reflections of an interesting life

Suzanne – Forty Years On

Today is Suzanne’s birthday She would have been forty. wow Forty. I can scarcely believe it. So much has changed,

Forty years ago, I was very frightened , My father and stepmother dropped me off outside the maternity annex at midnight and I walked in alone. I was wearing my stepmothers fur coat and I remember it was cold.

I had no idea what to expect. I knew where babies came from and had seen diagrams of how they came out but I really had no idea how it felt physically. The staff of course knew I was an unmarried woman, with no partner but much to my mother’s disgust they put Mrs on the form. .It was policy to stop people coming in a trying to get new mothers to give their babies up for adoption.

When she was finally born, it was obvious there was something wrong but nobody told me anything. I remember demanding to see her before I would go to sleep. I thought she was the most beautiful thing I had seen.

Now forty years on, there is a hole in my heart. There is song that talks about a hole in my heart that goes all the way to china. It does and i don’t think anyone who has lost a child would disagree with that. But with Suzanne, I lost so much more.

As much as i miss Suzanne as who she became, i also miss what she could have been. I missed the relationship that mothers and daughters build over time, the talks, serious and not, and the future planning that never happened.

Most forty year olds are mothers. She could have given me grandchildren. don’t  get me wrong, I truly love the six wonderful grandchildren I have but i am so aware that none of them belong to Suzanne.

Probably the closest to that is Ivy. Ivy’s mother was pregnant with her when Suzanne died. It was at Suzanne’s 29th birthday lunch that Simon announced we would be  grandparents. There was general shock around the table, They had only known each other for a few weeks. I was thrilled and I looked at Suzanne. She  gave me a knowing smile.   Her eyes twinkled. She was already an auntie, Caleb was four moths old and she has his picture on her wall. But it was almost as though she knew this baby would be special.
She died five months later, while we were visiting Simon in New Plymouth. I believe she choose that time because we were with her brother. Coming home and the tangi that followed was a blur. There just didn’t seem to be enough time to say good bye. But we had no choice.

When Ivy arrived, she was beautiful. I could see Suzanne in her, And when her mother left her and Simon met Cassie, I had a feeling that somehow Suzanne had arranged it. Somehow she was looking out for her niece. She knew that Ivy needed a mother and Cassie would be perfect and she is. Simon and Cassie had two more darling little girls.She would have so loved them. And their cousins..

So here I sit, tears falling thinking of my girl missing her, remembering her and thinking of all we had and all we missed.And though she is not here in body she will always be with me.

Today we are planning a family dinner. Simon and Cassie and their girls, Jenni and Glen and her three and we will remember the person missing from our family today. We will celebrate her life with joy.

I am sure it is what she would want.



Aunty Sybil

Marty had stopped smoking. I still had the odd puff only when around other smokers but that was generally more out of habit than addiction. It made a huge difference to our budget. When I think of it now, I can’t believe wasted so much money. My step father Bill, had stopped years before and he used to put fifty cents in a jar everyday. He would say things like, smoking brought me that and point to his boat or some other luxury. Financially we were going to be so much better off.

Life was looking up. Jenni was still with us, doing things I never knew 14 years old did, certainly not in my day any way. Simon was settled in school and Suzanne was doing fine at IHC. I still felt guilty as hell that she wasn’t home with us, but I knew it was a better place for her.

One day I visited her at school and they went on a class trip to the nearby intermediate.  As we walked up the drive, some one on the neighbouring property called out to me. I looked up and saw my Aunty Sybil. I waved back and promised to visit her.

Aunty Sybil was my maternal grandfathers baby sister. She was a real character always smiling and laughing. She married George who had fought in the war and settled in the Wairarapa. When they retired they moved to Welcome Bay and when my family were together we would visit them. They had an orange orchard. When ever we went we came home with lots of fruit.

When my parents separated, he lent Dad a trailer to take Mum’s furniture to Levin. On its return, he threatened my Dad with a shotgun. That is what Dad said any way. He certainly got the impression that my mothers family weren’t happy with him. I have no idea if it was true. I always thought Uncle George was lovely.

Aunty Sybil was a widow and she lived in a huge house with her daughter Cynthia. She also had a son Warren who I remember from my childhood. His nickname was Buff or Bluff, I could never remember which. He was the same age as Mum’s younger brothers and spent a lot of time at the farm.

Aunty Sybil had been a tap dancing teacher and the only person I knew that could dance the Can can, though I must say I never saw her do it.  Mostly I remember that she was very like my grandfather to look at, and she laughed a lot.

So I went to see her. Her place was amazing, full of interesting antiques and knick knacks. She had a corgi who used to fart something chronic. When he did, she would complain about the smell and shame him outside.

She was so interested in what I was doing and I would visit often. We would drink tea and talk about the world. Later I would take Marty and Simon to see her. She was always open and welcoming.

She was one of the few people I missed when I left Tauranga. She died suddenly of stroke. Marty and I were able to come to her funeral. It is one of the few extended family funerals I have attended. And it was fun.

Just the way she would have liked it.


School Daze


We moved a lot when I was a kid so I went to four primary, two intermediates and four colleges. I left school at sixteen with no qualifications. I had had enough.

It wasn’t that I didn’t like school. I love learning, I still do but I was always the odd one out, the new kid, and I never seemed to fit in. I am really envious of people who have school friends, people they have known for years. I never had that luxury; in fact I really don’t remember anyone from school except the bullies. They are ingrained in my soul.

My favourite school was Boddytown on the West Coast. I won a bet once, because someone didn’t believe me when I said I used to live there. No one they said would call a town after a body.  But they did. Actually it was a Mr Boddy   By one of those amazing coincidences, I met his granddaughter in Rotorua in my early forties.  She was the only person apart from Coasters who had ever heard of the place.

There were 23 houses in Boddytown and two farms. One of the farm houses sold lollies the nearest thing to a shop. It was in a deep valley surrounded by bush. The one road came from Greymouth and went further in to the sticks.

Boddytown School had one classroom. It was the only time I was top of my class. I was also bottom of my class. I was the only one in it.  There were 22 pupils at the school from new entrants to standard six and I was in standard 5.

The teacher Mr Hopkins was firm but fair. In the winter the fire was roaring by the time we got there. In summer we swam in the pool. I did quite a bit of self-directed learning, including spelling and I tried cheating but Mr Hopkins had seen that before. He soon got me back on track.

I played my first and last game of rugby there. I got caught up in the scrum and got kicked a lot; decided that it wasn’t my thing.

Looking back it was quite idyllic. It was a ten minute walk to school.  I learnt a lot that year.  And I didn’t feel as invisible as I did at the other schools I attended.

Unfortunately it only lasted a year. That summer we moved to Tauranga.

I met someone from the coast a few years back and she told me the school had been closed down.  I felt sad. It was a great learning environment.

Becoming Smokefree

Once Simon was at school and the girls had left home, I decided it was going to be time for me. I was still doing the course at Kohanga and the attending polytech but I wanted more.

I decided that perhaps I should study again, perhaps do a University degree. I had studied extramurally before, before Marty that is and I had really enjoyed the challenge. Of course money was tight. In those days living on one income was a lot easier. I still had plenty to do, and of course I lost the home help when Suzanne left.

Now I was driving I would go up to Suzanne’s school and be parent help and of course I was parent help at Simon’s school as well. But there would still be time for study so I started to look into it.

Fate had other plans however. Jenni came back. She was unhappy. She really wanted to live at home with her mother but she had other ideas. As soon as she was able she sent Jenni to Solway College in Marsterton. Jenni hated it. After a term break her mother put her on the train. She got off in Hamilton and refused to get back on the train. The police were called and she refused to speak to her mother demanding her father. He got a call at work and he went to Hamilton and picked her up. She moved back in, full of teenage rebellion. It wasn’t pretty.

And then Marty got sick. He was a heavy smoker, had been since he was thirteen. over thirty years of smoking. I smoked too, no where near as much. Thinking about it, I have no idea how we could afford it. But we always managed to throw a carton of cigarettes in when we got the groceries.

One day he lit up a cigarette at work, took a drag and hit the floor. He was sent to hospital.  He was told to give up smoking or he wouldn’t see his son reach ten. It was a powerful incentive. Back then no one talked about patches or gum, it was cold turkey. Marty had tried to stop before but just never quite did it. It was just so hard.

But with that incentive he stopped immedicately. I had seen withdrawal from herion on TV. This was so much worse. He would come home from work and curl into a feotal position on the couch. He barely ate or slept. I got so desperate that I rang the doctor who came that evening. As I have said, Dr Morgan was strange. He looked at Marty and said, I can’t do anything for him except pray and he got down on his knees and prayed very loudly.

The withdrawal continued for six weeks at least. I had a cigarette hidden in the hall cupboard and I was so tempted to pull it out and shove it in his mouth. But I didn’t. I knew he could beat this. And I was going to support him every inch of the way.

One day,  he came home from work and he looked so much better. The tension had gone from his face. It was my birthday. he looked relaxed and happy.

He smiled at me and said, I did somethiing today. I looked at him and said, yeah your bastard you have had a smoke. Yes he said, I did, i wasn’t going to let it beat me. So I brought a packet and had a smoke. It tasted awful but I made myself smoke it all. I felt dizzy and sick but then my head cleared, I stood up and walked over to one of the guys and gave him the packet.

I will never ever smoke again, he said. I knew he was serious. I knew he had beaten the addiction.. And I knew he would be fine. It was the best birthday present ever.

So for all of you smokers out there, yes it is hard to give up but it can be done. And it is worth it. Do it for your family. Marty did.

Agenesis of the Corpus Callosum

When Suzanne was born I was told a variety of reason why she had a disability. My brother said it wsa gods punishment for my evil ways. my mother felt it was because I was lifting old people when I was I pregnant. Since I had had a difficult birth, I thought she recievved brain damage then.  Basically we had no idea. It was just the way she was.  I didn’t really care. Nothing could be done so what did it matter why.

Of course technology had moved since she was born and Waikato eventually got an MRI scanner. A scan was organised so they could have a good look at her brain. MRI’s are amazing but one of the most important things is, you have to keep still. Prue took her over to Waikato and told her that she needed to keep as still as possible so they would really get a good picture.  I had my doubts but Suzanne stayed still enough and the pictures were brilliant.

And then we knew. Suzanne had agenesis of the corpus callosum. The corpus callosum is a thick band of nerve fibers that divides the cerebrum into left and right hemispheres. It connects the left and right sides of the brain. Suzanne didn’t have one.  For some unexplained reason, it never developed. I remember looking at the scans, and it wasn’t there. I read up about it and some people have partial agenesis with few effects and they never know it unless they have an MRI.

It explained so many things especially the way she would look at her hands as if they didn’t belong to her, Because of the lack of connection between the two hemispheres she probably didn’t realise they were hers. It also explained the sensitivity of her face and her seizures.

I knew what was wrong. I could verbalise it and explain it to people when the curious asked, it was no longer a mystery. Agenesis of the corpus callosum. No one had every heard of it and few people knew what a corpus collasum is. But it didn’t matter. it was a diagnosis, And I told everyone.

I went to an IHC conference with a group from Tauranganot long afterwards. Mum came and looked after the house while I was away. My first conference. It was amazing. I met so many people. Bill Rowling was there and well as JB Monroe. I was totally buzzed out.

I went to lots of  workshops including one on genetics. I wanted to know if Suzanne’s disability was connected to those of my sisters. When question time came I stood said  that my daughter had just had an MRI and it was found that she had agenesis of the corpus callosum and I wondered if it could be related to a neurological condition or learning disability with epilepsy. The doctor said that it was probably just bad luck and sometimes members of the same family can have a lot of things wrong and it isn’t related at all, just bad luck.

After the session finished, a woman came up to me. Did you say Agenesis of the Corpus Callosum and I said yes. She said, my son has that. You are the first person I have ever met who has a child with that. Her son was older than Suzanne and his disability was not as severe. He was disagnosed years before in some kind of dye test long before MRI. We talked for ages like kindred spirits and we exchanged details and kept in touch for a long time. It was such a comfort to know there was someone else out there. This is long before Parent to Parent.

When I think about it now, I don’t know why it made a difference but it did. Perhaps it was just giving it a name.


I have just finished my housework for the week, there is only two of us so I only do it weekly, unless it looks like it needs it, but fortunately it doesn’t very often.

The worse thing about it is, it is totally monotonous and predictable. I usually do the same way every week though it depends on whether Marty is up, where I actually start. I do it all in one go. Change the bed, dust,  tidy, water the plants, clean the bathroom, then give the kitchen a got going over. Don’t get me wrong, I do clean the kitchen more than once a week, I generally do it after we eat and the dishwasher goes on, generally after breakfast.

I am talking more about cleaning the cats area, and the rubbish bin, sometimes even the microwave. I leave the oven to my beloved.

Once I have all the floors ready to clean I like to get on with it. I use a long extension cord so I don’t have to change plugs and I get quite cross when the cord gets caught up and I have to stop. I just want to get it over with as soon as possible. I also have a steam mop, it means I don’t have to use chemicals and it is much easier to use than a conventional mop.

Boy am I going to be in trouble if the apolcolipse comes. I really can’t imagine life with out my appliances. I think about my pioneering anchestors. They  washed everything by hand in fact one day was dedicated to washing. Now I just bung it all in the washing machine and leaving it to do all the work.

Today I also did four loads of washing and the last of it is about to be hung out. I wash most days but we have had a few days of rain so it has piled up, I hate dirty washing, and I make sure it is never lying around, it is either in the basket, the washing machine, on the line or put away. It is one my things. My friends and family know how untidy I am but I have to be really unwell to have dirty washing lying around.

Rain is threatening but I hate using the dryer.  I prefer my clothes  in the fresh air. There isn’t any sun but the wind is blowing so hopefully before the rain comes it will be dry. There is nothing that smells better than fresh dry washing and as far as I am concerned any day you get washing dry is a good day.

As modern women  I don’t think we realise how lucky we are.  Housework was a full time job, everything had to be done by hand. They also had to beat mats and cook over open fires or use a coal range. I always wanted coal range, but I couldn’t do without my fan bake oven. It was one of the first things I brought for this house, I couldn’t cope with an ordinary range.

There were no takeaways and most people baked everything they needed.  My great great grandmother lived in the back of beyond, she was lucky to get to the shops once a month to buy essentials, if you ran out of something you were out of luck.  Of course as well as housework, there was a garden to tend, which provided so much of the food they ate. And of course chickens for eggs and a house cow for milk.  They also had to preserve any surplus for winter.

Honestly thinking about it, I have no idea how they did it. Admittedly they didn’t have the distraction of television or the internet. Evenings were spent sewing, making clothes for the family, sometimes all by hand as most people couldn’t afford a sewing machine.

Life may have been simpler but it was definitely a lot harder.

I am so grateful to live in modern times. But it is even nicer  to look around and see a clean house and know I don’t have to do anything for week.

© Barbara Hart 2014

My borther the boarder

After Suzanne and Jenni left home we had a share room.  Simon was still at Kohanga and I was out during the day.  My brother rang out of the blue. He had separated from his wife  and  needed a place to stay so he moved him.  I found this really amusing, he had always said that God found him his wife, he was still a Christian at this stage.I still had vivid memories of his wedding when the minister raved on about how this marriage would never end in divorce. My father sitting in the front pew with his two wives and ex-mother in law was not impressed.  I always said that I would find my own man, which I did and my marriage has stood the test of time, where as his have not.


And he needed somewhere to recover from his injuries, He was driving his motorbike at the mount and he failed to give way and hit a car smashing the windscreen. The woman driver had quite serious facial injuries and he had some minor leg injuries. He said it was fortunate that God was driving which is why his injuries weren’t serious. That made Marty and I laugh, surely God should be obeying the road rules.

He moved in to the spare room. One day he came home from church in a right state, He talked about hell fire and damnation and God’s wrath. I really thought he must have killed someone but turns out he took a woman home from church and had sex with her. Her name was Jan. I knew of her because she was a friend of a friend.

A few weeks later, he came home and said that he thought she was having  a miscarriage. Where is she I said, and he said home on her own. I almost lost the plot. How dare he do that, she needs to see a doctor and he should bring her around here so she wasn’t on her own. He brought her home and she was very tearful. I gave him a spare mattress so he could sleep on the floor and we went to bed. In the wee small hours they woke Marty up because they were having sex. I couldn’t believe it.

I got up the next day and took Simon to kohanga, not even saying good bye to them.  I had a cold that didn’t help my mood. When I got home later, he told me that a minister was coming to pray for them. Marty came home in the middle of it all, there were praise gods and hallelujahs coming out of the room.  When the minister left, my brother came down the hallway smiling broadly. He said that it was allright, God told them that she wasn’t pregnant so everything was going to be fine.


He took Jan home and said that they had talked and they were going to get married. He went around all the local churches to see would be willing to preform the ceremony. . A church agreed but he was to have a curfew of 10pm and he would have to live with a church member. the curfew was to stop any sexual activity.

Marty and I laughed so much, obviously they had never heard of people having sex before ten.  Hadn’t they heard of morning glory and afternoon delight.

The best thing was of course, losing our boarder. And to this day, we have never had another one.


10 Years On

I woke up this morning determined i wouldn’t cry today, but it didn’t work . Today is the tenth anniversary of Suzanne’s death and since we don’t live in Rotorua now I can’t go up to the cemetery to vsit her grave  and lay flowers. it is the first year I haven’t been able to do it, and it’s sad. Instead,  I am off to do CAB duty. I will smile and say all the right things and get on with my day despite the hole in my heart. It will never heal, but admittedly it isn’t as big as it use to be. Someone said that it stops being the first thing you think of when you wake up and so it is with me.

The thing about Suzanne though, was we always knew we weren’t going to have her for a long time. Doctors had no idea what her life expectancy would be, it was more of a wait and see and in the end I believe she chose her own time.

It was Simon’s birthday and he had moved down to Taranaki to be with his girlfriend who was pregnant with our second grandchild. We came down to visit. We had a lovely time, and I renewed my acquaintance with the mountain.  it dominates the landscape. I had secret desires to move down here. Marty certainly wasn’t keen and  I knew that Suzanne wouldn’t be happy about us leaving her so I put that thought on the back burner.

On  Saturday morning we were leaving and Simon was at work. I don’t remember why we went to see him before we left, it was out of our way. I left my walking frame in the car, we were only going to be a minute and the phone rang. It was Dot and she told me that Suzanne had died in the night. Marty and Simon could tell something was wrong. I was just numb. Simon cleared things with his boss and we left. We dropped him off and home and they said  they would follow us down soon.

We drove home, we didn’t stop. The only thing I remember about the trip was, the classical music on the stereo. The trip across the north island is isolated and every time I got cell phone reception my phone would beep with a new message. One said the police wanted to speak with me, Another said to go straight to the funeral directors

Back in Rotorua, we dropped off the dog and went to the funeral directors around the corner, The police were waiting for us, it freaked me out a little but it turned out, all they wanted was for me to identify the body. They gently explained that Suzanne would be taken to the hospital to be sent to Hamilton for a post-mortem the next day. They would send her back as soon as it was done.

One the formality was over, the funeral director took me into the next room. Choose a coffin he said. I looked around, it seemed such a stupid thing to ask someone to do. I picked the first one I saw. Then he asked if I wanted burial or cremation. Burial I said. Would you like to go to the cemetery and pick out a plot he said. I couldn’t think of anything worse, you choose one I said and please make sure it is easy to get to. I pointed to my walking frame.

We had dinner at Suz’s house, it was weird being there without her. And then we went home, it had been a long day and need to sleep.

I knew the next few days were going to hard. And they were.

Now ten years on, I think of her every day.  Simon’s daughter Ivy arrived the following February. Sometimes when she smiles I see a bit of Suz,

She would have loved being an aunty, she knew about Caleb, and had of photo of him on her bedroom, but she would have loved them all and they would have loved her.

Miss you Suz.

© Barbara Hart 2014



School Days

Both my children started school around the same time.  Simon turned five. He had a party at the kohanga with all his friends. It was a short trip to school, just across the playground. He had been quite worried about going to school, the new entrant teacher used to yell at the class. Simon always hated yelling so he wasn’t happy. But as luck would have it, she went on maternity leave a couple of months before his birthday and the new teacher had a much calmer approach to teaching.

His party was great, his Nana, my mum came and he got lots of presents.  There was no thought of him going further in Maori studies. He had had enough, visitors always made such of fuss of this little blonde pakeha boy speaking Maori. He was the first boy to move from kohanga to school.There had been older boys at kohanga but they had left kohanga before they started school.

He did cry a little bit on his first day of school but he settled in really quickly. He could read a few simple words and knew his numbers and colours in two languages. His transition was a breeze. He loved school and he loved to learn.

There were the days when kids walked to school on their own. It was such a short walk I was confident that no harm would come to him. One day he late. I got really worried, imagining all kinds of dastardly things had befallen him.  So I walked up to the school to see where he was, I found him inn the middle of the field, sitting under the goal post eating his lunch. He hadn’t had time at lunchtime  and he was hungry so he spread his jersey on the field and had a picnic.

Suzanne on the other hand was at CDU well past her 12th birthday.  It was set up for preschoolers but there was no where else for her to go. Of course, there were not many children like Suzanne in the community, particularly in her age group, as most were institutionalised.

Then the law changed It gave all children the right to attend their local school. Either that or attend a special school for children with disabilities. Special schools had been around for a long time. The special school in Tauranga is called Kaka  Street because it is in Kaka Street.  The school wasn’t new to me, my sister had attended it when she lived in Tauranga back in the late 60’s. they also had a satellite classroom at Simon’s school.

I really hate the word special.

Prue and I had discussion and decided that the best option for Suzanne was Kaka Street. The other children, she lived with were going to attend as well. I wasn’t happy. My biggest concern was how on earth would a teacher be able to look after her needs and what could she possible learn there that she wasn’t learning at CDU.

Most of the staff were applying for the new jobs at Kaka Street and that eased my fears some what. However as it turned out, none of them were working directly with Suz. Unlike Simon, there was no fanfare when she went to school, One week she was at CDU and the next she was at Kaka Street  The good thing was I could visit her often there it was not far away, just a short drive and I was always happy to help out when they needed parental support.

Her new teacher had no experience teaching people with severe disabilities, she was going to do it for a year it would look good on her CV. She did have a couple of teacher aides to help and eventually I got used to the idea of Suzanne being at school. They did the same kinds of things that other schools did, with a theme for each week and she had a range of activities that she hadn’t tried before. This included finger painting, She absolutely hated it. She hated getting her hands wet and sticky, and certainly let people now that she wasn’t impressed. I still have one her paintings. Eventually staff got the message so they didn’t make her do it any more.

She stayed there  in the same classroom with mostly the people from her house until she moved to Rotorua, but that as they say is quite another story..

The Dark Horse

I went to the movies last night and saw the Dark Horse. I went alone because it wasn’t Marty’s kinda movie. I didn’t cry which was surprising, given my mood lately, almost anything will set me off.

I met Genesis at consumer meetings and conferences. We talked about chess and how I was used to play. we were always going to play each other. I was never any good but I like that way the game makes you have to think about what the other player is thinking. He was soft spoken and quiet. I thought Cliff Curtis captured him well. If you haven’t seen the movie, then see it, it is truly brilliant.

I love the movies. As a kid, Mum would give us a couple of shillings and my brother and I would walk to the movie theatre on a Saturday. Two shillings also meant you got an ice cream as well. I still can’t go to the movies and not have one. The movies back then, were really old, I remember crying through How the West was Won. Of course before the main feature, there were the serials. The hero or his damsel in distress would be falling off a cliff or some other dire scenario and you would have to come back the next week to see what happened.

I really love the old musicals, my favourite is probably High Society. It was Grace Kelly’s last movie and it had Bing Crosby and Frank Sinatra in it. The plot was a little far fetched, Bing Crosby trying to win back his ex-wife. He would have been in his fifties but no one seemed to notice the age gap.  But the music is fabulous and included Louis Armstrong. It was pretty rare to see African Americans  on an equal footing to whites in American movies of that era. I watched it the other week in French in a vane hope to improve my listening skills but I really needed the  French subtitles to understand what was going on.

I am a real Bing Crosby fan now, when I was younger I thought he was old fashioned and boring but nowadays I appreciate his unique style. He was really one of the first pop stars. I think I learnt to appreciate him when I saw him on David Bowie Christmas special. I loved David Bowie and I remember watching the show and there was Bing. He sang an amazing duet with David, a Christmas carol. It is on YouTube and definitely worth a listen.  It is my all time favourite Christmas Carol.

But I love New Zealand movies.  I do like to try and see all of them.  They say the movies were invented  to be  as a way of escaping our dreary lives, taking us to imaginative places.

But the Dark Horse is a real story, about a real man who made a difference.  I was privileged to know him.

© Barbara Hart 2014