I am grateful that I have many doctors and surgeons who are very familiar with neurofibromatosis and my medical history, ever ready and willing to assist and look out for me when I need them even though the recent post-operative mishap at NIH was regretful and unfortunate, I am still blessed because I have better doctors and care team to fall back on. Earlier this week, Dr Lekovic received my latest MRI, reviewed it and provided his evaluation to me at no charge like he always did in the past, although I am not currently in his care. I have also sent a copy to Dr Friedman and Dr Giannota at KECK School of Medicine for their evaluations and monitoring. Dr Friedman is out of town this week but will look for it when he gets back.
They live and work half way across the world from where I am. But I can feel and appreciate their care and concern even from so far. Life with NF can be daunting and worrisome, but choosing the right doctors to care for myself has put much of my worries to rest.
I am also grateful that I am born an only child and my mother is still here for me at her age of 67. There are no perfect parents – my mother and I have been through many rough patches and tensions together throughout my lifetime. But despite it all, no matter how difficult I was at times, my mother never left me but continued to take care of me especially when I had no one else to rely on. I had heard stories of other NF patients being neglected or sidelined by their parents. I was lucky to be born as my parents’ precious child.
I am grateful that my mother loved to rescue abandoned stray animals and nursed them back to health. Not only did she demonstrate compassion for those who are in need of love to me, the rescued animals taught me that showered me with love too. They have always been here with me unconditionally.
I am grateful that my mother did her best to provide for me after my father suffered a stroke in third year of life. I am grateful that despite her emotional stress and little to no income, my mother still sent me to kindergarten even though she did not have early childhood education herself. She had to work all day and unable to take care of me, so she arranged for a babysitter to pick me up from kindergarten and look after me until evening. I am grateful that when I told my mother how my babysitter intimidated me, my mother stopped sending me there right away. I am grateful that my mother also sent me to mental arithmetic classes with her meagre income so that I might become smart and able to survive, even though my mother herself was not an intellectual person.
I am grateful that my father, despite being limited by his damaged brain, did all he could to care for me. I am grateful that my father sent me to and fro school, extra classes and social activities without hesitation. Sure, he was often late from over sleeping due to lung failure. But he always rushed to me once he woke up. I am grateful that my father always defended me whenever I told him that I was bullied. I am grateful that my father had taken me to visit many interesting places around Kuala Lumpur to spend time alone with me before his stroke. I am grateful that my father still took me to visit whoever I wanted to visit after his stroke. My father unwittingly showed me the value of kinship.
I am grateful to my aunty Ivy. Although I was not her own daughter, she took the initiative to protect my early childhood development, knowing how my parents were limited. I am grateful that she sent me to learn ballet, music, art, figure skating, tap and modern dances so that I could develop a strong sense of self.
Most of all, I am grateful to my mother for her prudent decision to teach me independence since I was four years old. After my father’s stroke, my mother helped her sister manage a furnishing business in Subang Parade. She would give me some money and allowed me to go buy my own food and even help her get groceries. Of course I did not know why she did that and often wondered why did she not care for my safety. I am grateful that because of my mother’s tough love I grew up with an independent character which so many admire today.