BY MOSES MUWULYA
“The period of greatest gain in knowledge and experience is the most difficult period in one’s life.” Dalai Lama quotes.
Any one facing hard times may not easily take this quote in good faith, but what remains of the two-year experience of nursing my cancer daughter, is enough for me to vividly testify the soundness of Lama’s quote
It is always joy when parents expect and finally get a baby. While this was the case, after God blessing us with a bouncing baby girl on 10 March 2013, our joy barely lasted two hours.
It was replaced with worry, tension and anxiety after the baby refused to breast feed from day one.
Her kind of deformed gum was too big to allow the nipple penetrate into her mouth to allow her suckle. We came to realize that she din’t even cry upon her delivery, as the norm is said to be.
On her hands and legs, her skin looked like that of an aged person. The midwife who had seen my wife through labor, despite her seniority, she could hardly avail answers
Her weak neck could turn to any direction. But I was acoustic that this was common among infants, but even after months, nothing changed.
This whole situation kick off a journey of worries, sleeping in hospitals, and visiting shrines and old ladies on the village to save the life of the baby.
We were totally ignorant about what was disturbing my newborn daughter Clair Kisakye Nabuuma, who we had nicknamed ‘Kasweet’, because of the pain she was going through that saw whoever felt pity for her to say “Kasweet nga kalabye n’obulumi!”
In hospitals, medics could abuse us for failing to breastfeed the baby, because to them, she looked overly malnourished.
“It seems your wife doesn’t want to breast feed for fear of her breast to lose shape” a nurse at Masaka Hospital told me, with little regard of first asking us why she was looking so.
But right from the day she was born, Clair had refused to suckle. She still refused to take anything nutritious especially powdered milk which we had been advised to give her.
We tried giving her nutritious foods through a nasogastric tube but nothing changed.
Heading to Mulago National Referral Hospital
When we went to Mulago National Referral Hospital, paediatricians failed to get a definite diagnosis of what was disturbing my daughter.
A ‘nurse,’ I don’t know if she was one, given the impersonators at the hospital, felt touched and told us about her friend who was a medical student but turned into a witchdoctor after what she called ‘family spirits’ stopped him from continuing with his studies.
‘Olwo lumbe luganda’ your daughter could be disturbed by a non conventional disease. That is why doctors failed to tell was is disturbing her. You go to him (Witchdoctor) he will heal her,” she said before sharing contacts of the witchdoctor
Desperate as we were, coupled with my then lukewarm faith. I religiously bowed to her idea.
At the shrine in the suburbs of Kampala the witchdoctors said: “I know where the problem is, but I will not tell you. Let us just focus on treating the baby,” he confidently told us amid total darkens in the shrine.
He gave us some charms, for drinking and bathing the baby. But nothing changed. In fact later, this scenario made me think that some witch doctors have agents in hospitals that spot for desperate patients like us.
Resorting to Church
A female pastor from one of Kampala’s pentecostal churches, looked at my daughter and told us one of her name ‘Nabuuma’, which my father had given her, belonged to a grand-grandmother who was ill hearted and that she was the one haunting her.
She told us to drop the name, gave us olive oil and salt that we had to smear her and pour the salt in the house to chase the grand’s spirit. Name dropped, olive oil smeared, and no change – things just turned sour.
Knowing she had cancer
In February 2015, she lost her sight and was taken to Mengo eye hospital. Where we were shocked to learn that had retinoblastoma (eye cancer) and could have contracted it before birth
According to American cancer society, retinoblastoma is a cancer that starts in the retina, the very back part of the eye. The eyes develop very early as babies grow in the womb.
We were referred to Ruharo eye center in Mbarara for treatment, and warned the baby could have her eyes removed to stop the cancer from spreading.
And indeed this is what the experts told us at Ruharo. The health practitioners urged they could carry on the surgery because she weighed less.
After a week, I fainted and was taken to a health facility. The nurse told me I had developed low blood pressure.
Struggle to see her gaining weight
As she put on weight, Clair had convulsions which reversed the process and also retarded her growth.
Thus, it was not possible to gain weight and in May she got worse and was taken to Uganda Cancer Institute, where they told us that she had developed secondary cancer. The cancer had spread to her spinal cord which led to severe convulsions
And after several months at UCI, we were discharged in early September and the discharge letter was shocking.
It read, “She cannot get enrolled on treatment and chemotherapy will just bring her more pain. It is better she dies without such pain”
Barely one week after discharge, Clair breathed her last on 29 September 2015
I believe with no doubt that this experience was an invitation to among others re-examine my spiritual life and also discover how my wife loved me.
After moving to shrines and the baby simply got worse, I even reached an extent of quarrelling with the witchdoctor who had told me he could heal my daughter and he said “May be God never wanted her to get better,” this shocked me learning that even witchdoctors depend on God.
I slowly moved close to God, started praying to God. I later changed prayers and asked Him not to take away the problem, but to let me to know what he meant in this.
Rev.Dickson Kimbujje and Rev. Fred Matovu then at All Saints Church of Uganda, Nyendo welcomed me every single morning. This relived me much and I started getting strong. They taught me saying I should leave the battle to God who created her and knows why she went through all that pain.
This was my turning point. I started getting close to God and by the time she passed on, I had already grown strong.
In fact, the day she died, I had the day before asked Him to take her.
Deep in sorrow, I told God “Father, it is not because I’m tired of my little angel, but I’m tired of seeing her in this pain. If you can take her and relieve of the pain, I will not complain.”
Canon Fredrick Kayondo, the priest who led the vigil service, summed it up, he said “If you really loved your daughter, you need to get saved because she has gone direct to heaven, and meeting her after death requires you to get saved, or else you will be in hell suffering and as she enjoys the comfort of our Lord.”
Slowly by slowly I became grounded more in the Lord and started singing in choir and on 1 Jan 2018, I proclaimed salvation after a powerful cross over sermon Bishop Henry Katumba-Tamale at St Paul’s Cathedral Kako.
From the condolences I received, I bough a Hymn book as a gift for my daughter. My decision to take on health reporting was fuelled by the experience. I feel I have to write about health in order to inform as well as advocate for better health care, especially when it comes to diseases like cancer.
Psalm 46 is a strong biblical passage, it reminds us that even in the face of trouble, and God is our refuge and strength.
God does not look upon trouble as we do. Where we see stress He sees opportunities. Where we see crisis, He sees growth and betterment. God’s purpose in times of crisis and trouble is to teach His children precious lessons. They are intended to educate, and build us up. And when we learn from them and ride out these storms of life, we will see the great promise fulfilled.