I was born and raised in Johannesburg, South Africa. I am the middle child and I have two beautiful sisters. Belinda is my older sister and Louise (Lulu as she is fondly known) is my younger sister.
I was three years old when Lulu was born. Mum tells us that Lulu was sickly from the start.
She was born without a thyroid and back in those days, this wasn’t something that was tested for at birth so it was only discovered when she was three months old. The thyroid gland is needed for everything to grow in the body both mentally and physically. This was a huge shock to my parents as it meant she had an incurable disease and that she would always struggle.
Lulu had her first eye operation at nine months and she wore glasses from the age of two. She could do a forward roll without them falling off and it was very cute to see. Lulu went to a school for children with special needs. She loved going to school.
Around the age of three, Lulu started to get a series of colds and flus and complained of terrible pains in her legs. It got so bad that she spent three months in hospital while they did a million tests and finally she was diagnosed with Rheumatoid Arthritis – a very painful disease in the joints. Our family tried to carry on as normal but she was always in a lot of pain and we could feel that.
We went on holiday to Cape Town and I clearly remember Lulu not being well the whole time. Even with this in the background, it was a special holiday as a family. I guess we were trying our best to be normal and have a normal holiday. We came back to Johannesburg and had to rush her straight into hospital. After many more tests, we were told she had neuroblastoma. Cancer. She had a growth on her adrenal gland and it was spreading into her brain. Devastating is not even close to how it felt to hear this news.
The cancer had spread extensively, but they started treatment the next day. Lulu had a series of chemo treatments and she lost her hair. She had a Hickman line put in. It is a plastic line inserted into the chest under the skin and then up into the jugular vein and straight into the heart. This line is a life send and allows for blood transfusions, drug administration and chemotherapy to be administered without having to always look for a vein and jabbing needles into little people. I have in my mind a beautiful memory of Lulu standing on the steps of our pool, white as snow from literally living in hospital, with that great big bandage on her where the line went in.
My mother and father were absolute saints through this all. Mom would work all day then go to stay with Lulu in hospital through the night, leaving at 4am to come home and sort out the rest of us. If I think of myself doing that now, I could not fathom it. I know I would if I had to, but my Mom went through very tough years and it took its toll on her body.
During these years, my sister and I were farmed off to some friend or relative, so from a very young age I had to learn how to be self-sufficient. This had a big impact on the kind of person I have become. I didn’t really see this at the time and I was sometimes angry that my parents weren’t around but I now know that they really had no choice and they were doing the best they could in the situation...
An excerpt from "Made Beautiful by Scars- real women's stories"
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