Hospice Survey…Really?

Sometimes, things that land in your mailbox are good, like a note from a dear friend. Sometimes, things that land in your mailbox are not good, like an overdue bill. Sometimes, things that land in your mailbox are just plain weird. Last week, I got a survey to fill out about the hospice care team that took care of Ravi in his final days. I did not fill the survey out for several days and was sorely tempted to crumple it up and throw it away. I finally decided to fill it out, as maybe it could help someone else.

Filling out the form was heartbreaking, as it took me through Ravi’s final week on this planet. I gave high praise to the nurses and aides who cared for him. I mentioned them by name and gave them exemplary marks for going above and beyond what they needed to do. The questions at the end of the form had me scratching my head. They wanted to know if I would use their services in the future. The options were: yes, no, or maybe. What I really wanted to tell them was that I sincerely hope I never have to use hospice services for a loved one again. The other question was: Would I recommend their services to friends or family? I had a sudden vision of my review showing up on Yelp, or some a social media page. Part of me was laughing, in a gallows humor sort of way, part of me was simply shocked. No! I am not going to recommend this hospice service to anyone that I know and love. I never want anyone to be in the kind of position where they are planning the last week of their child’s life. I never want a parent to go through the heartbreak that Robert and I have been through. Fortunately, there was a space at the bottom of the survey to make additional comments. I gave high praise to the nurse that walked us through that final, horrible night. I told the hospice agency that I was not going to recommend their services to anyone else as I am highly superstitious and do not want to pass on bad luck.

As I said before, many things pass through your mailbox. Some are good, some are bad, and some are just plain weird. I hope that somewhere in the universe Ravi is running free, cured and whole. I hope I do not get any more weird mail for a while. I hope that none of my readers get any mail of this sort.

I am going to pivot here. For years, this was a blog about autism and Ravi. Thank you to my dear followers who kept up with us for so long. Though I deeply miss and grieve Ravi, I do not want him to see what our country is on the cusp of becoming. I fear for our marginalized groups, the poor, those with differing abilities, those who are LGBTQ, those whose skin color may be different from my own. I will still talk about autism, and at times, osteosarcoma, as these are very important issues to me and to my family. But, as I pivot, I want to be a voice of hope, I want to be a voice of change, above all, I want to be a voice of kindness, especially to folks to whom kindness is rarely extended. Ravi is no longer with us, but his legacy will live on. I always fought for my offspring and for issues that I hold dear. I hope, my readers, that you will continue with me on this journey. Be a good human, do it for Ravi. Peace, Harriet.

Raya

Hi there, my name is Raya, and I am a blue merle Australian Shepherd. For a long time, nearly 4 years, I lived in a crate. My job was to produce beautiful puppies. By the time I was three and half, I had had multiple litters. No one was mean to me, they said I was a good little mama, but no one really loved me. One day, a rich lady bought me from my breeder and put me in a foster home. I spent a lot of time in a crate, and I did not like this. I barked a lot. This lady said she did not like barky dogs, so I went to live with a nice man named Phil. He said he would help me find my forever home. I was not sure what this was, but it sounded good.

Yesterday, Phil put me in the truck, and we went for a long drive. We got to a new place and met some new people. They said they were my new mommy and daddy if I wanted. I was not sure about the mommy person at first, but I warmed right up to daddy. He has the softest hands and a deep rumbly voice. After a while, I let him pet me and water came out of his eyes. Humans are strange, sometimes. The mommy person said, “Robert Herndon, your dog just found you.” More water came out of is eyes, and he honked his nose (is he a goose?) but he was smiling,too.

We got into another car and drove to a house. There are two little dogs there. One of them wants to be my friend. Mommy says his name is Jack Jack. The other dog is Gloria. She barks a lot. I mostly ignore her, which frustrates her. There is also a kitty named Nikki. We rub noses and he purrs. Mommy says there is hedgehog, too, but I don’t know what a hedgehog is. Is it a tiny Aussie with prickles?

Last night, I lay on the softest bed and went to sleep. I woke up a few times, and guess what? Mommy and daddy were still there. I woke up early, but mommy says that is okay. Her muse often gets her up early. I had a treat and now mommy is making clickety clackety noises on something called a computer. What is a computer?

There are only two humans at this house. There was a boy, named Boo, but now he is dancing with Jesus. I hope he is happy. There is also another person. Mommy says they are away at college, but she hopes and prays that someday they will come home. Mommy and daddy miss them.

Mommy is about to take me for a walk. I am still learning to walk on a leash. I have so much to learn, but mommy and daddy say this is okay. I can take my time. I will check back in later, there might be treats. Be good humans and pet all the Aussies. Peace, Raya.

Two Months

Dear Ravi,

It has been two months since you left us, but you are never far from our hearts. You will be happy to know that I am now teaching at Bridge View School, where you spent so many happy years. I am in a classroom with 1 head teacher, 3 staff, including me, and 4 very busy 8- and 9-year-old boys. These 4 boys really keep us hopping. Today is bitterly cold out so we did not go outside for recess. We did get to go swimming and to the Explore and Learn room. You loved both of those places and the teachers there remember you fondly. I saw your bike today. It is put away for the moment to make room in the gym for the winter presentation. Soon, it will be back out in the gym and providing joy to others.

Today was a day of laughter and tears. I miss you desperately, but I love the work that I am doing. I have wanted to work here for many years. God knew what He was doing when he told me to step away from the special ed world 8 years ago. There was no way I could have been a good mom to you and Mercury as well as the best teacher I could be. God needed me to focus all of my attentions on you and your sibling. Mercury is now in college, and you are in heaven. God called me to work at Bridge View and I am following His will, with as much grace as possible. It has been my dream to work in a classroom of autistic students. It is very hard work at times, but it also provides me with joy. There are just certain moments when I think of you and the pain of your loss takes my breath away.

Though I was introduced to the staff as Teacher Harriet, everyone calls me Ravi’s mom. I wear this title with pride. My son, you are not forgotten. You live on in the memories of those who taught you and loved you. We are not really celebrating Christmas this year. The last 2 years were clouded by chemo and cancer and were not times that we wanted to celebrate. This year we are going for Dim Sum with Dan and Robin and then playing board games. I have 2 weeks of vacation and during that time I am working on my pitch to various publishing companies. It is my goal, one of many, to have you live on through my words. I love you to the moon and back. Mom, aka, Ravi’s Mom.

I Sing a Song of the Saints of God

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.

Fly Free, Boo Bear

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.

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.

Upcoming Boo News

Hello, friends, we gamely shuffle forward. Boo is still very sick and weak. We spend most of our waking, and many of your sleeping, hours coaxing fluids and formula into his GJ tube. I am now starting to see a pattern. He is most able to digest fluids and formula early in the day. As the day goes along, he develops a deep hacking cough, trying to get rid of the mucus in his throat. In the evening, he often vomits. A lot of the time the emesis is just stomach bile, but it makes him feel terrible. We are now giving him anti emetics every 8 hours and are hoping this will do the trick. He was seen at clinic on Friday and will be seen again tomorrow, on Monday. Though he is still very fragile, his team has decided to go forward with 6 more doses of radiation, beginning on October 3, ending on October 16. We would like to wait until he is stronger, but we are running a race against time. The tumors in his mandible and his C spine are still growing. The hope is that the radiation will give him some pain relief and also make it possible for him to eat by mouth again. It has been weeks since he has eaten anything orally, and this has greatly contributed to his depression. Thanks to Alissa, I am now in contact with a doctor at Mayo who does cryoablation. He thinks that Ravi might be a candidate to receive cryoablation to his jaw and that would provide considerable pain relief. Hopefully, this would let us cut back on the use of opioids.

Today, the plan is to get Ravi hydrated and fed and out of the house. We want to take him to Target, his happy place. We will put him in a Caroline Cart and push him around the store to his heart’s content. He needs to be out and about. Right now, he travels between his bed at home and the infusion chair on floor 9. We need to expand his horizons.

In the middle of all of this I discovered that I need not one, but two root canals. I have a crown that keeps falling out and another one that fell apart during Boo’s last hospitalization. If that that was not enough fun, I also nicked my right knee and developed MRSA. At first, I thought it was just a spider bite. Then I became unable to put any weight on the knee if I were kneeling. I went for an 8 mile run on Wednesday and it was miserable. I was slow, the knee was stiff, and nothing felt right. I could not get into my regular clinic for a week, so I did a virtual doctor visit. She looked at my knee and said it was cellulitis. She gave me antibiotics to take every 6 hours and said to try warm compresses. After three days it was clear the drugs were having no effect. My knee was red, swollen, full of pus and I felt terrible. I did another virtual doctor visit. This doctor took one look at my knee and said it most almost certainly a MRSA infection. She asked if I worked in childcare or in a hospital. I said no, but that I spent a lot of time in hospitals around children. She prescribed doxycycline and anti-inflammatory drugs. I took the first dose last night before I went to bed. This morning the swelling and redness has gone down and my knee is less stiff. I also feel much more energetic. She had said if things had not improved, I would need to go to an Urgent Care, but I no longer think that this is necessary. I will try a gentle run this afternoon, just to test out the knee and my new running shoes. My marathon to raise money for the Osteosarcoma Institute is in exactly one week. This will probably be my slowest marathon ever, and I don’t care. I just want to run this race. Due to Covid and a spinal fusion, I have not run a marathon since 2018. It is time! Though I ran all summer, I did not get in as many long runs as I would have hoped. Two weeks ago, I ran 20 miles, my longest run in 6 years. It was slow but felt pretty good. The plan for this week is to rest, eat well, foam roll, try to sleep, and get mentally ready for the marathon.

Thank you so much to everyone who contributed to #TeamRavi. Robert and I are overwhelmed by your generosity. My contact person at the Osteosarcoma Institute tells me that they have surpassed their original goal for donations in September. For the last days of September, and today is the last day, donations will be tripled. In case you have not seen the website, I am including it once again. https://osinst.org/herndon-fundraiser

Please go look at the site for no other reason than to see our favorite Boo Bear. Many of the pictures are from his Wish Trip to Duluth. We had such a wonderful 4 days away from cancer and treatments. At that point, he was strong, healthy, and eating with gusto. I hope and pray that he can feel like that once again.

Thank you all for holding us in your prayers. They mean more than we can express. Be good humans and we will be in touch. Peace, Harriet.

Update on Boo

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.

Greetings from room 5129

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.