Bittersweet

Last month, Masonic Children’s Hospital held a Pediatric Day of Remembrance. We did not attend this event because I can’t even imagine myself setting foot back in that hospital. Every0ne there did a spectacular job of caring for Ravi. Many of his care providers even attended his funeral. But I don’t think I can ever set foot back in that building. Too many memories and too much loss. Anyway, we submitted a picture of Ravi and short story to be on display with the other photos of children whom medicine has failed and died too soon. Today, we received a small package in the mail. It contained a wooden circle with Ravi’s name written on it. Attached were some ribbons, some beads, and a small bell. It was clear to us that someone had spent time on this project. I am looking for the perfect place to hang this little totem of Ravi. I haven’t found it yet.

It is funny how sometimes just opening the daily mail can be a gut-wrenching experience. We had been having a fairly normal day, up to that point. I had gone on a walk with friends, attended a job training orientation, and had taken another walk with Robert. Now, I feel like my heart has been ripped loose and thrown on the floor. That little totem we received is so bittersweet. It reminds us of Ravi and how many people that his life touched. It reminds us of all that we have lost. I am glad to see the end of July. This month is both Sarcoma awareness month and Bereaved Parents month. I have been limiting my time on social media because it feels like I am being pulled into quicksand. I will go to my grave being both an Autism and Osteosarcoma advocate. Osteosarcoma is a rare disease and gets very little in the way of funding. The treatments used to combat it are at least 40 years old and barbaric. Furthermore, cancer treatments are designed for the adult body, not the pediatric body, and these toxic treatments cause either the cancer to come back later, or major health issues as these children mature. The 5-year statistics are grim, to say the least. We need cures, we need better outcomes, and we need them now. Medicine could not save Ravi, but maybe research and better funding can help the next generation of children. I am a pacifist and refused to say that Ravi was battling cancer. This leads one to the obvious conclusion that there is a winner and a loser to this battle. Ravi did not lose his battle to cancer, medicine failed him. Full stop.

So, this brings me back to the bittersweet totem that we received in the mail. I am glad that Ravi was loved and is remembered, but I am still heartbroken. I don’t think that the grief from child loss ever goes away. Some days are better than others. This is a very bittersweet kind of day. Thank you to all of you who were a part of #TeamRavi. Your love and support will never be taken for granted or forgotten. We are all part of the same team. Be good humans and I will be in touch. Mama Harriet.