When I was younger and I thought of the term ‘testimony’, I would think of those life stories where people would turn their lives around after drug or alcohol abuse, those who have broken free of the circumstances of their youth or those who suffered from depression. No consideration was made to think that I too had my own testimony. I always thought I would write a book on my experiences as a kid, not because it was traumatic, but because my spirits never wavered regardless of the things that worked against me. It took me 27 years to write this version of my testimony. Not because I didn’t want to write it, but because I thought I had to write a story or create a novel out of it, but no. Here I go, no story, no made up names, no little embedded fairytales. Just the truth, my truth as I know it.
A couple of months before having me, my parents found out that my mother would have to get a caesarian due to fetal abnormalities. In other words, I was special. It was my mother’s house doctor who happened to be testing a new instrument and picked up something no one else had seen. My mother’s gynecologist at the time told her that she could continue with the pregnancy, however, 1% chance of surviving my birth. I was born in May 1992. I am 27.
I was born with a chromosomal defect called Beckwith-Weideman Syndrome. This is a defect that affects 1 in 13 700 live births to different degrees. It has many symptoms, but the most evident one is that it enlarges the organs of the individuals affected. Sometimes, it is only the eyes or the ears, the hands or the feet or some of the more vital organs. In most cases these defects are outgrown in time. In my case, I was born with my heart, lungs, tongue, hands and feet enlarged. Above this, I had a clef pallet (with, as I would later discover, an underdeveloped soft palette) and gastroschisis (my intestines were outside of my body).
The first couple of years were tumultuous. In time, the rest of my body grew to accommodate my enlarged vital organs and the skin over my stomach grew to envelop my intestines. Where the skin grew closed, a bulbous enlargement remained. At this time my enlarged tongue and my clef pallet remained. At the tender age of 8 months old, I underwent my first big operation. The aim of this operation was to remove the enlargement on my stomach and to fix the clef pallet. The clef pallet was fixed, and my stomach was left with a large, hard skin platelet, which I would learn to embrace as my belly ‘button’.
At 5 years of age, I had my tongue reduction surgery. I will be honest, I have never been able to look at these old pictures of myself. They are probably the hardest childhood memories to look at. When I see these images, I cannot help to feel sorrow for the fact that such a small body had been put through so many things, but you know what? That little girl took it all in strides. Luckily that little girl has the most incredible parents any child can ask for and luckily, she has a little brother who always has her back.
At the age of 7 we found out that I had lost 50% of my hearing. This had a simple resolution. I got grommets and the problem was resolved. In my final year of primary school, we found out I had scoliosis. However, instead of my spine running in a “C”, my spine ran in an “S”. The suspicion was that this was residual of the Beckwith-Weideman Syndrome. At the age of 13, I had my back operation. I grew a total of 4 cm in a matter of 4 hours that day.
For many years after this, my medical conditions were subdued. That was, until my matric year when my belly ‘button’ started developing several hernias. So, to round up my long list of surgeries. In 2010 I had my hernia operation. That day the doctor fixed four hernias inside of me and removed my belly ‘button’.
This year marks ten years since that last operation. Through the years the scars I carry on my back and my stomach have become a reminder of the God’s greatness. They are evidence of the veil of protection and provision that He has placed over my life. He has blessed me with so many things, a loving family, supportive friends and unwavering faith in life and purpose. He has carried me and continues to fight with me at times when the odds are stacked against me. I owe all I am to His grace.
This all because He thought me important enough for His compassion long before I was an earthly consideration.