Mar 21st is celebrated as World Down’s Syndrome Day. At first I did not understand how the date is selected. The 21st day of March (the 3rd month of the year) was selected to signify the uniqueness of the triplication (tri-somy) of the 21st chromosome which causes Down syndrome. My son, Shlok is born with Trisomy-21 diagnosis in Houston (USA) back in Aug 2009.
SHLOK - a very meaningful name and truly special person in my life who has brought immense meaning to my life.
With all the patience and resiliency like any other special family we strive to keep things normal with Shlok and within the family. But at times we falter and then it feels like raising a special child is like eternal Agni-Pariksha for the child and the parents altogether. Trigger can be internal - child, ourselves or external - apathy of medical and government support & policies and so on...As if it's eternal quest for special families to struggle, struggle and keep struggling.
So coming back on what Shlok brought to me. Interestingly enough he has brought S.H.L.O.K itself - Sense of purpose, Hope, Love, Objectivity and Kindness !!! ... Sounds like S.H.I.E.L.D from Avengers :)
Sense of purpose - Before Shlok's birth I was happy-go-lucky chap with aspirations to grow professionally and have a good life. With Shlok's birth in Aug 2009, life has simply turned upside down and he became epicenter of our lives. With God's grace, he did not have much health complications and we chose to move back to India from USA after getting early intervention in first 2.5 yrs. So with Shlok's arrival I started seeing purpose beyond good life. I want to bring meaningful change in special children and their families in some shape and form.
Hope - With delayed milestones, Hope becomes best ally in growth of our children. We as special parents, strive hard to fight for every damn little thing working round the clock bearing the onus of raising a special child with smiling face even at times crying inside. All because we hope that our child will also get equal right to live his life to his potential.
Love - As a parent love is what we expect in return from our children, be it special or normal. I can experience unconditional love from Shlok regardless of any situation. As special children have limited ability to take in the vastness of pragmatic world, there core remain relatively untouched and what they exhibit is purest love one can find in this world. Perhaps that's what keep us going in longer term.
Objectivity - Not that all is rosy and nice. With Down syndrome’s happy faces comes its share of challenges. By nature, most of the Down syndrome kids are obstinate and impulsiveness. Owing to these characters tics, at times Shlok becomes aggressive and difficult to manage. Those are the times are darkest of the dark and we feel hopeless and helpless.
Another area we have to face challenges day in and day out is lack of supportive government and medical policies. It is absolutely disheartening to go and visit public medical facilities for treatments, assessment or disability certificates. Not that the people working in the system are NOT good. There are multiple aspects like supportive government policies, enough and empowered staff and system-driven execution. This is NOT only limited to special children but really applicable for entire public health system. Not sure if the overhaul would mean partnering with private health care partners at some point. We are fortunate that we can afford private health services for Shlok. There are lot of people seeking help in public hospitals who simply cannot bear this burden. It's absolutely heart-wretching to see their struggle with raising special child while struggling even to meet the ends otherwise.
It seems like handling these situations objectively without getting frustrated is the key on the long winding road of turning our kids into a better person of tomorrow.
Kindness - I believe kindness is Down syndrome person's biggest forte. They are very kind to anybody and everybody without any vested interest. I would say they are rather role-models for kindness and surely a teacher for life.
So the Love and Kindness is what keeps me going through darkest hours ..SHLOK keeps me going through the tough times.