Look who checked in!

For months I have waited and longed for Ravi to come to me in a dream. I have had very vivid dreams where he is missing, and I am desperately trying to find him. I have brief moments of grace, early in the morning, before I open my eyes, when I think that he and his sibling are still under my roof. But, until early this morning, Ravi has never shown up in a dream.

The setting of this dream was a little pub in County Kerry, Ireland. I was there with Robert, Peter, and his girlfriend, Amber. Ravi was a bar keeper, passing out brimming pints of Guinness. For some reason, there were other young children and babies at this pub. Robert and I were giving them many toddler and baby toys that Ravi had outgrown. The mood was very upbeat and happy. Ravi was wearing his favorite Irish hat that Peter had brought him many years ago and was his favorite accessory. In the interim since we had last seen him, he had grown a magnificent moustache, of which he was very proud. I woke up smiling.

A bit later I checked my phone for messages. Two friends in two very different locations had sent me pictures of a red male cardinal to show me that Ravi was showing up in their backyards to say hi. As I sat in my favorite reading chair, drinking coffee, I had the very strong feeling that Ravi was right in the next room, just out of the corner of my eye. A few hours later Alissa and Alan came over to visit and hang out. Alissa told me when she had stopped by the other night, Ravi was definitely in the back of her car, eager to go for a ride, or any good adventure. Towards the end of the visit with Alissa and Alan, I gave her Ravi’s yellow Nik’s Wish hat. Alissa had never seen him in that hat, as he got it after she had moved to Hawaii. I told her that Ravi wanted to go with her and see the ocean and play on the beach. Tears welled up in her eyes and she took the hat eagerly and tenderly.

These are just a few of the signs my friends and I have gotten today that Ravi is well and on the move. You might see him as a male cardinal, a beautiful monarch butterfly, or a bar tender. When you see him, raise a pint or a hand, tell him hello, and that mama bear is very proud of him. In the meantime, be a good human. Peace, Harriet.

When Boo Bear came back as a butterfly

Last weekend was magical. When Ravi was 4 and Mercury was 2 we had the most amazing person who lived with us for a year. Her name was Shirley and she had immigrated from China to get her Masters and PhD at the University of Minnesota. Her focus was autism and she wanted to live with an American family with an autistic child. She lived with us from 2006-2007 and was a huge part of Ravi’s life. A few weeks ago she found a $100 round trip ticket from Atlanta, near where she currently lives, to Minnesota. We both decided this was a sign that she needed to visit and she booked the ticket immediately.

Shirley was in town only 26 hours, but we made the most of them. We laughed, talked, cried, and shared our favorite memories of Boo. She was the first person I allowed in his bedroom, and I welcomed her to take anything of his that spoke to her. Early Sunday morning she was sitting in my reading chair, meditating and praying. Two things happened at once. She looked at the window, into a cold Minnesota morning and saw a big, beautiful butterfly. Her gaze then turned to a picture of Ravi on the refrigerator. She said that she heard his voice in her mind saying, “Shirley, I am happy”. A few hours later we went to church and were amused to find that we were both wearing Boo Bear socks. After the service we went down to the chapel to visit Ravi. We cried, we held each other, we mourned. It was very hard, but very cathartic. After, we picked up donuts and coffee and returned home to Robert.

Too soon, the visit had to end. We drove her to the airport and and , among tears and laughter, put her on her plane, heading home. As we were driving home, two things happened at once. I got a text from Peter saying that Ravi had been in his dream, and it was great to see him. Just then, a truck with the license plate “Boo” pulled in front of us. This had to be more than mere coincidence. An hour later I got an excited text from Alissa. She had been coaching her Special Olympic swim team in Hawaii. The entire time, a dragon fly was hovering over the pool. A dragon fly is a sign that the soul of her brother Jonathan is nearby. When she returned home, a beautiful orange monarch butterfly was waiting for her. She did not get a picture, but immediately alerted me.

All of the signs happened within a 5-hour period. I do not believe in coincidence, but I do believe in God, and I do believe in a life beyond the grave. Ravi appeared to two people as a butterfly, to Peter in his dream, and to Robert and me as a license plate. There is no doubt in my mind that my boy is footloose and fancy free in the world. He got to visit all of his favorite people in one day. We all could truly sense his presence

One final note. Ravi’s name has multiple meanings. In Russian, Ravi means Bear. In Sanskrit, it means sun. In French, is means to bring delight. Ravi is all of these things and more. Though we grieve him and miss him dearly, I know that he has shed his mortal, cancer ridden body and is flying free, immune to to the bonds of time and space. I am happy to share him with the world. I have submitted my final touches of my Not Your Ordinary Autism Book to my editor and showcased in a way, I hope, that I hope will draw in a publisher. I will keep you posted. In the interim, be good people and be on the lookout for signs and miracles. Peace, Harriet, Ravi’s mom.

Dear Jesus,

About 5 months ago, my son Ravi arrived in heaven. He came rather suddenly on a Friday night. His family was not prepared for his departure, but he had outlasted his earthly body and was ready to leave it behind. If you are not certain how to recognize him, let me help. Ravi is about 6 feet tall, 2 inches. He has thick brown hair, with a bit of “chemo curl” and the most beautiful blue eyes. He was not wearing glasses when he left, but I doubt that he will need them in heaven. He has worn thick glasses since the age of 2 and a half. His tummy was not working very well when he left, even with the G/J tube, he could not take in any nutrients. This was very distressing to all of us. Now that he is in heaven, let me tell you what he loves to eat. His favorite drive through food is Taco Bell. Usually, he likes a large cherry freezie and a chicken quesadilla. If that does not work, a soft-shelled taco with beef and cheese can fix almost any problem. If he is in the mood for a sit-down meal, there are many options. He likes fried chicken and sweet tea from Canes. Carbonne’s has great pizza and cheesy bread with marinara sauce. Noodles from Noodles and Company is also a big hit. A turkey sub, from Subway with a side of chips and a drink is also a good choice. Though Ravi was always very skinny, he really does like to eat, and dining out with Alissa or Peter was one of his favorite things. For on the go snacks, gummi bears, Twizzlers, and goldfish crackers are always good.

On earth, Ravi had to take a lot of medicines, even before the cancer. After he was diagnosed, the medicines more than tripled. His daddy kept them all in a big med minder and made sure it was always filled and up to date. He had lots of timers set so he knew that Ravi was getting the right medicine at the right time. We know that there are not seizures or cancer in heaven, so guess you don’t need to worry about that.

Ravi has an AAC named Sam. It goes everywhere with him since he does not use mouth words. Can he use mouth words now? Sam is still here with me, on Ravi’s dresser. I miss Sam and I really miss his owner. I would love to hear Ravi’s voice. I can still hear his laugh. He has the best laugh. Sometimes, it is a high-pitched cackle, other times, it is a low, rumbling belly laugh. He has a very good sense of the absurd, and sometimes things just catch his fancy and he just giggles. I would love to know what goes on in his head.

Ravi loves to go for rides in my Subaru, Forester. His favorite stations are Cities 97, The Current, and the Classical Station. He can choose his own stations and has very definite ideas about what constitutes good music. I have entire playlists on Spotify that we set up when he was in the hospital. I have not listened to them in nearly 5 months. Sometimes, a favorite song will come on the radio and the memories it evokes almost takes me to my knees. Music is such a powerful trigger, and it can evoke both beauty and pain.

When Ravi arrived, was Rosie there to meet him? She was his best buddy for 12 years. Things were always okay in Ravi’s world when Rosie was around. Though she is an amazing service dog, she will try to eat his treats. He likes to share his treats, so it is probably okay. They have a pretty good system worked out.

Jesus, please let Ravi know that we love and miss him deeply. Things are not the same without him. I am still trying to publish his book, so more people will know his story. I am still pushing for better funding and outcomes for osteosarcoma. I did not go to church yesterday, as the memories were too strong. I did take long dog walks. The snow is melting, and the weather is getting warmer. Ravi loves to go for walks and when he is healthy, which he is now, he can go for miles. Sometimes, these walks end us up at Subway, for a sandwich, or Super America for a drink and a treat. Sometimes, they wander us across campus to look at the college kids on the quad, sometimes, we like to go to Belmont Park. Spring is coming here, and I have two baby trees that I plan to plant in the backyard in Ravi’s memory. April has also given me lots of bulbs to plant. I want to make our backyard a sanctuary for the bees and the birds.

Jesus, you know better how to care for Ravi than I ever did, but this is just a list of suggestions for his care and feeding. Tell him how much we love him and that someday, we will all be together again. In the meantime, I will continue to advocate for him. For everyone out there in this crazy world, keep the faith, be good humans, and I will be in touch. Harriet.

Our Sunday Visit

Hello, Ravi my love. It is early on a Monday morning here and it is 43 degrees F. This is amazing. 8 days ago, at this time it felt like minus 35 degrees F and schools were closed due to the extreme cold. Yesterday, I walked the dogs and did not even need mittens or a hat! It was amazing. The dogs are spending a lot more time outside and the cat moves from place to place in the house, following sunbeams.

Yesterday, I attended the 8:15 am church service, my favorite. Elizabeth preached and did a lovely job in her sermon of weaving together the readings of the day into a message of social justice. We don’t just go to church to hear good things. We are charged with taking this message of Good News out into the greater world. When April baptized you, nearly 22 years ago, those in attendance made 5 vows for you. These are the vows: To live among God’s faithful people. To hear the Word of God and share in the Lord’s supper. To proclaim the good news of God in Christ through word and deed. To serve all people, following the example of Jesus. To strive for justice and peace on the earth. These are very specific promises we made, Ravi, and I try my best to keep them, even those the world around us is a tumultuous place. We must respect the life and dignity and every human person, in a world where so many rights are being taken away from the vulnerable. The people of God are all around us Ravi, and we are called to serve and love our neighbor as ourselves.

After the service, and getting another big hug from Elizabeth, I went down to the chapel to visit you. Every time I see your name on your niche and run my hands across the wooden door that separates you from me, the tears come thick and fast. Ravi, my son, I miss you so much. The chapel is a good place to cry, to pray, to reflect. I spent a good deal of time praying and talking to you. I told you how confusing and scary the world is right now. I reminded you that in scary times we must do what Mr. Rogers said to do, to look for the helpers. I told you about my job at Bridgeview, and how sometimes it is very difficult. I like my job, but it is taxing me physically, mentally, emotionally, and spiritually. For these reasons, I have taken FMLA and am stepping back for a few weeks, to get my bearings. I jumped into this job not two months after we had lost you. I was and am, still very raw and brittle. I need some time to pray, to breathe, to revive. While I was chatting with you, a mama and her daughter came in. They placed a most beautiful bouquet of yellow roses near your niche. Then, they went over the niche of their loved one and prayed for a while. The left as quietly as they came. The chapel is a good place to be.

In time, I returned upstairs to the Adult Forum. The topic that day was on the sacrament of Ordination. It was led by Anne, an older priest who had retired 4 years ago, our 2 female priests, whom you know, our female deacon, and a male priest I did not know. Anne talked about the still recent struggle for women to become ordained and then be placed in a parish. When she mentioned the Right Rev. Budde, the room broke into spontaneous applause. As I have mentioned before, she is a woman of God, preaching a message of justice and mercy to a world that does not want to hear it. In many ways, she reminds me of Arch Bishop Oscar Romero. I hope and pray that she does not meet the same fate. The lecture ended far too soon, and I exited into brilliant sunshine bouncing off the snow. It was a morning well spent. I have much to think about as I try to uphold the vows prayed for me at my baptism in 1971. I want justice and mercy. I try to respect the dignity of every human being. Rather than just flailing about in a world engulfed in chaos, I need to find my own way to hold up a tiny bit of the sky. I want to provide people with love and safe places to be their own authentic selves. Your story has not ended Ravi, and I am still living out the vows that I said for you, over 2 decades ago. The traditional dismissal from the Episcopal Church is with the priest telling the congregants to go forth in peace, to love and serve the world. Friends, we live in troubling times. Rather than just thrashing about in the chaos that never seems to end, in what way can you hold up your tiny portion of the sky? In what way can you create a safe place? I assume that we will all have different ways to carry these things out. None of them are any less than the other. Be good humans. Walk in love as Christ loved us. Peace, Harriet.

This and That

Good morning, Ravi! I went to the 8:15 church service this morning. You will be happy to know that Joy preached, and I was sitting in the back of the church surrounded by autistic kids, young adults, and supportive parents. There were lots of fidgets and stim toys. The young adult across from read the prayers of the people and did a lovely job. I think you would really like her. After the service, I chatted with the parents in front of me and their two sons. They had been at the Sensory Friendly Christmas Eve service, and I was happy to welcome them back. Joy joined us and we all geeked out for a very happy ten minutes. Following this, as you know, I visited with you in the chapel. As soon as I saw your niche in the columbarium, the tears came thick and fast. Ravi, my love, I miss you so deeply. I hope your soul is at peace and roams free and strong.

During her sermon Joy quoted Oscar Romero, my hero and favorite saint. He was martyred while speaking truth to power. He fought for the poor, the exiled, and those who have no voice. On another note, Leonard Peltier is returning to his tribal home and those who love him this coming Tuesday, February 18, 2025. He has wrongly been imprisoned for nearly 50 years for a crime he did not commit. For nearly 3 decades, I have prayed, petitioned, and written to our representatives in Congress for his release. Tuesday is his homecoming and I and many others rejoice.

Ravi, these are scary times, but we must keep showing up. On February 28, it is buy nothing day. The idea is not to spend a penny on oil, gas, Amazon, or big business. If one must buy essentials, one is encouraged to make their purchases from small businesses. From March 14th to 17th, I will join others in boycotting Amazon. I have already divested from them months ago, but now I am encouraging others to do the same. It is time to support brick and mortar small businesses. It is time to show the oligarchy that our voices will not be silenced. There may be people who will tell me to stay in my own lane and only talk about autism advocacy. This is not the time to stay small and silent. This is the time to speak up, even if our voices tremble. The IEP and 504 that supported you and your sibling are at risk. Our human rights are at risk. The cancer research and trials that are lifesaving are in grave danger. I cannot remain silent.

Ravi, if I could wave a magic wand, I would bring you back, whole and healthy. I would establish a true democracy, a land where you and all other citizens could flourish. Alas, I lost my magic wand in Diagon Alley. But, I will continue to fight. On President’s Day, there are rallies at all 50 capitals of this nation. If you cannot make it to your capital, call your senators and congress people. Call the White House switchboard. It is open 24 hours a day. Tell them to fire Musk and bring back jobs and benefits which were unfairly taken. Speak up, stand up, and be a good humans. Peace, Harriet.

Four Months

Ravi, my love, it has been 4 months since we lost you. The hurt and pain is magnified and grows by the day. While I was praying for you, all those 22 months, I was also praying for another little girl, whom I will refer to as Warrior A. She was diagnosed about the same time as you were. I followed her story, and the story of her sweet family. Like you, she had her wish granted and then began to decline shortly after. She entered hospice several weeks ago, and yesterday, held in her mama’s arms, she breathed her last. Like you, she is now dancing with Jesus. Ravi, you were such a good big brother. Please look out for Warrior A and make her feel at home. I will continue to pray for her family, who has just entered a new hellscape, a club that no family wants to belong to.

I don’t know how to explain to you the events of the past few weeks. Democracy is dying. The programs that allowed you to attend school, have an IEP, ride a bus with special accommodations, are all threatened. The faculty room at Bridge View is a grim place, where all the teachers and paras wonder if we will have a job in the coming months. As we always do, Bridge View has jumped into Black History Month with both feet. Everything in our school screams Black History and Black Power. It is crucial for children to feel represented by whom they are taught, by the books and pictures that they consume. It is also vital that these children feel safe and loved and that they belong. All of these things are threatened. Almost all of our school relies heavily on free breakfast, lunch, and snacks. Outside of school, our families rely on WIC and SNAP. These are the things that keep our families fed. All of these things are in danger, due to rich men who lack a moral compass. These men do not care about cancer research, cancer trials, or Medicare. These men do not care about the environment or our national parks. In short, Ravi, they are sheer evil. Somehow, some way, we must find a way to fight back. Your father and I are still trying to find ways to do exactly that.

Ravi, we miss you desperately. But, in a very sad way, I am glad you are protected from this horror. You were so proud to cast your vote for Biden when you were 18. There was dancing in the streets in our neighborhood when he was elected. I don’t know how to explain to you what is happening. Your father and I will continue to fight. We will fight for democracy, for better autism acceptance and assistance, for more cancer trials and better treatments, not just for osteosarcoma, but for all cancers that hurt, and maim and rob. I wish I could close on a happy note, not just for you, but for our readers. All I can say is that I pray that your soul is at peace, and to everyone else out there, be a good human.

Time Passes

Ravi, it has been nearly 4 months since we lost you. Time and space are funny things. Sometimes, I feel so close to you. Other times, all I can feel is grief. As a bus aid, I pass St. Clements Church twice a day. When the bus goes by, I give you a little wave, a thumbs up, and blow you a kiss. This is my twice a day ritual. Somehow, you keep me grounded as I head into the happy chaos of work. I feel your presence most strongly when I am on the playground at Bridge View School. Years ago, Principal Lisa and I poured concrete for a handicapped accessible playground. Since then, over a decade of students have enjoyed this play space. Like y0u, many of my students love to swing. Some can pump themselves into the air on their own. Others are happiest when I I push them high into the sky. It is then and there that I feel your presence. Often, while I am pushing a student, the sun peaks out from behind a cloud, and I know that you are saying hi.

The world is crazy right now. Basic human rights are being taken away. You would not understand this scary new world, and if you were here, I would do my best to shield you from it. You and I were so proud when you cast your vote for President Biden 4 years ago. We rejoiced when he won. Immediately after his administration ended, the world became a much darker place. The Medicaid that paid all your bills the last 22 months of your life is in danger of being taken away. The cancer research that prolonged your short life is frozen. I miss you deeply, but in a way, I am glad you are not part of this terrifying new world, but rather, hanging out with Jesus, and all those who have gone before.

Remember Mr. Rogers? His mother once told him that when things were scary to look for the helpers. There are helpers, Ravi. There are brave men, women, and transpeople who are standing up for what it is right and good. The Right Rev. Budde preached love and acceptance from the pulpit of the National Cathedral. She was the same person that offered the body of Matthew Shepherd sanctuary. There was no safe place for his body to rest until she had him interred at the Cathedral. I hope that you and Matthew and all the saints are dancing in heaven.

Boo Bear, I miss you more than mere words can express. Our house misses your energy. True, we have dogs and a cat and a hedgehog, but we miss your vibrant autistic energy. When I wake up in the morning, first thing, when I am in that state between dreams and reality, I believe, for a fleeting second that you are still here. Then, reality hits me like a freight train. Though life is hard and scary right now, I will continue to show up for you. Your daddy and I will be two of the helpers. Ravi, you were a good human. It is now the job of the rest of us to be good humans. I love you to the moon and back. Peace

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.