She was barely 2 years old when I saw something strange shining in my daughter’s left eye. I was heavily pregnant with our second child at the time, and my husband was away on a Rotary International Exchange Program. He had travelled for three months touring the USA with this program. I was a young mother of only 28 years at the time that this trauma came knocking on my door.
At first, I dismissed it thinking that it was nothing to worry about. Yet, each time she was looking at the light I could see something shiny and reflective on the pupil of her left eye – more like what one sees when a cat looks at a light. My husband being so far away meant I had no one to confide in; this was way before the era of cellphones. The Rotary Exchange Program which my husband had gone to attend in the USA was structured in such a way that he would move from one host family to another as a guest. This meant waiting for regular weekly calls from his end.
Eventually, the much-awaited call came through but my husband dismissed my concerns as nothing to worry about and since it concerned the eyes, felt that nothing could be done about it. There was also a general feeling or acceptance at that time that anything in the eyes could not be serious. Maybe it could just be a squint eye or what is called “tsanga” in Shona. This was based on the experiences of our short lives. Never in our wildest dreams did we expect anything serious or traumatic. We had only been married for three years and she was our firstborn child.
(Left) A picture at our engagement celebration and (Right) on our wedding day.
It was on the 7th of April 1985 that we as a young couple who had been in courtship for close to nine years tied the knot at Nyazura Mission in Manicaland. Weddings then were pretty simple and an opportunity for the wider extended family to come to witness the union of two people in love. This was five years after the independence of Zimbabwe when aspiring couples could have the luxury of two wedding receptions. The ceremony and first reception were held at the bride’s home and the second reception at the groom’s. Generally, there was not much fuss about a lot of things like décor, catering, tents, chairs, etc. It was meant to be a big wedding party for the large extended family and a very proud moment for the parents of the young couple.
The pregnancy of our first child came soon after the wedding. This being our very first child, both my husband and I agreed that I follow a strict diet recommended for pregnant mothers. Like most young couples, this was carried out to the book – drinking milk, eating fish every week, fruits, vegetables, etc. This was a pregnancy that brought a lot of joy to us.
Our daughter was born on Tuesday the 4th of February, 1986 at 10.55 am after almost 12 hours of labour. Her birth brought a lot of joy and excitement to us as parents and the extended family since she was our very first child. She was a big bouncy baby weighing 3.86 kgs and was the heaviest of all our three children. Her delivery was normal with no complications whatsoever.
The most striking thing about our baby was her beautiful dark eyes. She had no hair for almost two years, to which my now late mother, with the experience of having had 11 children, remarked that she would grow to have very long and beautiful hair.
From Birth to Diagnosis
One natural gift that has been given to most mothers is love – a mother’s natural love! Mothers seem to know best when it comes to their offspring. No one can stand between a mother and her fruit of the womb! They have the instinct to know that their baby or child is not well. In fact, we as mothers should pride ourselves as being natural doctors. When a child is not well, it is the mother who relates all information about the child to the doctor so that the latter can make a proper diagnosis.
My baby girl was born normal with all the attributes of a healthy bouncy baby. Going through all the normal tests at birth was the natural thing to do. Nothing was wrong with her at birth. Let me mention that when two people who are madly in love get married, they never in their wildest dreams imagine encountering serious health issues with their children. They think all will be well and all they want is to be together forever and to have a healthy family. They may not imagine unforeseen circumstances at this time and hold so much faith because of their love for each other.
My baby girl had a normal life from birth. She could sit at 4 months, was crawling by 6 months, and walking at 9 months! I breastfed her until she was 9 months old as she opted for the bottle instead of breast milk. She started attending crèche at the age of eighteen months. She enjoyed crèche but initially, she resisted it, like most kids. She experienced some bullying initially from her peers until her dad told her to fight back when provoked. She however took it to extremes and ended up being known for bullying others. During the early days at crèche, we would ask her what they ate for lunch to which she would respond “tadya [we ate] eat your food”, repeating what her teachers were telling them to do. She was a bright and lively child!
It was in June 1988 when I saw the strange shiny ring in her left eye – she was only 2 years old. I waited for a few days trying to make sure I saw correctly and giving some thought to it. After realizing that there was indeed an issue, I decided to take her to our family GP. This GP who had been our family doctor for a while failed to pick up on anything and dismissed it. It really needed careful examination in order to see the problem. The GP was now old and I gave him benefit of the doubt.
Back home, being a mother, I continued to observe the anomaly in her left eye. Mothers always look out for their children and want the best for them. I was only 28 years old and six months pregnant with my second child when all of this was happening. I thank God that He gave me the wisdom to pursue this issue and I decided to seek a second opinion.
The second GP was able to identify the problem quite easily and explained to me that it was called Retinoblastoma which is a cancer of the eye. This cancer usually occurs in children under the age of 5 years. My husband by now was back from his overseas trip. The GP referred us to a private eye specialist in the Avenues for confirmation and further investigations. The eye specialist also confirmed that it was cancer of the eye called Retinoblastoma. The only cure was to remove the eye! He explained to us that it can be inherited from previous generations.
You can imagine what this did to me and my husband. We were a young couple who had only been married for 3 years! This was devastating news and it was SHOCKING! So many thoughts came to mind and so many unanswered questions crept in. Questions like “Why us”? “Where is God while all this is happening to us”? “Is God punishing us for our past sins”?
We started to research this disease as much as we could. We did not find much information except that which we were told by the doctors – at that time access to information via the internet as we know it today was basically non-existent.
“But the Lord stood with me and gave me strength.” – 2 Timothy 4:17
I remember after receiving this devastating news, each time we got home, we would not have many words to say to each other. At times tears would drop as we watched our beautiful daughter playing around the house. To imagine that she was going to lose one of her beautiful eyes was just unthinkable. One evening as we sat looking at each other trying to absorb what had befallen us, my husband said some words which still ring in my ears today. He said, “Carol, whom can you wish to experience what we are going through”? To which I could not point to anyone.
No one can wish such a situation on another and it was upon us. We just had to pull ourselves together and pray for God to give us the wisdom, strength, and resources to deal with the illness that faced us, and to navigate these turbulent waters. We asked Him to provide the resources to take care of our daughter with the best possible health and education no matter what the outcome would be. We had also been told that the cancer could spread to other parts of the body including the other eye. That would result in our daughter becoming completely blind! This was indeed a traumatic experience for us.
Because it involved eyes and as you know, one can never have an eye transplant, the private eye specialist had to make sure of the diagnosis. The government eye specialist we were referred to who went by the name of Doctor Young, a Canadian, examined our daughter and confirmed our worst fears. Indeed it was the much-dreaded Retinoblastoma and the only treatment was an operation to remove the affected eye!
The next 4 weeks saw our daughter going through a series of tests and X-rays to determine the extent of the cancer in the whole body. Some of the tests required hospitalization. With a new baby, it meant that I could not go into hospital with her but my mother in law gladly accepted to take my place. My daughter had to have a lumbar puncture whilst in hospital.
At that time, she had a pink cot bed cover which she had received as a baby and had fallen in love with from the time she could recognize it. Everywhere she went she took it with her especially when it was time to nap or sleep. She called it “pillow”. This pink blanket gave her some form of comfort and peace. For all her tests she took it along, be it in the hospital or the X-ray laboratory.
When she had her lumbar puncture with my mother in law present, and her “pillow” of course, and the pain became unbearable, she cried out for her baby sister to come and rescue her. In her world, her baby sister was able to rescue her from the pain she was going through.
She had to go through a CT scan of her head at a later stage. Being a toddler, we were advised that she had to be sedated to avoid fidgeting and so she was given some medication to make her drowsy. The first dose took time to take effect and we were then told to drive around the block to lull her to sleep. This did not work. We drove around a second time but still nothing. The third time around we succeeded. My late elder sister came to be with us as we went through this exercise and it gave us comfort to have someone so close with us as this was a very trying time for us.
All the necessary tests were completed in about 4 weeks. The specialists were encouraging us to have her operated on as soon as possible to avoid any further complications.
The Reaction to the Retinoblastoma Diagnosis
News soon spread like wildfire among our extended family with regards to our daughter’s predicament. Most were in shock since this was unheard of in our families and wider community e.g. in the church family. Some called to sympathise; some came to visit and offer prayers to comfort us.
Others raised sentiments that she was bewitched as nothing like this had ever happened before. You can imagine what was going through our minds as a young couple. It was a lot to digest and take in at the same time. I thank God that young as we were, we remained calm, collected, and united as we focused on what we felt we had to do to save our daughter’s life. God gave us strength and wisdom to go through this painful experience together, and it helped strengthen our marriage too.
I remember one elderly relative tried to discourage us from going through with the operation. Being a young mother, I had to put my foot down and I told them, “For as long as my blood runs through the veins of my daughter, she is going to go through with this operation”. My resolve was so strong because the doctors kept urging us to get on with the operation to save the other eye. A date was set for the operation in the third week of September 1988.
Whilst all the fuss was going on about her operation, our daughter, small as she was at only two and half years old, also sensed that something was terribly wrong and that her parents were in so much distress and worry. Sometimes parents say things in front of their children which they shouldn’t, thinking that their children are too young to understand. This was not the case with our daughter.
One day just before the operation, I took her to the shops. Whilst driving, I was deep in thought about all the goings-on and maybe I was looking sad and down. To my surprise, my daughter just remarked, “ Mama are you afraid that I am going to die? Don’t worry I am not going to die”. This really broke my heart. It meant that at that age, my daughter understood what we were going through and had the courage to strengthen me. I felt that perhaps God was using her as an angel to encourage us and assure us about what was about to happen. We needed not to fear as God was going to protect her, of which He did. This may sound like fiction but this happened. Over the years, our daughter’s level of faith has continued to amaze us.
Once again my mother in law had to stand in for me when she had her operation because of my month old young baby. The operation was not major and went on as planned. She had her “pillow” with her throughout. It was such a painful sight when we went to see her after the operation; tears fell as we saw her but we were careful not to show our emotions in her presence. This was a heart-rending experience that I can never wish on anyone. It had to be done in order to save her life and most importantly the other eye.
Once the wound healed after about a month, we went to a recommended optician to order an artificial eye. This was the beginning of a series of such visits as we were told that her head was still growing and would outgrow her artificial eye every so often until the head stopped growing. Her pre-schooling had to be put on hold temporarily until she had the artificial eye.
(Left) with my firstborn daughter in the ’80s and (Right) again with her and my husband in 2018
From the time she had her operation until the age of about 7 years, we had to take her for regular checkups. It started as every fortnight, then monthly until it was every three months. This was always a very difficult time especially soon after the operation, but we had to make sure the cancer had not recurred in the other eye. During these visits is when we discovered that there were a lot more cases like ours. Some cases were delayed in being dealt with resulting in eyes being swollen or both eyes being affected. This was a very humbling experience which made us realise we were not alone in this struggle. Now when we see people in town with one eye, we understand their predicament.
Once we had the artificial eye, the next thing to deal with was to dress and undress the eye every single day by taking it out of the socket and putting it back after. This was a very difficult and painful exercise to engage in and it would be like a war zone once it was time for this routine. She would run away or scream refusing to go through with the process. At 2 years there was no way she would be able to do this alone. Eventually with time she got used to the process. It also meant she could not afford to be away from us or go for sleepover parties until such a time she was old enough to do it herself. This was when she was about 5 or 6 years old.
Life After the Operation
Life after the operation became almost normal except the time we had to go for checkups or get her a bigger artificial eye. She went through normal schooling and took part in all school activities such as sports, and extra curriculum activities.
As parents, we still had to watch out for any signs of illness coming back. I remember when she was about 4 or 5, she developed swollen glands on her tonsils. We went into panic mode. We thought this was a recurrence of the cancer. We quickly rushed to our family friend who was a doctor that same day. She examined her and found out that she had a toothache that could have caused the swelling. She counseled us and told us not to think of the worst each time she fell sick. This was a huge relief for us.
Regular checkups continued until she was just over 7 years old. The last time we took her, the doctor congratulated us and told us that our daughter may have lost her eye but thank God that her life had been saved.
The above narration of the trauma that my husband and I experienced cannot be wished on anyone else. It was not through our own doing that the events ended on a positive note, but we both saw the hand of God at play. My daughter has grown to be a young beautiful woman now and went through normal schooling right up to university.
Her eye issue may have brought in trauma to both my husband and myself early in our marriage, but we thank God for seeing us through this experience and as Romans 8:28 says, “And we know that all things work together for good to them that love God, to them who are called according to His purpose”. This narration indeed shows how things worked out for the good of our family. It strengthened our trust in God and made us realise that the children that God blesses us with may experience serious health challenges early on in their lives but He will always be there with them. May I encourage young mothers out there to make God their only hope and trust.
Psalms 20:7 tells us that: “Some trust in chariots and some in horses; but we will remember the name of the Lord our God.” Let God be your only hope.
In 2008 when I went to attend her graduation, my daughter confided in me that she could feel that God was telling her to do something that will influence people around her. When Sonia started the bAw blog some 5 years ago, I remembered her words and perhaps this is what she was talking about.
Mama Dubez (as she is affectionately known), is a wife and mother of three adult children. She is a former Town Planner, a businesswoman and a child of God. She currently lives in Zimbabwe with her husband and spends most of her days at their farm where she has retired and enjoys the clean air and quiet atmosphere it offers.
Her hobbies include reading, travelling, walking, cooking (especially trying out new recipes) and listening to music. She has found that she is passionate about talking to and counselling young people especially around relationships. She also enjoys being organized, planning ahead and entertaining guests. Some of her pet peeves include clutter and and an untidy kitchen.
Thank you Ma for sharing this story. It’s so surreal to read about your own journey in life, and it warms my heart knowing that God blessed me with parents who will love me through anything.
As always, thank you fam for reading. Do leave a comment for Mama Dubez and feel free to share your own experiences around parenting. Remember that we continue to pray for you.