August 7, 2018
These have been an exciting couple of weeks in the Jhaveri's world. Monday, July 30, 2018 was a day we celebrated only because of ALS. We created joy in spite of a devastating situation. On this day, with very short notice, a crowd of about 80 friends gathered at a local wedding venue to watch all three of my girls wear wedding gowns and be escorted down the aisle by their dad, Akhil, who is within weeks of death if not days. This creative celebration was the idea of my friend, Deanna Green, when I shared with her that Akhil said he is hanging on for the girls’ weddings after suffering with ALS for seven years. Thinking it may give Akhil the freedom to let go of all the suffering of this world, Deanna said, “Let’s give him a wedding!” Within ten days, we had a wedding put together complete with an amazing venue, photographer, DJ and flowers.
The girls were not terribly excited at first thinking it would be weird to have a wedding with no groom. Honestly, I did too since we had no idea what we would do for the ceremony. As the days went by and we formulated a plan, we all began to see how special and amazing the celebration would be. We were not only giving Akhil the gift of seeing his daughters walk down the aisle, but we were also giving ourselves memories for a lifetime. I am so glad Deanna had the courage to call me to tell me her crazy idea of a wedding with no grooms! It was a day we celebrated - a day that never would have occurred if it weren’t for ALS.
You can watch the ceremony here: WATCH
This wedding preceded my niece’s actual wedding in Indiana which we were to leave for three days later. The girls and I said goodbye to Akhil on Thursday, August 2 expecting that he might be gone when we returned. Our youngest daughter, Jordan, said, “See you when we get back!” to which Akhil closed his eyes to mean “no”. Jordan tried again, “See you on Wednesday!” Again, Akhil responded with closed eyes to indicate “no”. Jordan’s eyes welled up with tears at the thought of her dad’s death as she left the room to go to the car.
We left with a hint of sadness thinking Akhil might be gone by the time we returned. We are headed back home today. In spite of his predictions, Akhil is still there waiting for us. We have mixed emotions about that. We were expecting to return to something unfamiliar: an empty hospital bed in our home. We thought we would be celebrating the end of Akhil’s suffering and be free of all the restrictions ALS has put on us. Instead, we are returning to the familiar and a state of being we have come to know as normal.
ALS had reinforced the idea that we cannot predict the future, nor should we live for it. We must live in the moment enjoying and celebrating where we are today no matter how weird it may seem. Today we are returning to what we know, a life with ALS, and as long as we remain here, we will continue to find joy right where we are. I hope no matter where you find yourself in life, you can always find joy and reasons to celebrate.