Sandi Bennett

I had a challenging upbringing with a Mother being a very unhappy, bitter person. She used me as a release for her frustrations - not my older sister - I was used to hiding bruises, etc. - in those days there was no help for children...........
My father was away a lot on business.

My parents were divorced when I was 15 and my father got custody of me, but was still away a lot, so I learned to be independent. He got remarried when I was 19. I had wanted to go overseas, but needed to move out the house, so started working and moved into my own flat. Great fun - low paying day-job, worked nights at a steak-house to make extra money and still had energy to go gallivanting afterwards!

I worked at various places and jobs. I met Alex while he was finishing his studies and we went out for about 6 years. He had studied architecture, but was not cut out for office work. - He was offered a job as a farm manager in Caledon by a friend and he was on the farm by the end of the month! I was still working in Cape Town, travelling through to the farm on week-ends. We decided this was not working so the choice was to break-up, or get married.

In 1993 I went from a city girl to a farmer's wife in one step! I was already 31 when I got married so we tried from day one to get pregnant, but my first pregnancy was a still-birth. Alistair followed about 3 years later and then just over 2 years later I was pregnant again with twins! Josh & Zach were born about 6 weeks prem, but fortunately did not have to stay long in hospital. I learned the art of living with almost no sleep and still coping with a busy toddler, as the twins had do be fed every 3 hours for the first two months!

Life was busy for the next couple of years, between the farm, the kids and keeping an eye on Alex' parents.
His mom was bedridden, so I tried to help when I could to give his dad a break. She passed away in 2000, and in 2001 his dad had a bad stroke - so he also needed a lot of care.
As for Alex, he was very involved with windsurfing, and a lot of his free time was spent away from us.
In 2002 the farm was sold and the new owners went with their own manager. This left us without a home or a job. Luckily Alex's hobby was wood work and he already had some tools, so he started up a business in Hermanus doing cupboards and making furniture. We were fortunate to be able to stay in his dad's house in Hermanus.

I helped in the business with paint finishes, etc. This worked out nicely, while the children were small, because I could take them with me to building sites, or bring work home to do.
Money was always very tight, but being able to have the children at home with me was a privilege. Unfortunately Alex was spending more and more time away from home - almost all his spare time was used for his windsurfing, paragliding and friends.

In 2004 Alex started feeling unwell on a regular basis, and after tests he was diagnosed with colon-rectal cancer. He had to go to Cape Town for the treatments, including a stoma bag operation.
I carried on with the business in Hermanus while he was travelling back and forth for treatments.
There is no need to go into detail - what it means living with a partner who is going through treatment for cancer, especially one who is used to being outdoors, either working, or involved with his sports, and not stuck at home, or too sick to do much for himself.
The children were amazing - they just accepted that this is the way things were. The biggest problem was trying to keep three very boisterous boys quiet, especially in winter - so that their dad could rest.

Alex went into remission - in fact he did so well that they reversed the stoma bag. Unfortunately his reaction to having had cancer was to live harder than ever before. The next few years were rather chaotic and confrontational, especially because the children by now were old enough to notice that their dad was, compared to others, very uninvolved in their lives.

Possibly as a result of the hard living that Alex exposed himself to, the cancer came back with a vengeance in 2005.
It was now all over his body, and in an aggressive form. He went back for treatment but the cancer did not really respond. During the December holidays Alex's upper thigh bone just snapped.
From then on he was not really able to move around and for his last few months he was bedridden and on oxygen. He carried on supervising the youngster he had working for him. I went into work during the day, collected the kids and kept them with me, then dropped off the kids at a friend at night and stayed with Alex through the night at the hospital at first and then Huis Lettie Theron, until he passed away in 2006.

This is when I started finding out about how bad off we were financially. Any policy that I thought we had, had already been cashed in, and Alex seemed to owe every business in Hermanus.
The youngster that he had working for him also completely conned us, promising to buy the business and in the end just vanished, after damaging a lot of the equipment, leaving another string of debts. I inherited a huge backlog of debt and we were married in community of property- so I was responsible.

This was where my life lessons really started.
I had to learn humility by having no choice but to accept help, including food parcels.
I was always the one helping others. It is still one of the hardest things for me to do.
The school was amazing as always - they had been in the picture from the beginning - so they helped with keeping an eye on the kids in case any of them started playing up, or changing. The school also helped with parcels, etc.

I was very lucky to get a job about a month after Alex died as I had been out of the formal work-place for many years.
Even more fortunate, it doesn't involve week ends or public holidays, which in Hermanus is rare! The sad bit was that my boys actually then lost their father and their mother. They were used to me always being around, or being able to go with me after school if I needed to be anywhere, now they were suddenly at home on their own after school, looking after themselves. Welcome to ‘working-woman's guilt'!

The next year, Zach, my littlest twin, started behaving strangely. Alistair had received a lot of attention, particularly as his best friend, MJ, my childhood friends' son, had died suddenly of a brain aneurism. MJ was only 12 years old. Josh articulates his feelings, either at full volume, or with his fists. Zach has always tended to be the one that gets looked over, being the quietest of the boys.

Zach started complaining of constant head-aches, feeling nauseous and tired. I had to fetch him from school often. At first, we all thought he was expressing his grieving, not only for his father, but also MJ, who he adored, in his way, but his school work went downhill drastically. He started withdrawing himself altogether, just sitting by himself, or finding a quiet corner.

He eventually got to the stage where we just knew that his behaviour was not normal. I took him to our wonderful Dr Michele, a paediatrician in Hermanus.
She picked up that there was something neurologically wrong and fast-tracked us to Tygerberg hospital for tests. Alistair and Josh were again uprooted, and left with another of my blessings in Hermanus, Madeleine, so that they could carry on with school.
At Tygerberg we landed up, after many tests, in the neurology department. Zach's first operation was an emergency shunt to relieve the pressure on his brain from the build up of fluid in his scull.
One of the scariest walks I have ever experienced was going back up to the ward to wait at about 3 o clock in the morning after Zach was put under for the operation. The operation went well. Zach immediately felt relief from the extreme pressure, but we still had to wait for the results. It turned out that Zach had a craniopharyngioma - a tumour that develops around the pituitary gland. Not just one, but every spare nook and cranny in his scull was filled with them. The tumour is different to cancerous ones in that it does not form ‘roots', but forms self contained blobs that look like clouds. We then had to go onto the waiting list at Tygerberg for the operation. The next two months were spent going up and down to Tygerberg, booking in, then being told we had lost our slot to an emergency. Every time we went, Madeleine and another friend, Gail, took Alistair and Josh in Hermanus. Every time we got there, Jane and Shaughn, my friends who had just lost their son, were at the hospital, almost every night.

Our turn came and the operation went on for just over 10 hours. Jane was dispatched to keep me company and make sure that I had eaten something. We sat there praying that my son would live, while she had only lost her son a few months before hand....

The surgeons came back with big smiles on their faces - The operation went well and when they woke Zach up in recovery to ask how he was - typically he said "I'm fine thanks, and you?". Zach was put in Nuero ICU, which was an issue, as they were not used to stubborn mothers that insisted they spend 24/7 with their child.
The nurses kept throwing me out when they had something urgent to do in the ward, then I would march back in again. Amazingly, one can learn to sleep sitting bolt upright in a chair in a busy and noisy ward! Zach developed Diabetes Insipides as a result of the operation and as a result of trying to get the medication dose correct, he had a few ‘fits' and his heart stopped a few times. He was put into an artificial coma on life-support until they could regulate him. The doctors would not let me sit with him in case he heard my voice and tried to fight the equipment. I have never seen, even in the Karoo on one of those endless flat roads, a longer distance than the distance between the passage doorway where I was allowed to sit, and Zach's bed in the ward. The medication was stabilized, Zach was brought back again, and after one and a half months we were released!

While we were at Tygerberg for the operations, my father came up to Hermanus so that Alistair and Josh could stay at home. He sorted them out at home - all but the food. Barbara Lotz from the school had set up a roster for people to volunteer to send a cooked meal home for my dad and the boys.
I asked for a copy and her name was all over it, as well as a good few of the teachers as well as some moms.
I know my kids missed me while I was gone - spent many nights in the passage outside ICU - telling them goodnight stories or singing to Josh.

Although my work had kept my job open, they did not pay me for the time I was off -being just over three months in total. I had luckily taken no leave, so had some money for the first month. I would have been in serious trouble if it had not been for the Hermanus community. From a teenager who brought in her savings, to individuals, to a group of farmers in the Hemel and Aarde who covered the hospital bills, to the United Church in Hermanus who covered what should have been my salary - this community kept my family not only spiritually, but also practically alive - in a time when I needed them most.

There are on going issues as a result of the operation and the tumour. There are pieces of the tumour left in Zach's scull. They will grow back again in time. He will probably not live to be an adult. The Doctors can go in one more time - no more.
The tumour does not react to chemo, and it is unadvisable to radiate on a child's brain.
The shunt occasionally gets blocked and will also need to be replaced from time to time.
His eyes have been permanently damaged as a result of the tumour and the operation, so he has tunnel vision and double vision- and almost no sight in the one eye.

He developed Diabetes Type 1 a few months ago - typical Zach fashion - suddenly and full blown.
Again Dr Michele organised hospitals for us, again Jane and Madeleine helped with the kids. We are now learning all about crab counting, hidden sugars, and injections.

About a week ago we were at Groote Schuur for the growth hormone tests, also a side product of the craniopharyngioma. Test result was positive, so we are now on the waiting list for hormone replacement. There are only limited government grants for the hormone and it costs slightly more than I earn in a month!
Until he gets the hormone, he will carry on getting tired and cold and will not grow taller, but will get, not actually fat, but flabby.

Lessons life has taught me:

There is a big grey area between the knight on a white horse and the frog - that is where most husbands are - nobody said I was Cinderella, either.

In this community of Hermanus, and with a few special friends out of the town, it is flat impossible to hit bottom, or feel too sorry for one's self - because there are people who are determined to catch you if they see you're falling.

Bad things can happen to good people - and we may never know why, unless it is to learn by their example of how to carry on, like Jane and Shaughn, when we would have collapsed, or given up.

Life does not come with guarantees, you cannot fix everything, even if it involves your children.

Even if you are grateful beyond words for every day you have with your children, you will still lose it with them, big time!

Faith does not get shaken easily when you look at the positive. Learn to look for the positive in any given situation - it is there - even if you have to dig really deep.

You may never know why certain things happen - get over it.
We would all like to know the reason why, but as we say to our children when they ask, "because I said so, that's why"
Maybe our Father feels the same way when we keep asking him - it's not our job to know, it's His.

If one ‘bad' thing has happened to you or yours, it doesn't mean your turn is over.

No matter how many times you say in your head that things are not your fault - as my child having a brain tumour - in your heart you will carry on blaming yourself anyway.

What I know for sure - my children are the centre of my life - my faith gives meaning to my life - and that is enough for me.

No-one knows why Zach has to go through all he does, but I believe firmly that there is a reason why he was spared two years ago - even if I never find out.

He is a special child, who seems to touch most people he meets on a different level. His faith is unshakable.
He can even make his teen-age brother laugh when he doesn't want to! His brothers, Alistair and Josh can tear into each other, but when it comes to Zach they are both protective.
Apart from tiny bouts of jealousy, they have never resented the attention Zach has received from the community or me.

Sandi