Author: snort262

Outside of St. Clement’s Church a bagpipe played Amazing Grace. After the last note died away, the bell tolled 22 times, for each year of Ravi’s life. This was when reality hit Robert and me like a freight train. This was real. We were sitting in our son’s funeral, and this was very real. Our closest friends sat next to us in the front row. Michael sat behind me, whispering in my ear, “All you have to do is breathe.” The opening hymn was one of my childhood favorites, I Sing a Song of the Saints of God. The second verse was changed a tiny bit for Ravi and for those who cared for him.

“They loved their Lord, so dear, so dear, and his love made them strong; and they followed the right, for Jesus’ sake, the whole of their good lives long. And one was a teacher, and one was a nurse, and one spoke of love without using words; he showed it in courage and grace every day, and I mean to do so too.

The Old Testament reading was read by my dear friend Hamp Smith, Isaiah, 65:17-2-, 20-25. Psalm 139: 1-10 was read by my beloved Sister-in-Law, Cindy. The New Testament reading was read by another dear friend, Michael Moore. The sequence hymn was Praise My Soul the King of Heaven. Cindy took the descant which soared to the rafters. Michael followed her with the bass. The Gospel was Matthew, 18: 1-5, 10-14. The sermon was given by Joy Caires, who has graciously allowed me to share her words.

“May the words of my mouth and the meditations of our hearts be ever acceptable in your sights, Lord our strength and our Redeemer. Amen.

Here at St. Clement’s, we often speak of the importance of knowing who we are and to we belong as beloved children of God. I believe that knowing this truth is essential to our faith, for it is a truth that reminds us of God’s love for us, places us in the constellation of all creation, and assures us that the boundaries of our lives are vaster than anything we can imagine. And, as someone privileged to have known Ravi, however briefly, in the here and now, I have the honor of witnessing Ravi’s knowing.

A knowing, grounded in his first glimmers of existence: fearfully and wonderfully made; knit together in his mother’s womb; and baptized into the household of God. Ravi received communion, and in doing so helped make a broken people whole. Ravi was anointed and blessed with oil of gladness. Ravi ambled through the world with joy and wonder. Ravi knew his people and his people knew him.

And, what a gift, for those people. For those of us who experienced the unfiltered delight he evidenced; the open-hearted way which endeared him to so many; and the way in which he entrusted himself tot he loved and understanding of his friends and caregivers.

All of which is to say, that Ravi; without ever needing to use the words of his mouth-showed us the mediations of his heart. And, in this, we are blessed. In this, we are comforted. In this, we can learn what it means to be brave in the face of disease; to find happy in the little things; and what it means to be set free.

To be set free from pain; to be set free from the burden of a body worn out by cancer and its treatment; to be set free of our need to keep him here, for us and with us, always.

Which is why this liturgy is meant to be a joyful one. An Easter liturgy with every Alleluia upon our hearts. A service that send a clear and pointed message that Ravi has been born from this life into the life that it to come.

In the Christian faith we are assured that Ravi’s death is not the end of Ravi’s story and that he is and will always be a part of us. That’s what is meant when our prayers remind us that we do not sing alone. We sign with angels, archangels and all the company of heaven, of which Ravi is now part, of which we will all come to be.

Liberation and devastation. The complicated trugh of this moment AND of our faith.

One of the comforts that Harriet and Robert have described, in the process of living while dying, is the space that they created with Ravi in his final days. A space dedicated to Ravi’s comfort. A space consecrated by the love they shared. A space in which Ravi had the ability to tell his parents that he was sad, that this was hard, and that, even then, he was happy. Happy, and sad, and hard. I can think of no way, more profound, than those words to sum up the joys and sorrows of this life.

Some of you may be wondering how Ravi, who did not use mouth words, communicated his faith. Humans tend to get very invested in the words we speak, and we forget that God’s love and liberative power are not limited by the spoken word. God does not the words of my mouth nor any of our mouths to demonstrate the depth and breadth of God’s love. The raging sea; the still waters; the embrace of a child; the quiet in a garden; peace at the last. It would be a tragedy if we could only rely on the words of our mouths to understand the glory of God.

Which brings me to speak a truth, I do not think that any of you are here because of the words we will speak. I think you are here because you are sad, you know this is hard, and you are so very, very glad that Ravi was happy.

I think you are here because you love Robert and Harriet and want them to see that love conveyed by your presence. I think you are here because you want to be part of the love that endures all things- a love that Ravi so aptly demonstrated in his living and in his dying.

Because of this, I invite you to take a break from the spoken word and listen, oh so carefully, to the words of the heart. Let us observe a moment of silence. Amen.”

With these words, Joy stepped away from pulpit and sat down. Suddenly, a ray of pure sunlight shone through the stained-glass window and illuminated those of us sitting in the front row. Clearly, Ravi was telling us that “all will be well, and all will be well, and all manner of things will be well.” Thank you for reading my blog. Be good humans. Peace, Harriet.

October 11, 2024, 11:49 PM. Surrounded by parents, prayers, pets, a hospice nurse, and ceaseless love, Ravi departed this world into Glory. His body no longer worked, and his soul flew free. His spirit remains in the hearts of all who knew and loved him. He is missed by his parents, his sibling Mercury, and his teachers, friends, and nurses. We give our abundant thanks to all who have supported us in these last 22 months, and especially in the last 12 days.

The Song of Simeon:

Behold now, bless the Lord, all you servants of the Lord, you that stand by night in the house of the Lord

Lift up your hands in the holy place and bless the Lord; the Lord who made heaven and earth, bless you out of Zion.

Glory be the Father, the Son, and the Holy Spirit, as it was in the beginning, is now and will be forever. Amen.

Keep watch, dear Lord, with those who work, or watch, or weep this night, and give your angels charge over those who sleep. Tend the sick, Lord Christ; give rest to the weary, bless the dying, soothe the suffering, pity the afflicted, shield the joyous, and all for your love’s sake. Amen.

At this time, I have no more words. Our beautiful butterfly has flown free. Be good humans, peace, Harriet.

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.

Boo has been out of the hospital for almost 2 weeks, but is still very tired and weak. He is receiving all nutrition through his G J tubes. He has not eaten anything by mouth in weeks. His deep hacking cough is slowly getting better. His labs look okay. He is just very, very weary. The first few days from the hospital Robert and I sat with him around the clock. He had to be attached to his feeding pump 24 hours a day to put weight on him. We were afraid he would pull the tube out, so we sat with him in shifts, including overnight. Sleeping in 3 hour shifts is not good for anyone, but thankfully, we may have put that behind us. Boo is on a feed about 16 to 18 hours a day, but we turn it off at night. He has labs and fluids tomorrow and I hope we will see an improvement in his weights and his lab values. He is getting reassessed by a county RN in early October. We want him to switch to the CAC waiver. This is a county waiver that support chronically ill people in their own home instead of the hospital. Having some extra hands on deck at home would be incredibly helpful.

October 6, 2024, is the Twin Cities Marathon. As I mentioned in a previous blog, I am running this race to raise money for the Osteosarcoma Institute. The dream is to banish this disease forever. Thank you so much to all who have contributed to #TeamRavi. We are deeply grateful. If you did not see his link in the previous blog, I will post it one more time. September is Pediatric Cancer Awareness month. Please donate to our cancer warriors as you are able.

https://osinst.org/herndon-fundraiser/

Thank you for holding us in your thoughts and prayers and good vibes. We are hoping that Ravi turns a corner in the near future and starts asking for trips to Taco Bell. In the meantime, be good humans. Peace, Harriet.

Hello, all. Ravi has been in hospital since last Thursday. He admitted with an eye infection, vomiting and rapid weight loss. As of today, Monday, his eye is looking much better, and he is in a great mood. We still have no idea why he is vomiting up everything from Pedialyte to formula. He cannot swallow anything at all, and nutrition taken in via the g tube comes right back up. Tomorrow is a day for exploration. He will be sedated, and a camera and a scope sent down his throat into his stomach. The team will look for inflammation, stricture, and anything that might need a biopsy. He is starting to get medicine now to block stomach acid and hopefully make him hungrier and allow the food to stay down. He will go on TPN via his port tonight, just to get some much-needed calories into him. For a guy who has spent most of the last week throwing up, he is in an extremely good mood. He is cooperative with the doctors, loves his nurses and wants lots of cuddles with mom and dad. He is using his AAC, Sam, to chat up a storm. We are hoping and praying that tomorrow will bring us some answers and show us a route to bring him home.

I had mentioned earlier that I had a big reveal coming up. Last Friday, Ravi’s web page at the Osteosarcoma Institute went live. Here is his website. You can also get to his website from my Facebook page. If you want to learn more about Osteosarcoma, the website below is the perfect place to find things out.

Donate – In Honor of Ravi Herndon

I am teaming up with OSI to fight for better treatments and outcomes for osteosarcoma patients. I have spent the past few months training for the Twin Cities Marathon on October 6. I am running this race to raise money for OSI and to bring greater awareness to pediatric bone cancer. The treatments for osteosarcoma have not advanced in over 40 years. OSI is trying to change this. My job right now is to care for Ravi and put the final touches on my marathon training. Your job is to hold us in prayer, and if you can, donate to OSI. If nothing else, check out the webpage which is all things, Ravi!

This is a very stressful time for Ravi and those who love him. Thank you to all who reach out and hold us in prayer and white light. I hope I have some more answers to give you tomorrow. In the meantime, be good humans and we will be in touch. Peace, Harriet.

Hello, friends. We are back from Duluth and into the swing of treatment again. Sadly, Ravi’s latest PET scan did not give us the news we wanted. Several more tumors have popped up, and smaller ones that were lurking in the background have grown. The good news is that the mets in his lungs are stable, and the tumors that were treated by radiation responded well. He has begun a daily oral chemotherapy drug called Cabo. He also will be undergoing more radiation to his spine and his left mandible. We are sad about this, because he is still really tired from the last rounds of radiation, but it seems the fastest and most effective way to attack the tumors. He has a swallow study on Tuesday morning, as it has become very hard for him to swallow water or thin liquids, they make him choke and gag. Obviously, this is very scary for all concerned. I give thanks for the G tube because that is how he is getting the bulk of his nutrition and hydration. Wednesday morning, he has a sedated MRI of his left mandible and c spine, and a simulation of how radiation will go. We hope to begin radiation the following week. We welcome and delight in all your prayers, white light, and good energy. They really help.

Friday, I spoke with my editor and by the end of September, my book will be in its final form. Then, begins the search for an agent. Luckily, Abbey, my wonderful editor, will help me with this. I want Ravi to hold this book in his hands as a testament of my love to him.

This week begins the fall schedule for Highland Friendship Club. Ravi is involved in this club and will be in the bowling league and a drumming class. He has tried both of these activities before and really enjoyed them. We are hopeful that this will give him something positive to focus on in the midst of another round of radiation.

September is Childhood Cancer Awareness Month. In a few days I will be releasing a link to a page about Ravi to raise money for better treatments and outcomes for osteosarcoma. On October 6, I will be running the Twin Cities marathon to raise awareness about childhood cancer. This may be the slowest race of my life; I have had no time to do any speedwork. I am getting my mileage in at odd random times throughout the week. But this does not matter. Every mile that I run for Ravi puts us that much closer to a cure for childhood cancer. I am excited to show everyone his blog. Stay tuned!

Thank you for all your support and love. It is deeply appreciated. Be good humans and we will be in touch. Peace, Harriet.

Greetings from the North Shore! Boo has had a splendid week. This was his Nik’s Wish week. Nik was a young man who believed life should be lived with joy. He also believed that young adults with cancer should also get a wish trip. Most Make A Wish organizations only serve children, not young adults. Before he passed from cancer, Nik set up this foundation. His work is carried on by a tireless team of volunteers and philanthropists. This past week, Ravi’s wish came true.

Some young adults want to fly somewhere exotic. Others want to go to Disney Land. Boo’s wishes were much simpler. He wanted to visit a large body of water, he wanted to ride on a boat and a train, and he wanted to stay at a hotel with a pool and a hot tub. He got his wish. We spent 4 lovely days in Duluth. We rode a scenic train up the coastline while eating pizza. We went on a boat ride around the harbor and into Lake Superior, while eating chicken nuggets, bonus! Our hotel was lovely and backed right up to the lake. There were big ships, sailboats, and seagulls galore. The scene outside of our window was constantly changing. There was also a lovely pool and a hot tub. We spent several pleasant evenings floating about in the hot water. I am certain it felt very good to Ravi’s tired body.

His favorite activity by far was the pizza train. The train had a glass ceiling which provided an excellent view of the lake and the woods. There was yummy food to eat and a very festive atmosphere. At the end of the 2.5 hour, it was clear that Boo did not want to leave the train. He wanted to go on more adventures! We will definitely have to find more train rides for him. The boat ride was also a success. It was a bit chilly out on the water and Boo made a beeline for the sheltered snack bar. He happily munched snacks and peered out the windows. The lake was smooth as glass, so no one got seasick. Once again, he was sad to have the ride come to an end. We also went on a surrey ride. This is a 4 wheeled contraption where 2 people can pedal, and steer and the other person can sit in the middle and be rolled around like royalty. We were all crammed together on one seat with Boo in the middle. It was a bit crowded for 3 adults but we made it work. Robert and I provided the leg power, I steered as Robert’s steering wheel did not work, and we spent a good hour wheeling around the lake shore. We had to dodge a lot of other bikers and pedestrians, but a good time was had by all. When we returned the surrey, we found a candy store nearby. We filled a bag with treats and retreated to a nearby bench. Ravi happily devoured gummi bears while I discovered that chocolate covered cherries are the bomb!

The final day of our trip we went to the beach. I had hoped that this would be the grand finale for Boo’s trip, but he had other ideas. He woke up early that day and was in fine form. He ate a good breakfast and was quite interactive. We packed up the car and headed out for the shore. In the car he ran out of energy and fell asleep. By the time we got to the beach he was sound asleep. He was not happy to be roused from his slumbers when we arrived. One way or another, Robert and I propelled him out of the car and hiked the 400 yards to the beach. Boo does not have a lot of stamina and walking through deep sand is hard work. By the time we reached the shoreline he was exhausted. I had plans to get some Christmas card pictures of Boo frolicking on the shore, but all I got were 3 pictures of Boo burying his head in Robert’s tummy and trying to go back to sleep! Robert skipped rocks and I admired the shore. After a few brief but soul satisfying moments, we headed back to the car. Ravi slept all the back to the Twin Cities. All in all, it was a great respite, and I am eternally grateful for the wonderful folks at Nik’s Wish for making Ravi’s wishes come true. Thank you all for coming along for the ride. Be good humans. Peace, Harriet.

Boo, my love, the past weeks have been really hard. You came through your ten days of radiation treatments like a champ. You greeted the staff at 5:30 every morning with a smile. You won the heart of the receptionist who asked if she, too, could call you Boo. She knew it was your special name, and she wanted you to feel right at home. I gave her permission, gladly. We can always use more cheerleaders for Team Boo.

I had hoped when radiation ended you would bounce back. But your body is still healing. Your smile is beautiful, but your body is battle tired. You eat and drink very little. I thank God every day for the G tube that lets your daddy and me get fluids, calories, and medicines into you. I can tell by your face that this probably does not feel too good, but, baby, we have to keep you alive. I know you are not comfortable, but you can’t tell me where you have pain. It hurts my mama heart to see you in such discomfort. I was always taught to love, rather than to hate; but baby, I hate this cancer. It is an evil force that I wish I could rid you of. I want to banish it forever. Your doctors want to banish is forever. They are working their hardest to bring you to health. Stay with us, baby. Stay with us a little bit longer. There are still good things to be had.

In early August we are going to Duluth. You love large bodies of water, and you can dip your toes in those baptismal waters of the North. You can go for rides on trains and boats. If you want to spend all day in the jacuzzi, that is fine, too. This trip is just for you. You earned it and it was given to you anonymously, but with great love, from someone else who wants you to be happy. I want this to be a time or respite and renewal.

Through this whole journey, your Auntie Pidge has been our guiding light. She is a Healing Touch practitioner. She prays for you daily and sends you healing energy. When you were in the hospital, we were blessed to have Healing Touch nurses come to your bedside and work with you. You responded so well to their ministrations. I believe that they helped you get through all those rounds of chemo. Yesterday, Pidge suggested to me that we seek out an HT practitioner in St. Paul. She will continue to send you her love and prayers but feels you would do better with someone who can actually lay hands on you. Two years ago, I would have laughed at such an idea. Now, I am a believer. I watched those HT nurses take your pain away. They brought back your smile. They also showed me how to help you. I will help you the best that I can, as I always do. But, right now, I want someone else to lead and guide me to help you to feel the best that you can in your body. I have reached out of an HT healer in St. Paul. I hope to hear from her soon.

Boo Bear, I love you more than life itself. I would do anything to take away your pain. Stay with us a little bit longer. Let’s go to Duluth. Let’s do some music therapy. Let’s try HT. Boo, you have the most beautiful smile. Your wonder and amazement about the world around never grow old. From your biggest fan, Love, Mom.