Remembrance Day

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.

 

 

Sickening Dread, And Pain

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.