The story of Kenzi
80% Mortality Rate -these words from the neonatologists would constantly ring in my ears. Even though the light of my life , Kenzi , is already 5 years old, I would still hear those words in my head. Looking at her and acknowledging the physical scars on her body for the many battles she has fought and won. Seeing the determination with which she rises above the challenges with the captivating smile that the Almighty has blessed her with.
Macrocephaly-capillary malformation (M-CM) is a multiple malformation syndrome causing body and head overgrowth and abnormalities of the skin, vascular system, brain and limbs. The disorder has recently been attributed to a genetic mutation in a gene called PIK3CA. The mutation in M-CM is thought to always occur after cell division begins and is therefore very unlikely to be inherited. A mutation that happens at this stage results in different percentages of cells being affected in different individuals, so there is significant variability in how severely each individual is affected.
What are the issues that we struggle with in our daily lives parenting a special needs child ? Lack of public knowledge of the syndrome. Lack of knowledge of the syndrome amongst healthcare professionals in South Africa. Lack of easily accessible testing makes support for our family so difficult. Simple things like trying to find companies that specialise in diapers for a child of her size. Or that there are no public facilities that caters for a child of her age and size with diaper changes. Or how frustrating it is that there are no shops that are adequately geared to making special , wide brimmed shoes to accommodate a foot that is 2 sizes bigger than the other. I would need so much time to explain all the medical procedures and care she has received over the 5 years. I have spent countless days and nights watching her while she was in the paediatric ICU. I have survived for days on end with the bare minimum of sleep. I have cried, begged and pleaded with the Almighty to spare her and rather pass the hardships and difficulties on to me. I have spent hours researching articles and journals to educate myself to make the best, informed medical choices . If only I had a Dirham for every time I have been asked how I do it …..I would be a gazillionaire. How do I do it ? The question is , how do I not do it ? ” How are you so strong ” is another favourite . Do I have a choice ? Her level of care , health and development depends on me. On my health, on my mental health , on my strength. I am her voice. I am her representative. She is me . I am her. Our lives are so remarkably intertwined. All choices made have a direct impact in each others’ lives. And yet , I have to be aware that I am by definition , more than just Kenzi’s mother. I am Ashraf’s wife , I am also Ni-shaat and Aisha’s mother. I am an employee and an employer. Daughter , sister . I wear many caps and therefore have to assume responsibility for a variety of roles.
So Kenzi has M-CM. I spent so many waking moments playing the details over and over in my head. For days. For weeks. For years. The Almighty has uplifted me out of the deep pit of sorrow , guilt and frustration to understand that a diagnosis defines many things , but that it does not define love.
The Almighty in His Infinite Wisdom guided her to the name best suited to her – a treasure. MY TREASURE ! My treasure has taught me to love her soul and to look past her physical character. She has taught me to be proud of even the smallest efforts because she works hard for each and every milestone. She has taught me how to be content , despite communication being a real ,daily struggle. I have been handpicked by the Almighty to raise her . Love her . Cherish her . Cheer for her. I know He chose me because I am strong enough to deal with a cruel society who stare at her, who give us deathly stares while muttering hurtful things under their breath due to a lack of compassion and understanding. He has through this journey , pulled me closer to Him where I have a far more intimate connection with My Lord. He reminds me of His Power and Grace every day , for when I look at her , I am very easily reminded that Kenzi, born on 7 September 2017 , could have formed part of the 80% mortality rate statistic.
She is a true Warrior Princess .