Yesterday Jon-Daniel and I went for a long walk on the beach. The water was freezing but my feet adjusted to the temperature. It was great feeling the sand between my toes. Families were playing in the sand – very few people were brave enough to swim. There were quite a few surfers braving the cold water. The sky was clear and for the first time in many, many months I felt totally relaxed.
I thought back to Vic’s birth! I remembered a beautiful baby girl born with a mob of black hair. I remembered the rush of love that I experienced when I first saw her. I fell in love with Vic the second I lay eyes on her. When she curled her perfect little fingers around mine I was lost in the wonder of her perfection.
Vic was born 3 weeks early. She weighed in at 5.6 lbs. (2.54kgs). She was tiny but perfect! From the first breath that she took she ruled my life. Her first little outfit was a baby-pink jersey that a cousin knitted for her. Her clothes were doll-sized.
My Mom bathed her for the first month of her life. I was too scared! At 6 weeks Vic had one feed a night only…. She was born an angel. Vic had her first known fracture at 6 weeks… She started walking at 18 months; Vic built her first puzzle before she could crawl.
I remembered her gurgling and laughing. The minute she opened her eyes she would have this huge smile on her face. Her smile reached her eyes even then….
Vic never stopped smiling. She was a ray of sunshine. She never complained.
When I think of the cards the poor little poppet was dealt I realize more than ever what an incredibly strong person she was.
We were driving back from the first athletic meeting when she was in Grade 1.
“Mommy I want to ask you something” Vic said
“You know you can ask my anything you want…” I replied very upbeat. I had won the parents race and felt pretty good about myself.
“I know what you are going to say …” Vic said
I looked into the rearview mirror and saw silent tears running down her little cheeks.
“What’s wrong Angel?” I asked
“Mommy, why can’t I run like the other children?” she replied.
Vic was diagnosed with Osteogenesis Imperfecta at 18 months.
I was in total denial that there was anything wrong with my perfect child. My Dad was the only one who was brave enough to continuously tell me that there was something with Vic. The sclera of her eyes was blue and she fractured easily.
The grandparents conspired with Tienie (her father) and took her to the Freestate University. A professor assessed Vic and diagnosed Osteogenesis Imperfecta.
The family decided that Tienie had to break the news to me. I went mad with fear. OI is a very rare disease and in the pre-world wide web days, a library was the only source of information. I went from doctor to doctor begging for a cure or even a hint of hope that there was a cure in sight. The doctors told me I should wrap Vic in cotton wool and wait for her to die
Whilst all of this was happening Vic kept fracturing bones. She would bump her little sandal against the step and fracture her tibia. Whilst in Plaster-of-Paris she would re-fracture in the Plaster–of-Paris… We were treated like child-abusers at hospital emergency rooms and our neighbours reported us to Child Welfare.
Every living moment I would talk to Vic about how special she was; how frail her little bones were and how careful she must be.
When Vic was 3 years old a colleague mentioned a homeopath that worked miracles with rare and untreatable disorders… a Professor Majorkenis. I immediately made an appointment to see him. He practiced in Johannesburg, and as a small town girl I was petrified. Johannesburg was Sodom and Gomorrah!
The Professor was of Greek descent. He was of a short stature and spoke heavily accented English. His brown eyes were wrinkled, warm and gentle. His handshake was firm and reassuring.
He spent a long time examining her, measuring her electronic fields and all sorts of weird and foreign tests.
He made no commitment. He merely told me that he was on-route to Europe for an International Homeopathic Association conference and would discuss it with his fellow doctors there. (He was President of the International Homeopathic Association.)
I received a phone call from France a week later. It was the professor! The connection was poor and with his heavy accent I managed to hear that he was prepared to do experimental treatment and wanted to start in two weeks!
Without any discussion with anyone I resigned my job, phoned a colleague who has relocated to Johannesburg a couple of months earlier and asked him whether he knew of any vacancies in the glass industry and went home to break the news to my husband and parents!
The family went into high-energy planning. Vic and I would travel by train as I was scared of driving on my own and getting lost. Tienie would drive my car to Johannesburg two weeks later so he could celebrate Vic’s 3rd birthday with us. I would live with my parents-in-law, who had recently relocated to Johannesburg, and Tienie would live with my parents. He was still at University and could not relocate.
We gave up the flat, packed up our furniture and belongings and put everything in storage. Vic and I said our goodbyes to all our friends and then it was time to leave…
I remember my fear with crystal clear clarity when we boarded the train. I cried hysterically and clung to my Dad. My mom sobbed, and my dad wiped tears from his eyes telling me I must be strong and look after the “little one”. We would speak on the phone every Sunday…
The train slowly pulled out of the station, and I held my sobbing baby girl close to my heart. Her hair was wet from my tears. Vic was totally distraught. My parents, siblings and Tienie faded into the night as we sped towards a cure.