Raising children is difficult enough, let alone when you are faced with a sick child and still have to cope with the day-to-day challenges. Life takes on a whole new meaning. It places a great strain on a marriage and for many couples it inevitably ends in divorce. This is my story. It has been tough, to say the least and the outcome has not been what I expected.
My husband and I are both music teachers and we have a daughter of 29 years and a son of 25 years. When my son was born, I knew that something was wrong. Although he ate well and slept a lot, he had dark rings under his eyes and was very pale. At the age of 2 years, he started attending a playgroup twice a week so that he could begin to interact with other children. This is when the trouble began. He picked up every bug that was going around the playground and was often very sick. This meant numerous visits to the pediatrician and many courses of antibiotics. There seemed to be a problem with his lungs and digestive system and he was not thriving. When I expressed my concern to the doctors, I was told that I was being a neurotic mother.
Certain foods would cause such intense stomach ache, that he would scream in pain for three hours. I was desperate and nobody would listen to me. I researched and read extensively trying to find answers. At the time, I was teaching piano to two sisters whose mother was a physiotherapist and their father, unbeknown to me, was head of pediatrics at our main government hospital. I had read one of the articles he had written on his research into Rickets , (a condition that forms deformities in the bones as a result of a lack of vitamin D and calcium), and began chatting to him about my son. He suggested we come and see him. To cut a long story short, he diagnosed my child with Cystic Fibrosis (CF).
My son had been given a ‘death sentence’ and our world had suddenly come to a halt. There was no future, we could not dream anymore. My child was going to die! At that stage, treatment was experimental and most babies with the condition did not survive their first year. I don’t think I have cried so much in my entire life. We were immediately sent to the only doctors in Johannesburg that were treating patients with CF and so began our journey with hospitals, needles, medication and stress. After the news of the diagnosis, I received a phone call from a mother who also had a child with CF. He was already 12 years old. I was suddenly filled with hope. If her son could live to that age, then mine could too. I found all the centers around the world that dealt with CF patients and got as much information and advice from them. There is no cure for this condition but I knew that I had to keep my child as well as possible so that, should a cure become available one day, he would be able to benefit from it.
Part of the treatment at the time was to have intravenous therapy for a period of two weeks every three months. I have always been squeamish about blood and needles but I had to learn how to do the drip so my child could come home and lead a ‘normal’ life. It was fortunate that I could teach music from home and bring in an income. Thank goodness we had a medical aid that covered most of the treatments, otherwise we would never have been able to afford the very expensive medication.
The early days of his childhood were fraught with collapsing veins, a screaming child terrified of needles and many sleepless nights. Every little sniffle was potentially life threatening. My son soon learnt that he had to move away from other children that were coughing or had colds. We made him aware of the importance of washing hands and keeping them away from his mouth and nose. He has always been very good about this.
We had no family support. My parents in law had passed away within 6 months of one another. I had already lost my father and although my mother lived in the cottage with us, she had suffered a stroke and was paralyzed on the left side. Fortunately we had a helper to help clean and do washing and ironing.
We were so worried when it came for my son to go to school. How were we going to care for him for the major part of the day? We did not want him to feel different but at the same time he would be prone to infection and often did not have the stamina to do what other kids did. We decided that the staff as a whole had to be informed as to the nature of the condition. All we wanted them to do was to contact us immediately if they felt he was not well. By then, my son had a portocath the size of a coin, under his skin. This was to make intravenous treatments easier. However, it also meant that he was very vulnerable. Contact sport was dangerous but not impossible. When he played cricket and hockey, we made sure he had extra padding over the port, in case he was struck by a ball. He loved to swim, which was very good for his lungs and he was also good at athletics and soccer. The only problem for him was over-exertion. He would dehydrate easily and landed up in hospital a few times. Because he did not digest his food adequately, he had to eat every two hours. We would get up early in the morning to prepare proper cooked meals for him.
It was important for my son to keep fit and active in order to release any mucous from the lungs. For him, just being able to participate in sports was a huge achievement but he was determined to build up his strength. In high school, he was considered good enough to be part of the hockey, athletics and swimming teams , In South Africa, north of Pietermaritzburg, we have the Midmar Dam. In February each year, a race called the Midmar mile, is held and attracts many competitors. Olympic swimmers, international athletes and recreational swimmers come together to test their courage. It is a challenge and some have lost their life trying to cross the often choppy waters. When my son was 16, he decided to swim the ‘Midmar’ mile not just once, but 8 times! Only a few dare to do this.I was terrified that he would not even make one mile, let alone 8! He succeeded and has the medal for it and apparently he has a tick on his bucket list.
In his final year of high school, he completed his Grade 8 practical in violin and also played drums . He has the most incredible singing voice and played the part of Joseph in ‘Joseph and the Amazing Technicolour Dreamcoat’ and Ralph, in the stage production of the ‘Sound of Music”. He has also taught himself to play the guitar. I suppose there is not much chance of escaping music when both parents are music teachers but we never really pushed for him to take up an instrument. He often likes working out juicy jazz chord progressions on the piano too. When brother and sister get together and improvise, it is a feast of harmony.
Ever since he was little, my son has had the gift of the gab. An eloquence coupled with a sense of humour and empathetic nature, makes him a very likeable fellow. He strikes up a conversation with all and sundry and is a gifted speaker. One of the most memorable occasions was when he was asked to address the Old Boys’ Association of his alma mater. As an avid reader and extremely spiritual individual, it is no wonder he went on to University and has qualified with a Bachelor of Arts degree, majoring in English , Philosophy and Psychology and has also just completed his teaching Diploma and is doing an internship at a private school in Johannesburg.
For you, the reader, what I have written must seem like an absolute nightmare of a life. It was not. Yes, we dreaded the times my child was ill and when he had to have the three monthly drip sessions, but in between, you could say, we had a perfectly normal life like any other family. Our ‘normal’ was perhaps a little different but, hey, we all have our cross to bear. We were a close knit and happy family and made the most of life. The most important thing I think, was that we worked as a team. Duties were shared and we supported one another. It was love at whatever cost.
In 2012, my husband and best friend passed away from cancer. It breaks my heart that he was not able to celebrate my son’s 21st birthday and his subsequent marriage. Never in a month of Sunday’s did we anticipate that our boy would one day be married!
Looking back as a parent, life’s lessons have humbled me. My son has incredible faith and is always positive about life . He has come through incredible adversity with flying colors. He has taught me that nothing is impossible. Did we as parents influence his positive attitude? It is difficult to say. We have always had very open discussions with our children and have given them the freedom to make choices and accept consequences. All too often we tend to over-protect our offspring and by so doing, we deprive them of the skill to deal with the challenges we may face in life.
My wish is that my story will give you hope in raising your children. All too soon they grow up and leave the nest, leaving you to rediscover who you really are.