What Ravi Has To Say

Hello, friends. I have been on a media blackout for the past week. Only now am I poking my head into the cyberworld. Last Wednesday we took Ravi into the clinic for emergency fluids and labs. His weight was continuing to plummet, and he was sleeping multiple hours a day. Two of our favorite nurses came in to talk to us. They recommended several options for Ravi, one of which included hospice care. A lot of tears were shed, both by Robert and me, and the nursing staff. Ravi perked up a bit with the fluids and we went home. I lay on his bed with him, just talking and hanging out. Five hours went by in the blink of an eye. I told him how strong and brave he was. I told him how much I loved him. He held my hand and smiled, totally relaxed. For a moment, a look of concern crossed his face. He looked worried. I said to him, “That’s it, no more hospitals. We are done.” A look of extreme peace crossed his face, and I knew I had made the right decision. The next morning, I called our team and asked to begin at home hospice care. Hospice intake happened that afternoon. Ravi will remain at home with comfort care only. He is very at peace with this. We have lovely nurses and aides who visit multiple times a week. He has a wheelchair. Anything we can think that he might want, be it extra supplies, formula, meds, etc. is delivered within the day.

For obvious reasons, I did not run the Twin Cities Marathon. It seemed selfish of me to be away from Ravi for up to 8 hours. Thank you all who contributed to our fundraiser in October. We raised over $3,000 for osteosarcoma research. I owe you a marathon, but that will happen at another time.

This is a very strange time. Ravi has his days and night mixed up. He is often most lucid and alert in the evenings and early morning hours. One of us must always be with him. He does not realize that he lacks the strength to get out of bed and walk off. He can make it a few steps and then he collapses. He is very thin. We can only feed him tiny bits of formula at a time through his G tube, or he throws up. For a week or so, he was unable to take in any food at all, leading to the catastrophic weight loss. At this point, he is tolerating formula, Gatorade and free water. I am so thankful for his G J tube. All meds and anything else that he needs goes through the tube. We are surrounded by love, friends, and prayer. Friends and clergy have stopped by to walk dogs, fill our refrigerator, pray with us, or just offer simple companionship. This is all greatly appreciated.

I want to assure that you Ravi is not in any pain or discomfort. He does not appear to be afraid. He is surrounded by love and comfort. The hard part is for the caretakers who are slowly saying a long goodbye. I spend my days memorizing him, how his hair smells, how his hand feels in mine, the way that our feet are identical, how he smiles. I want to carry this in my heart forever. He is happy to snuggle with me or his daddy. He is happy to know that one of us is always there if he wakes up. The last thing I want is for him to wake up and be alone.

I believe in thin spaces. This is the space that happens around birth and death. There is a veil that separates this world from a world that we can only dream about. Sometimes, this veil flutters and we get a glimpse of the beyond. Ravi is in this thin space. He is not quite in this world, nor is he yet in another world. We will hold him in this space for as long as he cares to stay. When he is ready to go, we will kiss him and set him free. I do not say this casually. This is the most heartbreaking thing Robert and I have ever faced. My worry when Ravi was younger was that he would outlive me, so I decided I would just have to live forever. This is not going to be the case. Ravi will pass before Robert or I pass. He will be in a new reality where there is no pain, no fear, no cancer, no epilepsy. His body will be new again.

Thank you to all who hold us in your thoughts and prayers. To those who walk our dogs or fill or fridge, or just sit with us. You are good humans, and I am proud to call you my friends. Peace, Harriet.