she told me that she felt so sorry for the mother whose baby was in the bed next to C. That she might not have more children due to her child’s genetic condition. She went on to say that her dear A in the UK was feeling sad because she did not know if she could have another two children as planned due to C and his “medical issue”. Sue would never say epilepsy or Myoclonus. It was dirty to her, shameful. She was talking more about the possibility of Neurofibromatosis. The day before it was C’s first birthday my parent’s came down to visit us, bringing gifts for C and seeing how the children’s hospital worked. Dad kept saying it must have been a Hotel first. I could not get it through to him that it was always a hospital.
The day after C was released from hospital was C’s birthday and we had a small party for family. A and W came, my sister came later. Neighbours loved him and popped in with gifts. It was a poignant day as A and her husband W were moving that week, north to Yamba, where they had bought a Caravan Park with her brother and his family. She had been such a huge support and such a dear friend, I would be lost without her. Nonreligious she had been a great antidote to all the fundamentalism I was dealing with at home and at the local church.
A few weeks after Sue arrived my husband had booked an appointment with the top clergy at the Healing Ministry at St Andrew’s Cathedral. There were several men, one I had met several times, a Canon who ran the Ministry there. They asked set questions about our belief and our faith in God the Father. In Jesus. In the Holy Spirit. And did we really believe God could heal and perform miracles. My husband said yes. I could not say that. I wanted C to be perfect. To be pain free. I had been concerned about migraines but they had always been a women’s thing in our family and D said there were none in his. They did not like that I could not say that God had already healed him 100%, that I just had not claimed it yet. By then I really wanted to get out of there. So next they asked me questions about how I had felt when C was in utero. Hammered me with it, until they finally accepted my quite angry assertion that he was a much loved baby from the time of conception to now. And I finished by saying I resented that men only were there and that my husband was not asked about how he felt about his baby. Canon G listened carefully then asked if C had been baptised. We said no, we were waiting for him to decide what he wanted later. When we said that he went very quiet then said that Baptism was also a Sacrament of Healing and he believed this was what was needed. None of the other things were relevant and he thanked me for my honesty. He asked how we would feel about that and we both said of course we would arrange it. He said to make sure he was invited as he would like to be one of C’s Godfathers.
While we were arranging the Baptism with our local church I found out that though I was on the pill, I had fallen pregnant. First I felt immense joy, then came fear and dread. When I attended the Anti Natal Clinic at the hospital the Registrar asked about my previous pregnancy and about the Pre Eclampsia. And asked how my blood pressure was now. It was not good as I was up nights since C started the jerks. They would wake him up from his sleep and he would be jerking for a few hours and playing as well. We watched music videos together on TV. He loved dancing with me to Dancing In The Dark by Bruce Springsteen and Uptown Girl by Billy Joel. He also loved watching Popeye dvds and had a fantastic Popeye doll. All this made me exhausted though. And before D had finally got part time work as a Home Care Aide I had gone out nannying, sometimes taking C with me. We needed money, the fridge was often almost empty except for C’s food which I made him from scratch.
The doctor asked about C’s health and then finally asked me if I wanted this baby. I said that I did but I just did not know how I could have it. My son needed me, I could not be in hospital for months. And I did not trust his father to look after him properly. She immediately said let us book you in for a Therapeutic Termination. It was arranged very quickly, and a date was set for the day after C’s Baptism.
My husband supported me in the Termination as did my family and his. He asked our local church Vicar to pray for us, which he did in his office. He was genuinely horrified for the choice I was facing and obviously his position towards abortion was known. He asked about the power of prayer to heal us and I said prayer was wonderful, it helped calm me, made me feel close to God but I needed practical help, and there had been none. So he prayed with us and we went home.
The next day we were in Bondi Junction shopping when we spotted a friend from church, a heavily pregnant mum who had been to our place many times for coffee and lunch. I was pushing C down the sloping ramp to K Mart when I saw her walking up. I called out several times and as we passed she turned her face away from me. Several people at church did the same thing so I asked the Rector and he said he had asked a few people to pray and some of them were very upset I was even contemplating it. As if it was just my decision, it was my body but it was our baby. I told him what happened and that I was very disappointed. And that I was going to attend a High Anglican church in future. He said he understood.
Mum and dad and my cousin E came down for the Baptism. K was going to be his Godmother. D’s sister A his other Godmother. Rod a friend from the church where we met was going to be his Godfather and I D’s Curate friend was also going to be his Godfather as well as Canon G. It was a lovely service celebrating the Sacrament of Baptism and C was also anointed with Holy Oil for The Sacrament of Healing. We then went back to our flat for refreshments, the cake was a disaster, but everything else was great, especially K’s home made scones. Dad was quite standoffish with Canon G especially when he found out he was brought up Irish Catholic. Mum loved him though. Sue and I liked him but found him socially odd. My teenage cousin had a fantastic time playing with C and meeting everyone.
That night when I went to bed D turned to me and said he was really sorry and I said it is okay. Then he went to sleep and I lay there for hours. Telling my baby goodbye. That I was so so sorry. I awoke early and caught a bus to the hospital. D had wanted to come but I could not think of anything but getting it over with. I could not talk to anyone, let alone babysit my husband. And though it was our baby it was ultimately my body and I really felt I was alone in this decision.
When I got there around 6am the day surgery waiting room was full of women trying to find out why they could not get pregnant, desperate for a family. Everyone was asking what everyone was having done. I pretended to sleep. At around five to eleven a wards man came to get me and I was positioned outside the Operating Theatre and left alone while the minute’s silence was observed. It seemed a lot longer and I was so grateful that the usual wards man was not there, I had seen him from a distance earlier and he had definitely seen me. He was a member of our local church, had been to our home many times and told us he always told women having abortions just before he wheeled them in that they could change their minds. He was also one of the ones the Rector asked to pray for me. When I woke up the nurses were very brusque and I was really glad when I was allowed to leave and I was soon home with my family.
The next day I walked C down to the hospital for yet another EEG. He had many of them and did not mind them as they had skull caps so that the electrodes were stuck on that not the actual head. It was a matter of keeping him still if possible. No easy task however this time we did not mind. He had non stop jerks for the first time while having a test. Dr Johnston read the results carefully and said that the results showed no unusual activity leading her to believe these might be the rare kind that goes at or by two. She could not say for sure but thought it worth taking him off all his drugs and letting time tell us how he would be. I thought that a great idea and went home, thanking God as I went for answering my prayers, not as others expected Him to but in giving me reassurance that these jerks at least might go and leave our little boy to have a normal childhood and life.
Over the next week Sue went to Tasmania with her in laws from Adelaide. I started to get awful pains in the pelvis and went to the women’s hospital to the Ante Natal Clinic. With all the pregnant women. They said it was an incomplete Termination and that I had a bad infection as well. Another D and C was scheduled for the next day. This time the nurses were very kind, Again I did not have the wards man from church. When I awoke I felt cared for and not judged, unlike the previous time. I then went home and my sister came over and stayed while Sue was away, cooking endless liver dishes etc to get my iron count up. She was really kind and helpful, I appreciated her coming so much. My parents rang me to make sure I was healing properly. They had wanted mum to nurse me up there but I needed to move on with my life here.
Life seemed very good, though I had a feeling of dread I just could not shake. It was not helped by the fact I still could not get up out of chairs and the bed without great difficulty. It was like something was holding me down, my legs just could not do it. I had to pull myself up and usually stay upright. My friend K visited regularly at weekends, she was at Wollongong Uni and looked forwards to time away. My GP was concerned that my blood pressure was still dangerously high so started me on antihypertensives. I breastfed until then but had trouble after that with C crying, not settling and generally seeming very hungry.
My mum was staying with us for a while to help and said that he was hungry. She encouraged me to try him on Carnation milk as a supplement over the weekend, until I could see the Baby Health Clinic in Clovelly. C definitely needed something apart from the breast as he downed the bottles of milk. I was concerned though about nutrition etc so asked the clinic about a formula and they recommended Lactogen.
Within days he was projectile vomiting, with terrible diarrhoea and screaming, going puce in the face and pulling his legs up to his tummy. The Clinic was no use at all so A, my nursing school friend, ran a test on his nappy and it came up positive for Lactogen Intolerance. On the same day I was with him at the GPs, a lovely English chap with two young children who had replaced David Bennett when he left. He heard C screaming and screaming and said this child is hungry. He went out to his back room and gave me six tins of Soy Milk and said try it straight away and phone him to let him know how he went. As soon as I got home I prepared the bottle and C never looked back. It smelled and tasted disgusting but it is what he wanted and needed. No more upset tummy or vomiting. Bliss.
Mum had returned home as her back was not good and the spare bed in our rented flat was shocking, an old wire spring one which sagged in the middle. She packed very quickly once I asked her if she wanted to leave, got a taxi at the end of our road, desperate to get home to the farm. It had been lovely having her but she always found it hard to be away from her home. She had loved finally meeting the neighbours who were very fond of C and had been a great help to me.
We caught the train and buses north to my parent’s beach house in Noraville once a month. We had a lot of fun at the beach there in Noraville, mum and dad met us there and had a great time with their first grandchild. My husband was a bit strange on one visit, dirty and dishevelled. He was washing up one day and I came behind him to help him dry up and he jackknifed back with his elbow, catching me on the bridge of the nose. I started laughing hysterically, as I tend to do when I am hurt or something is hurting me. I used the tea towel to stench the bleeding. He was very sorry and apologetic but said I should not have come up behind him like that. I iced my face and when mum and dad arrived laughed it off as an accident. Dad looked a bit perplexed though.
Other times we took him to the farm where we saw relatives and C was spoiled by his grandma and grandad. Mum got up with C and fed him to give me a rest and got up with him in the morning. She was in her element and always had been a natural with babies. My sister P also visited us there.
C had been born with swollen black eyes, due we thought to the traumatic birth. It took many weeks before the swelling went down and when it did his right eye was sticking out. We were a bit silly and as he had a Popeye doll we nicknamed him Popeye. After a week or so I became concerned though and took him up to the GP. He rang a friend of his, Dr Gregory Roberts, an eye surgeon in Bondi Junction who asked me to go up there immediately.
A really lovely chap, he diagnosed C with a Proptosis and said it was he believed Neurological, but suggested taking him to the Sydney Eye Hospital to be examined by experts. They saw him within a week, he was photographed for record purposes and I was told to get him into a Paediatric Neurologist ASAP.
I telephoned A and she said she would see what she could do at work and on the way home I stopped at Dr Ian Gregory Robert’s and he said he had suspected as much. He asked me into his office and told me his daughter had Hydrocephalus as a baby and he could not recommend Dr Heather Johnston at The Prince Of Wales Children’s Hospital highly enough. He phoned her immediately and she arranged to see C in Casualty straight away. I thanked Dr Gregory Roberts and caught a bus to Randwick to get C to Casualty.
I saw the senior nurse who worked with A as I walked in and she said she would go let A know we were there as she had been talking to all the specialists. We were called in to see Dr Johnston who said C needed a skull X-ray and a CT scan ASAP. These were done and about thirty minutes later I was called from the waiting room to see Dr Johnston. She said C had an asymmetrical brain. Slightly bigger on the right. The proptosis was also on the right. He had a larger eye socket on the right as well. She said the Radiographers disagreed however the Professor of Neurology and herself and their team over ruled and suggested the most likely condition was Neurofibromatosis. When I asked what that was the registrar with Dr Johnston asked me if I had seen the Elephant Man film. Dr Johnston glared at him for being so callous but the damage was done. I looked at my beautiful baby boy with horror and started shaking.
Dr Johnson arranged for us to be seen in a clinic soon and I took C in his stroller up to see A where she worked in Outpatients. She came up to me and said she had been selling her soul to Professor Wise who had agreed to see my baby boy ASAP. She said Dr Johnston was very good and that they worked together anyway. She seemed to be talking to me from a distance, I said I had to get home, no reason, I just had to go. She hugged me and said she would come around later. I walked back home, a forty minute walk but I needed to clear my mind. I just plodded on, not aware of anything really. Except sickening dread, and pain.
When I got home D was waiting for me, he said A had rung him and said I was in severe shock. I sat down and explained things to him, again and again. He could not take it in. I picked C up from his stroller and rocked him, wondering at his perfect little face, except for his eye sticking out grotesquely. And his bruising on his eyes.
After that C was measured, weighed and examined carefully at the clinic, we were examined for Cafe Au Lait spots, his father having several. He was very upset and embarrassed that the registrar got him to pull his pants down to check his buttocks for marks or growths. He also became very distant, quiet and cold.
During that awful week friends and C’s Aunt P visited as did Great Aunt Jean from Adelaide as it was the week before Christmas. Life seemed to go on. Even though on 23/12/84 it seemed to stop, for me anyway. The next day on Christmas Eve we attended the Midnight Service at St Andrew’s Cathedral in the city. There was a TV crew there and they zoomed in on the seemingly idyllic mother and infant, not knowing that the serenity they saw was being held in place by sheer willpower, so that I would not break down and cry.
When we arrived back in Sydney we stayed in a lovely bed and Breakfast in Edgecliff Road, Bondi Junction. My husband had stayed there when he first arrived in Australia. My friend K came around almost straight away and then my sister. We soon rented a flat in Randwick, to move in within the next few weeks. After that we excitedly hopped on a train up to my parents farm.
We were met at the station by my brother D and my cousin R and mum and dad. Dad was very happy and squeezed me really hard. Mum cried. After that we stayed for several days, catching up and introducing D to my aunt E and uncle P. Mum’s other brother and his wife were on holiday in the UK. Everything went very well except dad kept telling me off for leaving D out of things. Pot calling kettle black I thought!
I booked in to see my Professor at the Royal Women’s Hospital Paddington at the Ante Natal Clinic. He was a bit concerned about the Campylobactor and my blood pressure was a bit high so he booked me into the clinic weekly. Meantime I caught up with my friends, and D went out a lot with his Pentecostal church friends. We started going to an Anglican Church a short walk away. At the weekends we walked in Centennial Park, always the same route. Other weekends we caught the train up to the farm.
D started back at his old job with IBM though he was warned the job was only for six months as they were relocating to another area and would no longer need unskilled workers to enter data. It was becoming an increasingly highly skilled field to work in and I encouraged him to get some extra training, to no avail.
Mid August at my checkup I was told I had dangerously high blood pressure, Pre Eclampsia in fact. They let me go home to collect some things and told me to come in on Monday for bed rest. That weekend my parents made a very rare trip down to Sydney to see us and also my sister. Mum saw straight away what was going on, I had retained so much fluid that it was obvious to her. She was smiling and seemed okay with us but when we went over to my sisters with her she took my sister aside and was very worried.
I had bought myself a dressing gown from a shop in Bondi Junction on the Friday afternoon as I did not have a decent lightweight one to fit me, being eight months pregnant. D was furious with me for taking money out of the account. I had no money of my own and had to rely on money I saved from the housekeeping. He was very strict with the money. It was his, not ours and with the Pre Eclampsia I could not work.
Once I settled into the hospital I stayed stable, though the swelling became worse. D would visit me every evening after work and we would play scrabble with the board he had brought in. We also played cards. The other ladies were bemused as we were the only ones that played games. It was a good way to pass the time and did not require a lot of conversation.
There was a lovely lady across from me whose last baby had died in utero and had to be delivered. She was on bed rest for most of this pregnancy. My friend A from school who visited me every few days got on very well with everyone. She would chat to everyone and knew their medical histories and why they were there. I was so proud of her.
My parents never came down, they rang every evening and I started to get frustrated because I was supposed to be bright and cheery and keep mum on an even keel. But I was the patient! After about three weeks when they rang the lady opposite grabbed the phone and told them I was not very well and needed my parents support. Nothing changed.
One morning, after a very bad night the staff said my blood pressure was just too high. They arranged an enema and I was very dizzy and for some reason the liquid from the enema ran out all over the floor and I fell over, nobody noticed so I managed to get off the floor and I cleaned up the mess with a towel. Then I cleaned myself and rang my husband and A who arranged to come over after she finished her shift at POWCH. She was also a maternity nurse and had been involved in lots of births so I was happy she would be there as my support person. Especially since my husband was a little squeamish and not much involved in the antenatal care etc.
I was transferred down to the maternity delivery area and very quickly induced by my waters being broken with something I described as a knitting needle being shoved up my vagina. And I love knitting. In fact I was totally obsessed with knitting back then! A told later that it was more like a crochet hook!
All the nurses who worked with my friend, I had got to know very well over lunches in their staff room, had agreed with her that nothing would be happening as it was a first birth and was going to take a while. She did not make it in time because unfortunately when they put the drip in which causes the contractions I think someone must have sped it up by accident. It was going very fast. Within thirty minutes I had horrid backache. Was not dilated enough though so the nurses and Prof and Dr took off. It was an unusual day with a high volume of births. There were women in the corridors giving birth.
I had trouble with my bowels, poo came out repeatedly with contractions, my husband was horrified and kept going on about it. I was crying and saying it was happening again. And again. The lovely nurses reassured me it was fine and cleaned me up. An hour or so later our son was born. And almost strangled to death. The only help we had was early on. After I was given gas (which did not agree with me) and then an injection, the only person to help us was a young med student who had never witnessed a birth before. Luckily he was there and he managed to hold onto our son as my husband ran to get help.
They managed to get his cord from around his neck. It was very hard to hold for so long without pushing. His head was literally out and I had to stop pushing. Not sure how I did it but I was so exhausted that I could not grasp him afterward. I was dazed and very very dizzy. Nobody checked my blood pressure then. My sister arrived swiftly followed by A who was disappointed and concerned at how rapid the birth had been. Three and a half hours is too rapid for a first birth.
Meantime I was cleaned up and examined by a lovely male midwife, who said I had not torn but had deep deep scratches all the way down my vagina. He said they were going to sting, badly. He then became concerned that I could not void, so a catheter was inserted. I was then transferred down to a ward with other new mothers and within a few hours my parents had come down, very very excited. Their first grandchild. Dad was stunned that D was there for the delivery and he kept asking me if I was all right.
I had a few issues, mostly with trying to get out of chairs. My legs would not let me get up unless I held onto something to pull myself up so I mostly laid down or stood or walked.
After a few days we were discharged and we went home, on our first wedding anniversary.
We settled back into life in Beckenham. Work as a nanny for me and also sewing and repairs at weekends. and sleeping in and lazing around for D. Miyoko stayed with us and went sightseeing and studying church matters. One day Sue phoned in the morning and finding me about to walk to work as was my usual way, furiously told D to get out of bed and take me in the car.
It was getting much colder and I only had a few warm outfits, having only brought one suitcase over with me to the UK. Mum had knitted me a beautiful black mohair coat which she gave to be before the wedding, and I had two coats. I had knitted us both several sweaters and also my nephews sweaters but had no warm woollen skirts or boots. My wages went on food and utilities, Sue paid for the rent. I was not at all happy about that.
After several weeks back from our honeymoon I started to get bad asthma attacks. They were especially bad at night, worsened by my sleeping by the window D insisted on keeping open. D called the church and a prayer team came out to pray for me one weekend when I was in bed exhausted from trying to breathe during the night. I was really upset as the men left the room and the women proceeded to commiserate about the shock that the physical side of marriage was. They tried to get me to confess that I could not cope with the sexual side of marriage but I was not going to do that. I was exhausted from working hard and trying to adjust to a new climate where I constantly had a bad cold or virus. As did the children I looked after.
I was fine in the daytime in a warm house and luckily had plenty of warm outer clothes for taking R to preschool and A for walks in his stroller. R was becoming more independent, choosing his own outfits for the day and A was just a delightful little toddler. One day D and I took them into Bromley to W H Smiths where David Attenborough was signing his new book. We queued and as we approached R saw who it was and said in an awed voice that it was The Volcano Man! David Attenborough was beyond delightful with the children and signed several of D’s older books too. It was a wonderful experience and one we would never forget.
Meantime I decided science was my best bet for getting better and luckily the GP practise Sue went to thought so as well. They ran a battery of blood tests and one day I received a letter in the mail asking me to come in as soon as possible. When I returned from the very knowledgeable and most senior doctor I informed D that I had a medical problem causing nearly all my symptoms. Hypothyroidism, which was found to be severe Hashimotos. I started the medication and was told that I would not feel so cold soon and that I would even notice an improvement in my periods.
By then it was almost Christmas and I was not feeling any better. So much so that A and T my employers suggested I take Wednesday’s off to rest. The boy’s godmother was more than happy to be with them one day a week and have some extra money too. This worked well apart from the loss of wages. D’s response was to ask his mother for more money. I was so uncomfortable with this, it was against everything I had ever done in my life. I never asked for anything. It was a principle of mine. Deeply ingrained in me by my parents without even knowing it. Seeing them both work so hard to make a life as migrants had a huge impact on me.
I was beginning to feel like the poor relation, especially when my sister in law came over to visit, usually on a Wednesday when I had a sleep in, and looked at everything in our flat to see what we were spending money on. She queried my hand creams, mostly gifts, and anything she saw that did not fit with her idea of Christian values. She used soap and water on her face. As I used eye makeup I needed makeup remover. Another wasteful item apparently.
Just before Christmas we decided to invite a few people from church with no family around for Christmas Eve drinks. We had bought the snacks and D always had a supply of beer and wine. Miyoko helped me clean and tidy the flat on the Wednesday so it was looking very welcoming. It had a huge lounge dining room with a sunroom attached. D had a table in there which he used as a desk for his writing. He was writing another book, having had trouble writing poetry that year.
I was at work til fairly late on Christmas Eve as A was preparing her staff for the Boxing Day Sales. The children were also very excited and happy, I was having a fabulous time with them as everyone was unexpectedly friendly when out on our walks. The spirit of the season really being in evidence. Eventually A came home and D picked me up in our car. When I entered our flat I was stunned to see that everything was ready for the get together.
All our lovely wedding gifts being used as platters and for the wine etc. Some things we had never used before. I almost burst into tears. I had really really wanted us all to do it together. Our first Christmas together, in our home, even if Sue was paying for it. I threw my things on a chair and went into our bedroom and cried. D came in and was really angry with me. Or hurt with me would be a better way to put it. It was as if I had hit him. He said they did it to help me as I was working. And that I had not appreciated it was practically sinful.
I was feeling a bit unwell in the tummy. I had recently nursed my boys through Campylobactor, a notifiable food poisoning. A had been dreadfully upset leaving them but when she saw R crawl into my arms and me rock him she left, crying. She said later that my skills kept them out of hospital. I had to keep fluids up to them as the risk of dehydration was so high. So I was appreciative of the thought but could not get through to D how I felt. He was so hurt. Betrayed.
Miyoko ran me a bath using some lovely bubble bath from Marks and Spencer’s and said she was so sorry. Two words was all it took. I hugged her and cried. She said “please Kate, you know if you cry I will lose it. I love you and hate to see you cry.” So I controlled myself, she had seen me weep bitterly after my father refused to come to the wedding. I had asked him twice and then got the message, but Miyoko was devastated as she knew it took a lot to make me cry.
I dressed and our guests came and we had a lovely time spoiling them, of course D invited his sister and brother in law and there was a lot of golly and gosh and other strange English words going on. Sue did not come as was disgusted with us for not keeping Christmas to family. What she refused to accept was that my family was the other side of the world, and these frigid strangers were not my family, and never would be.
Once the guests had left to go to other parties Miyoko and I washed and tidied up. We went to our rooms, D was in his office / sunroom so I changed and went to bed. After a while I started vomiting, then had shocking stomach pains. It lasted through the entire night. By the morning it was so bad D called our GP who came straight around and gave me an injection. He requested stool samples and said it was likely to be what the boys had been through. It would take time, and a quite a while to recover.
D went off to morning service with Miyoko and then asked if I would be okay while they went to lunch at his sister’s house. I was so ill I had no fight left in me so I said fine. Enjoy. When they left I was very distressed. Our first Christmas together, a huge fight on Christmas Eve with a husband who seemed to have no empathy at all and then I was left alone, proving that, in a strange country, on Christmas Day. I think I was too hurt and sick to cry. I was constantly on the toilet, though the cramps had eased with the medication the doctor had given me.
They came back around five and wanted to open their presents. I was in no state to do the same but was happy for them. I had knitted woollen leg warmers for Miyoko and a lovely jacket style cardigan for D. They were very happy with them though Miyoko showed me one of the leg warmers was longer than the other! I was mortified until we both started laughing. Me holding my stomach as I did so. I promised her I would fix it.
Over the next weeks D and Miyoko were home a lot more as all the church activities they had been attending were closed for the season. They were constantly at rally’s in London or locally. Miyoko showing real signs of a solid future in the church, D still saying he wanted one but not actively showing to any clergy that he was doing what needed doing to achieve that. I had actually had a meeting with our Vicar Clive as I felt terrible that I resented D being out so much when I was working so hard to put food on the table. He said it was not right and that David needed to support me more.
New Year’s Eve Miyoko braved Trafalgar Square. D stayed home and we watched it on television. I had been unable to keep any food inside me so was feeling weak and existing on special yogurt with live bacteria in it. Sue always went away over New Year with widowed friends. They generally chatted and drank for three days, great fun for them. D went over regularly to look after her dog and her pot plants.
Early in the New Year I went back to work and received confirmation it was Campylobactor, and would take some time to leave my system. The outbreak had been traced to birds pecking through the foil tops of milk bottles. I still could not keep anything in so was told to go onto thin soups, creamed rice and milky products. This went on for many weeks until I was finally able to tolerate more solid food.
Miyoko left us to go home to Japan. I was very upset seeing here walk through the gate at Heathrow, having an awful feeling I would not see her again. She carried an enormous sound system, and her guitar. When we next saw Anne all she could talk about was how bizarre it was for us to have a houseguest so soon in our marriage and how it would be much better for us now.
Around the same time I realised I had missed my period. Then another one. So we bought a pregnancy kit from the chemist and it was positive. D was excited but his mother was very vocal against it. Saying we had nothing to offer a baby. Anne was excited, saying God would provide. My employers said a baby would be good company for their little one once R was at school.
The GP confirmed my pregnancy and arranged for me to go to Ante Natal Care, especially important due to my Hashimotos being newly diagnosed. Everything went well though I was becoming more and more miserable with the cold and damp and D’s family. Sue kept telling me to stop talking about home. That this was home now, and she never allowed me to talk about my family or friends as that would unsettle me too. Stiff upper lip, the way she had got through the war as an Army nurse in Cairo. She had lost her first husband just after the war and though I very much admired her fortitude I found her attitude very inflexible.
D and I talked and he suggested he migrate to Australia. My parents would be his sponsors and he was sure he could get his old job as a computer data analyst with IBM back. I hoped so, though I had been shocked when I first came over to the UK to find he was not a computer programmer as he had said, he was untrained in fact and had been offered the job due to a friend from church.
We arranged Visas, went up to Australia House in The Strand and before too long he was accepted and we informed our families. Sue was actually happy, she said she thought Australia suited him better than the UK. Whereas I thought being away from his family was the best thing for him. It might help him grow up, he was like a big kid around them. Fun for a while but it got trying being pitied by everyone.
I started bleeding and was advised to have bed rest, and after two weeks I resigned as I still had no stamina due to the Hashimotos and the food poisoning. My employers wished me well but were not happy, especially since neither of them liked D. Though they were happy I was going home.
We visited D’s aunts and Sue’s many friends to say goodbye and finally we had packed everything and shipped our wedding gifts and some of D’s paintings and books to Australia. Then it was finally time to leave. Sue and Anne saw us off at Heathrow, I felt terrible seeing the real love and pain in their eyes, but we had our own lives to live, we had to make our own way together, or I would never be able to respect my husband.
After the service and photographs and reception we were finally able to think about getting ready to leave for our honeymoon. I changed in the not so glamorous toilets of the church hall. When I came out I gave the pearls back to Aunt Dot and saw the way she was eyeing my corset. I did not have to complete my question of whether she would like it or not! She grabbed it and held it to her, beaming.
I had changed into a sweater and a warm skirt and D into a sweater I had knitted him and jeans ready for the colder weather up north. I hugged mum and my grandparents and my flower girls and got into our little Morris Minor which had lots of beer cans tied to the front. And the usual ‘Just Married’ sign attached to them. We were excited to get away and needed to go before it was too late as we were aiming to stay in Nottinghamshire for the night.
Once we found the road north we took the signs etc off as we were being pursued by drivers who were actually holding tins of beer and drinking to help us celebrate. Total strangers. One guy in a Mercedes stayed with us a long way then waved goodbye. By then we were quite relaxed and chatty. Or I was. D rarely spoke unless it was about cricket or church matters, or his favourite topic, the Bible. We had not seen each other since the rehearsal and when I had seen him he was so stressed he almost knocked me over a few times. Being 6’5” to my 5’3” I had to be careful not to be underfoot.
We were very late, we were tired and almost went into a hotel in Peterborough but I encouraged D to try to get to The Blue Barn Farm where we were booked for the night. This was easier said than done though as it was very hard to navigate the empty dark lanes by night. As we were driving down yet another lane I suddenly had a flood of memory, triggered by the smell of the place. We needed to be near Mansfield, and we had been there when I was young, well before we migrated to Australia. It was incredible but I knew we were near by the smell, so reminiscent of my childhood.
Before too long we found the farmhouse. The proprietor had left the door unlocked for us so we sneaked upstairs, giggling, feeling like burglars. We knew it was a working farm and did not want to wake the farmer who had to rise early. After looking around we found an open bedroom door with twin beds. We could not find any other rooms with open doors so settled there for what remained of the night.
We woke early and made love on one of the single beds, and D made me laugh as he put my off white woollen coat on to go get a shower. Looked really freaky in it. I then went to get my shower and we went down to breakfast together. There was a fabulous spread and June the proprietor made us a full English breakfast. By then the room had emptied and she congratulated us and said she wished she had known beforehand as she would have given us a bigger room with a double bed. D asked her how she knew and she said as soon as we walked in it was obvious.
After that we headed north for Berwick in Northumberland. D had booked a cottage for three weeks. It had a lovely open fireplace which was needed as it was icy upstairs in the bedrooms. As it was so cold we made love in front of the fireplace quite often D seemed hypnotised by the flames and was often very loving and turned on when we were sitting in front of it.
From Berwick we visited Bamburgh Castle and Lindisfarne, where we had to drive across a causeway. I loved Lindisfarne, also known as Holy Island. We bought some gorgeous pottery from there and some prints to frame. I was entranced by the ancient weapons and by the formal and informal rooms inside the castles we visited in Nothumberland. We walked for miles through farmland to see ruins. I felt I could actually almost feel the spirits of the dead in those places. It was eerie.
The only issue I had, well two issues, were that D could walk for days on end, I was not able to do that due to my migraines. And a very personal issue, one that I had not thought of and wished that I had someone to talk to about it before the honeymoon. Everyone knew that honeymoons were a time to relax and enjoy each other but I was sore and constantly draining semen from the sheer frequency with which D made love to me. He was relentless and I could not have a bath several times a day. I did not think to wear pads or pantyliners. My undies were always sopping wet and I had irritation when peeing. I was actually really glad when my period arrived, and that is saying something as it was never a pleasant experience.
So my period and my birthday arrived around the same time. We were still in Berwick then. D bought me a pretty garnet pendant and earring set which I had seen in a jewellers in Bromley. It was lovely and the first jewellery apart from the ruby engagement ring he had given me. He also gave me lots of hand creams and talcum powder sets from Marks and Spencer’s. And my absolute favourite fudge, Cadbury’s fingers of fudge. I phoned mum in Chalfont St Peter as I knew she would want to wish me happy birthday. She started crying after a while and said she was going home. She was not going to wait til we got back so I could have time with her. I did my usual pacifying of her and saying it was okay but I was devastated. Mum and I had only had two short visits together. The day of the wedding, and when we saw her at the airport when she arrived, before she was taken home with my aunt.
A few days after that we drove up to the Scottish Highlands and stayed in a lovely bed and breakfast on the edge of a lake. With only a road between us. We also visited Loch Ness and Edinburgh, which I really loved. Then we headed back to Berwick where we were finding the cold in the cottage an issue and so we decided we wanted to get back and start our lives together. I had to go to work and wanted a few days in our new flat which Sue had rented for us while we were away. We had found a house to rent at a reasonable rate however D had a row of some kind with the owner who went to his sister’s church. So up until the wedding we had not known
whether we would be moving in with Sue when we got back or not.
When we arrived back D’s family thought us crazy to come back a few days early, and let us know it. We also discovered that Sue had opened our wedding photos and gone through them. She appeared baffled that I was surprised she would open something addressed to me. And actually said that I could not expect her to wait, surely?
I went upstairs and left D to go through them with her, I had wanted to look through them with my husband, and then with family. Seeing my mum in the photos without her being here was too difficult for me. The only fun thing about being there was that Miyoko had stayed there to keep Sue company after Jean left. It was lovely to see her again. She said however that it had been difficult, that Sue was very biased about the Japanese because of the war. And she made it quite clear to Miyoko. I was horrified, but it was a sign of things to come.