The story of Jayaprakash
Pappa’s Journey
To all the gentlemen out there.
I would like to share my journey as a Pappa. But please, I am not pleading for any sympathy.
On the 18th Oct 2018, when we were still in Malaysia,my wife and I met a therapist to assess Arshan (our second son), to eliminate our concerns due to his delay in speech. Autism was eliminated, however, due to our parental instincts we still felt there was something amiss, therefore around January 2019, we visited the same center and a new therapist’s first observation brought us shivers. She adviced us to take Arshan for genetic assessment.
Moving forward we did the necessary appointments with the child specialists in Malaysia and met the Genetic Paed and Development Paed around February 2019. It was during at this time, we learnt of his preliminary diagnosis (not confirmed then), which was Williams Syndrome. We were caught off guard and utterly shocked. My palm was sweating, my heart was palpitating, and I saw Yaso’s eyes watery as the Dr explained to us about this diagnosis. Upon arriving home from the hospital, Yaso and I, just went up to our room and cried. We just hugged and cried and could not console each other, actually there was nothing for us to say at all. We were heartbroken with what Doctor had told us.
Myself for first time ever, I felt so devastated of not knowing what is this syndrome all about. Realising I am the type who always thought that I have answer for everything and I couldn’t take NO for an answer and needed everything to be on schedule without disruption, therefore I was angry with myself because for once, I did not have any answer for his diagnosis. I felt lost. I couldn’t think of a solution. I was worried and I was scared. I kept asking myself, what should I do for my SON?Is that the best treatment?
I tried to brave up by putting up a strong front but it was evidently not good enough. I have to admit, the journey from my office to my house is only about 7 minutes, but so often I would break down while driving home. I kept asking myself, why and how could this happen to me. I used to break down in the office, at home when everyone is asleep,in the shower.It was so painful to grasp and interpret the diagnosis. As A father I had to be responsible of holding things together emotionally at home to ensure that Aarav is also not neglected. Emotionally and mentally, I was drained at times. However, thanks to my beautiful boys, they never failed to amaze me with their characters everyday. They re-energize me when I am drained. I don’t know how this works, but it simply happens. Now, I am not ashamed to admit, my tears were for my Arshan. It was meant to reach out to the universe for HELP. I used to pray silently to my muthi (my late grandmother) and seek for her blessing and guidance.
As months passed by, Yaso and I had started to understand his diagnosis. We did thorough research about Williams Syndrome and attended to his needs by enrolling him for speech and occupational therapy. We also did not live in denial, we spoke to our family and friends and explained to them, and by god’s grace, my whole family, from my grandma,uncles,aunties,inlaws and cousins and friends were so supportive. We joined the WS network in Malaysia and started to share our experience with them as well. Our experience over the past 2 years has made us emotionally and mentally stronger as husband-wife,mother and father.
To my friends out there, that’s the whole reason, I have changed my style of socialising over the past 2 years, by reducing a lot on outings during weekends, because due to my work travel, being at home on weekends means a lot to me. I distanced myself from many people, because I did not want sympathy but I wanted solutions, and I was stubborn and adamant. It has brought the worse out of me at times, and what father’s need at times when we are faced with such unprecedented problem is a supportive partner. I have one who was able to bring me to my senses. I was like a loose cannon because I wanted the best for Arshan, until she made me realise that we are both in this together. She is my pillar of strength. Thank you Love. Aarav has also played a significant part in Arshan’s improvement too. Pappa is proud of you Aarav.
As a father, we want is the best for our family especially for our children. We would want to shield them from the worst of any kind and would want to give them as much love as we can. That is our fatherly instinct. Mamma and I will do whatever it takes to care for you Arshan boy.
Our son Arshan has improved tremendously over the months, he,dances,sings,runs and fills our lives with joy and happiness.The journey was challenging indeed and I am sure there would be more challenges ahead, but my wife and I would overcome each hurdle with grace and god’s blessings. Every little step, every little smile, every little hug by Arshan brings us sheer joy. He is a blessing in disguise to us all. He is the Nucleus of our lives.
I am sure he will continue to brighten our lives. I am proud of you Arshan. Pappa loves you loads. I will strive to be the best papa for you and Aarav.
This message is to bring the best out of each of us, to share our agony, reenergize ourselves, to know that, when u r on an uncharted territory, don’t feel afraid, but be brave to face your destiny.