The unimaginable

It has already been two months since the unimaginable happened. That is, our son, Nikhil, passed away at the age of 12 on October 6, 2021. What started out as a routine hospitalization for children like Nikhil turned into a horrible cascade of events. At some point during that month, my husband and I both felt a pain deep in our gut that was telling us that something was different about this hospitalization. During most hospitalizations, even lengthy ones, Nikhil showed signs of resilience which gave us hope. But this time, we kept hitting roadblocks to recovery and we saw something different in his eyes. We painfully watched his condition deteriorate over a month while he slowly slipped away from us. With the help of the palliative care team at NYU, we kept him as comfortable as possible until his last breath.

As I reflect on our journey, I’m realizing that what I’ve heard about parents of children with special needs children is actually true. We first grieve the loss of the children we imagined and the life we imagined with them. Then, we enter a very special world in which our children grow, learn, and maybe even thrive. We realize they have their own way of developing connections with us and those around them. They may not walk or talk, but they FILL our lives with their unique souls that we fall in love with. So, if we lose them, we lose yet another child. This time, it is not a child that we imagined, but one that we actually hugged, kissed, loved, and protected with every ounce of our being.

We will continue to honor Nikhil by helping other families through this blog and other endeavors through “Team Nikhil”.