One year ago, on September 26, 2018, my sweet little Suvir took his last breath. He passed away in Sunay’s arms. In the last few days before Suvir’s passing, I often felt that his soul had already left his body. Even so, there was something distinct and different about the last breath that he took and in that moment I just knew… As I write this, tears uncontrollably rolling down… the memory of that last breath stirring, I have often wondered if that was the breath when his soul finally departed and if he did I hope he stayed around and looked down to find me looking up.

It was difficult for me to start this blog when Suvir was alive and it is extremely difficult for me to write this blog after his passing. Each keystroke is met with not just tears but memories of so much that has happened during his life and now even after his passing. All of which makes me painfully aware that my little baby boy is just a memory that has passed and is passing instead of memories that should have been making. I can’t bear this thought when I write due to which I don’t write and so I have not yet touched on some of the most important parts of the SuvirStory like the tracheostomy, gastrostomy and most importantly FOXG1. What you need to know for this post is that Suvir suffered from a rare neurodevelopmental disorder called FOXG1 which caused him to be severely delayed. It was a diagnosis we found out sometime after we were back home from CHOP.

Anyways, I mention this in this post, because on the day of his passing we made a decision that his life wouldn’t be defined by just suffering he experienced or the smiles and joy he provided us. It had to and needed to mean for something more. We made a decision to donate his brain to an organization committed to understanding the FOXG1 syndrome in hopes that this would enable a path to better treatment and therapies for the 400 patients currently affected and living with it. We also donated his heart valves which have already matched and have been transplanted successfully and making a difference in the lives of the two children who received them so they can continue growing and making the memories that our family stopped making a year ago on this day. It brings me peace and comfort to know that a part of my baby boy’s strong heart is helping someone else’s and through it a little part of him lives on in this world.

It has been a long year without Suvir around. It has certainly been very difficult with even more grief at times when you thought that wasn’t possible. There have also been some truly happy moments as well.

I am grateful for the support I have received from friends, family, acquaintances and even complete strangers. While I do smile, joke and have fun with people around, my greatest strength to fight off deep sadness and anger has been Rihaan! But when he’s tucked in at night, my mind starts thinking. Sleep has been hard to come by…tears too easy to come by. But my grief is healthy and perhaps I have begun to heal a bit. Over this past year, I have heard many times from folks now to give it time…and they think that they mean time will make it better but I have realized that time will eventually make your grief a part of you. The tears may never go away but at least slowly I am learning and accepting to allow them to flow yet sometimes smiling harmoniously through them. After all, I am Suvir’s mother because that was very often what he did as well.