Author: snort262

I am a wife, mom, long distance runner and fierce autism advocate. My background is in education. Currently, I am a PCA, an autism advocate, a fighter for kindness and social justice, and a fervent animal lover.

Ends and Beginnings

Dear Ravi,

August is winding to a close. Today is the first day of the Minnesota State Fair. Like you, I am an introvert and have no urge at all to go hang out with a million sweaty Minnesotans. For the next 10 days, I will be avoiding Snelling Avenue. The places that we used to haunt are on the other side of the fairgrounds, and I have no need to go there.

I met Laurie for a walk this morning. I brought Raya and she brought Luka. We rambled about, looked at plants and animals and let our dogs get in some good sniffs and pee breaks. Later, I returned home and took Jack Jack and Gloria for a run through the neighborhood. On our run we came across two male cardinals having an intense discussion up in a tree. I think it was you and Dave Evans, hanging out and shooting the breeze. You are both incredible people and I am glad you got to meet each other. If you bump into another Dave, Dave Coyne, give him a shoutout from me. Twin Cities Running is still going strong, but we miss him, a lot.

I have just over 2 weeks until your memorial run. I love the name of this race, Finish the Run, and I love the slogan, Run with Intention. Ravi, I run with intention for you every time I lace up my running shoes. I am not fast, but I still love the sensation that running gives me. It brings me closer to you. There is another race coming up called Brave like Gabe. She was a local runner who passed of brain cancer a few years ago. Her run is designed to raise money for rare cancers. I may run this race as well. Races have gotten expensive, but I am happy to run them when they are used to raise money for good causes. I can’t think of a better cause than fighting cancer.

Your daddy is out at the airfield today and the clouds look perfect for soaring. He is starting to study so he can become a glider instructor. He is also taking two classes at the community college, just for fun. Slowly, we are finding ways to leave the house. I am working 2 or 3 days a week and am enjoying it. The person I care for uses an AAC, just like you, and she is smart, funny, and sassy. You would enjoy her. Not much else is going on, but we really miss you. Cardinals make us smile. Keep soaring high and know that those of us left behind will never stop talking about you. We are keeping your memory and your legacy alive. Love you forever. Mom.

Ten Months

Dear Ravi,

It has been ten months since you left us. We miss you always and forever. Your daddy and I have taken to walking over to St Clement’s in the evening and sitting on the green. This makes us feel close to you. Before we leave, we always tie a ribbon on the prayer trellis for you and Mercury. Neither of you are ever far from our hearts. The prayer trellis began during Covid. Joy strung up clothes lines around the green, left out a box of ribbons, and invited passersby to offer up a prayer and tie a ribbon on the line. By the end of the pandemic, the green was completely surrounded in a wreath of ribbons. Prayer is a powerful thing. It brings us together when we are feeling lost and alone.

I went to church yesterday and since then have been reflecting on the many different Greek words for love. Love that parents and children have for one another is called storge. Philos is brotherly love. Yesterday in church, I saw a beautiful example of agape, selfless love. I will explain. There is an older woman in a parish who is suffering either from dementia or Alzheimer’s. She is brought to church every Sunday by another elderly woman, maybe a sister or a close friend? She sits near the front of the church and Joy brings the Eucharist to her pew as she is too feeble to walk very far. I was sitting a few rows behind her with Roberta and some choir friends. Joy was offering up the post-Communion prayer. Suddenly, this woman stood up and approached Joy at the altar. Joy did not skip a beat. She continued the prayer and held out her arms to the woman. She embraced her in a caring hug. Elizabeth seamlessly picked up the service where Joy had left off as Joy led this woman back to her pew. Gently, the two of them sat down together and the woman leaned against Joy, trusting as a child, and Joy put her arm over her shoulders and talked softly to her. The rest of the clergy recessed to the back of the church, singing a final hymn. Joy continued to sit there, holding this woman in a soft embrace. They sat there through the organ postlude and as others left the church, talking softly. Truly, Joy was a shepherd, ministering to her flock, and this one sweet lamb in particular who needed pastoral care and the knowledge that she too was loved, included, and accepted. The world must be a very scary place for her, but to her, Joy was a safe person to turn to. This, Ravi, is agape, in it’s truest form. There are many other Greek words for love, but agape and storge are the ones that are foremost in my mind.

I am starting my new job as a direct care support worker tomorrow and I think it will be a really good fit. The young woman whom I will be helping is also a graduate of St. Kate’s, just like Alissa and Lauren. Speaking of St. Kate’s, I had a great dream about you the other night. You were hanging out with the St. Kate’s basketball team, as was one of your preferred activities when Alissa was in school. In the dream you were laughing and having a wonderful time. I woke up smiling. I hope that there are basketball games in heaven. Right now, Nikik is perched on the back of my chair and the dogs are at my feet. They had good walks and runs this morning. I will run over to the church tomorrow, to say hi to you and place two more ribbons in the trellis, sealed with kisses. Love you to the moon and back. Mom.

24 years!

Dear Ravi,

Today, August 5th, 2025, is your daddy’s and my 24th wedding anniversary. That was a day of record-breaking heat. It was 103 F outside and the unairconditioned chapel at Fort Snelling was not much cooler! The wedding dress that I thought was so beautiful in February was not made for an August wedding. In all of our wedding pictures we look rather shiny. Some people said that we looked radiant. Actually, we were sweating copiously. But the vows were said, the rings were exchanged, and we agreed to be partners until death do we part. It was the beginning of the rest of our lives together. Fortunately, the wedding reception venue had AC. The cake tried to melt, but we got it cut and served just in time. No one fainted. One of my students sang for us, and being jugglers, many clubs were passed. My favorite wedding photo is not a staged photo, but one of me and your daddy passing clubs together. He was in a tuxedo, I was in veil and gown, and we were having the time of our lives.

Today is an odd day. This is our first wedding anniversary without you. You were only 6 weeks old at our first anniversary, about the size of a football with a great mop of dark curly hair. Everyone said that your hair would fall out, but it never did. Today, your daddy and I will walk over to St Clement’s to sit on the lawn and talk about you. Later we will go to Shish, one of our favorite restaurants. You always had a penchant for their fries. I have to admit, they are very good.

Tomorrow, I begin my first day of work as a PCA. I miss being a caretaker and I think this will be a good fit. I am only working about 20 hours a week, which leaves me plenty of time for other endeavors. Your daddy is also looking around for part time work. Nikki, the cat, has a 22 hour a day job, sleeping. The rest of the time he begs for snacks and chases bugs. Right now, he is on the back of my chair and the dogs are crashed at my feet. You would like our newest dog, Raya. She is very sweet. Dear Boo, I am holding you in my heart today and every day. Love you forever. Mom.

Ravi Speaks

Dear Ravi,

I heard you loud and clear this morning. I went to the 10:30 service because I wanted music more than I wanted quiet meditation. I got that and more. There were two very animated toddlers at the service. I love the pitter patter of little feet during Joy’s sermon and squeals of joy from toddler lips. These sounds make the church feel so much more alive!

After the service, I had half an hour before our Sunday School orientation and meeting. I normally skip coffee hour because I don’t know that many people at the 10:30 service, and by nature, I am very shy. So, I slipped down to the chapel/columbarium to visit you. I checked in with you, cried a little bit, and was trying to determine what to do next. Suddenly, and clearly, I heard your voice in my mind. You said, “Mom, you need to hang out with the living, not among the dead.” I whipped around to see where this voice had come from, but you were gone as suddenly as you had come in. So, I blew you a kiss and headed upstairs. I got some coffee and then did see a few familiar faces. I happily chatted with people until it was time to go to the basement for our meeting.

The meeting was a success. There are 6 of us who want to be involved, plus Elizabeth. I agreed to help out every Sunday, except for marathon Sunday, when I have no way to get to the church. Also, this will set a rhythm for my week. I would much rather be with the youth of our church every Sunday, rather than once or twice a month. I have also been asked to be on the Gather steering committee. This group will design and run our Autism/sensory friendly Sundays once a month. I have yet to learn what my role in the committee will be, but I am very excited both the be a Sunday School teacher and on the Gather board. Sometime in the fall, I am also giving a talk about Autism and Autism advocacy at the adult forum.

Tuesday is your dad and my 24th wedding anniversary. Because you came a bit earlier than expected, we have never celebrated an anniversary without you. I don’t yet know what we are going to do, but you will be part of this day, just like you always have been. We will stop by the church to talk to you and let you know that you are still a beloved child of God and of our family.

This will be a busy week. I return to therapy on Monday after Kathy was out on medical leave for three weeks. I am helping a friend with some legal issues. On Wednesday I begin my work as a direct support provider. I am only working 2 shifts a week, for 9 hours each. This will hopefully make me feel useful, gain me some income, but also leave much time for other pursuits, such a writing advocacy, and running. I am running again, and it feels good, but I am very slow. Running provides a release for me and also helps me to feel close to you. So, thank you for reminding me of the outside world. I have a lot of work to do among the living, even while I honor the dead. How I wish that you were not part of the non-living world. I miss you, tons. This fall, the normally quiet basement of the church will fill up with the good noise of children. It may sound like happy chaos, but that is just what you loved. We are setting up the classroom to be sensory and autism friendly. I think you will approve. You are my first thought when I awake in the morning and my last thought as I fall asleep at night. Love you to the moon and back. Mom.

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.

Hello, my dear Cardinal

Dear Ravi,

Your daddy and I are back from Virginia and are on the hunt for more cardinals. Roberta has seen many of them on her photography retreat to Canada. Maybe it is too hot in Minnesota, and you fled north?

Generally, I attend the 8:15 church service, but this morning I felt called to attend the 10:30 service which has music. The choir sang many of my favorite hymns. As you know, St Clement’s is old. We do not have air conditioning in the church. All windows were open to catch even the faintest whiff of a breeze, and everyone had a program or hand fan at the ready. None the less, we all melted. At the final note of the postlude, there was a mass stampede into the air-conditioned parish hall! After a lovely visit with our oldest parishioner, Pearl, who was born in 1926, I retreated to the much cooler chapel, columbarium. For me, the chapel is both a place of respite and grief. I can talk and visit to you, but there is never a time when the tears do not flow. I miss so much, my son. I am now at home with the pets, and your daddy is out at the airfield, hopefully not baking.

Yesterday, your daddy and I had an amazing Teams meeting with a lovely lady named Ruth. She lives in the UK, and lost her son Fergus to osteosarcoma in 2022, 10 days shy of his 13th birthday. He endured the exact type of chemotherapy that you did. Ruth is collecting these stories and interviews of parents and caretakers to try and find a common thread in the various stories of your disease. As you know, the treatment regime for osteosarcoma is at least 40 years old and barbaric. There are fewer than 900 cases a year in the US and Ruth says there are less than 30 cases a year in England. Osteosarcoma is rare, and since it is rare, it does not get much monetary help, support, or money for clinical trials. Ruth, Jenn, Jonn, and your daddy and I agree on this point. There is a desperate need for better treatments and outcomes. Just because this disease is rare does not make it any less important to treat.

The Rev. Elizabeth has asked me to be on the steering committee of the Gather group, the 5 year plan we have to make our church more inclusive and autism/sensory friendly. I am honored to be on this committee. In the early fall, I will be presenting an Autism 101 class at the adult forum, for those who want to learn how to make our church more welcoming. I am also teaching a sensory friendly Sunday School class for 5 to 10 year olds. I am very excited about both of those things.

Making our world more autism friendly has been my calling since 2004, when you were diagnosed. I blog, I speak, I will teach. I am also feeling a faint call from another direction. I want to bring more awareness to osteosarcoma. As I was telling Roberta, it is easy for me to write about you. I can happily do that all day long. It is much more difficult for me to use mouth words to describe you and the last 22 months of your life. I can do it, but it leaves both me and your daddy gutted and wrecked for the rest of the day. I have nothing but sheer admiration for the Ruths, Jenns, and Johns of this world who delve into the complex and tragic world of osteosarcoma on a daily basis. I want to do this for you, alongside my autism work, but I will have to pace myself and measure out my spoons carefully. It has been less than 10 months since you left us and I am still very raw.

Right now, the dogs and cat are dozing at my feet. I have the AC on full blast. The house is very quiet. I miss your noise and your energy. I am waiting for the temperature to drop a bit before I go for a run/walk. I have the race I am running for your coming up in 6 weeks, and I am excited about it. If you are hanging out with Dave Evans in heaven, please give him a hug from me. He was a great guy and deeply missed. I love you to the moon and back, Ravi. Mom.

I missed you, Ravi

Dear Ravi,

Your dad and I spent a wonderful week in Virginia. We flew into Richmond and stayed a few days with April and Rick, who are the husband and wife team who married us. I have known April since infancy and when she was 15 and my very first babysitter. I firmly believe that without April and Aunt Pidge, I would not have had a female to bond with. I am forever thankful. After a few days with the April and Rick we went to Fredericksburg to see Etta, Denny, Mom Sue, and Celia. Etta and I have been friends and running partners since 1991. We were roommates the year of 1992-1993. Years have gone by but we still keep in touch. We spent Thanksgiving with them last year, right after losing you, and the whole family gave us a soft place to land. This was a happier trip.

It is haying season in Virginia and all farmers are busy. Etta quickly taught your daddy how to drive a tractor. Red, who had come over to help said when he saw Robert driving the tractor solo, he looked “proud as a peacock”. Farming definitely is good for your daddy. He said he saw a cardinal in the back part of the field and knew it was you checking in to say “hi”. He also saw a 6 foot black snake, tons of bunnies and some hawks. I saw dozens of dragon flies which told me that Jonathon was nearby. The next day was time to bale hay. We got several turns of the 200 acres done before the baler decided to up and quit. We all spent a lot of time pulling hay out of the gears and trying to convince it to go again. No luck. Red and Etta went back to Red’s farm to get his baler and got some more of the field done before it got dark. When Mom Sue was not baling hay she was kicking my rear end in Scrabble. It was so fun to tag after her, doing farm wife chores and listening to her stories. After a competitive game of Scrabble, we went back out in the field to rake hay. She is a very spry 78-year-old who can rake twice as much hay as I can without missing a beat. Truly amazing.

That night your daddy and I took Denny and Etta out for Mexican. All of us were too tired to even think about preparing a meal. By 10 pm we were all sound asleep in bed. Farming will do that to you. Two of the three mornings we were there, Etta and I got up at 6am and ran trails. Sweet boy, I have not trail run since 2023 and it was awesome. I can still run! I am not fast, I am not pretty, but I can chug right along. Running trails with my best friend gave me such unspeakable joy.

We returned yesterday and the pets were very happy to see us. I immediately reserved Chris, our house sitter, for Thanksgiving week so we can return to Virginia. Last night I heard from Celia that Red’s baler had caught on fire. Luckily, they were able to move the tractor away in time, a fire truck came, and no one was hurt. All good things. Oh, I forgot to tell you, the other morning on the way to work, Denny got hit by a buck. It dented in the driver side door and made the front fender look most unhappy, but he is okay. They have a rental car as his car will be in the shop for a couple or weeks.

So, my dear boy, that is the summary of our last week. I am glad you and Jonathon made it to Virginia. Apparently, my southern accent has come back. People keep commenting on my “cute accent”. I guess that they are not used to people who say y’all, or ma’am. Oh well, we will see how long my accent stays. I rather like it. Ravi, I love you tons and miss you. I know that you are flying free. I will look for you with the cardinals. Love you to the moon and back. Mom.

Bird Rap Battles!

We have not seen any cardinals in a week or so, but apparently Ravi has set up shop in a tree in Clarksville, Indiana and is making quite the racket! My dear sister-in-law, Cindy just texted me this morning. For the past few weeks there have been two birds have a bird rap off contest outside her bedroom window, bright and early, every morning. The cardinal, ie: Ravi, has taken over the big maple in her side yard. A California wren lives in a redbud near their bedroom window. For those who do not know, wrens are about 2/3s the size of cardinals but are very noisy and feisty. This duo has been waking up very early every morning to belt out birdie rap songs and debating about who has dominion over the tree. Cindy says that both birds are very wroth, but no fighting, just lots of fluffing of feathers and birdie ballads going back and forth, starting about 5am.

Ravi may have been non speaking, but he did have a voice and could make tons of noise when he felt like it. We used to joke that he was the loudest non speaking person we had ever met. It is no surprise to us that he came back as a very vocal bird. He had so many thoughts in his head, and it was not until he got his AAC, Sam, that he could begin to get them all out. There was a certain energy that he brought into every space. I could feel it as soon as I walked into the house, whether he was was chatting with Sam, stretching his vocal chords, or just chilling. I miss that energy. My house, despite having 3 dogs, 1 cat and a hedgehog, is very quiet.

We are very eager to go to Virginia later this week. The cardinal is the state bird and I look forward to many Ravi sightings. I cherish the thought of him perching in Cindy’s tree, singing the song of his people. Fly free, Boo Bear, and sing to your heart’s content. Love you to the moon and back. Mom.

Nine months

Dear Ravi,

It has been nine months since I held you in my arms, kissed you goodbye and let you fly free. Sometimes, nine months seems like forever, other times it seems like it was just yesterday. Time and grief are peculiar that way. Today we are going to celebration of life ceremony for our friend Dave. He was another person whom your Daddy and I held in our arms, along with his loving niece Laurie, until he took his last breath. I have to admit, Boo, Daddy and I think that we have said enough goodbyes and done enough end-of-life care for a good long time. I know that you and Dave are dancing in heaven, but those of us on earth miss you deeply.

I am slowly easing back into the work world. I have had interviews this week for both a tutoring job and a care taking job. I don’t want to work more than 25 hours a week, and I won’t do end of life care. I need to get out of the house a bit and engage with the outside world.

The exciting news is that your daddy, a dear friend of mine, and I are planning a trip to Spain in 2027. We want to hike El Camino. There are several people at St. Clement’s who have done this pilgrimage, and I am eager to talk to them about their adventures. I have never been to Spain, and I love to hike. I would love to do a pilgrimage for you, Boo Bear. I have no idea if cardinals live in Spain, but I am positive that you will check in while we are on our journey.

I need to get ready for Dave’s celebration of life. I hope that you and he are having grand adventures in heaven. The dogs are happily curled up at my feet. The cat is purring. For the moment, life is peaceful. I miss you tons.

Love, Mom.

July??

Dear Ravi,

How is it already July? I blinked and the calendar moved. We spent the 4th July very quietly, as we do not believe that our country has anything to celebrate while our citizens and our immigrants are being oppressed or disappeared. The afternoon of the 4th, I joined Women Against Military Madness on the corner of Summit and Snelling. We chanted and prayed for freedom for Palestine, freedom from war, and freedom for those who are oppressed. It felt good to join people of like minds and speak out freely. We had lots of honks and peace signs from passersby. Luckily, we were in the shade because the heat was oppressive. I will return to this group of peacekeepers every Friday from 4 to 5 pm.

I may have mentioned before, July is both Sarcoma awareness month and child loss month. I am on social media only sporadically and am trying not to doom scroll. It is a slippery slope. Last Sunday, I was happy to leave my phone at home and go to church. I went to the 10:30 service instead of the 8:15, as I was in the mood for music. What a great day to go, the choir sang all my favorite hymns. Despite all the windows being open, the church was stuffy and hot. It was a relief to go down and visit you in the chapel. I sat by niche and talked to you for a long time. We could hear the muffled conversations from coffee hour upstairs, people coming and going. The church is a lively place on Sunday, a good place to be. Your daddy and I will come over later this week, when the church is open and visit you. We walked by on Sunday evening, but it was all locked up.

Ravi, I am at a crossroads. I am feeling the urge to return to the working world. I don’t want to work full time, but 20 to 25 hours a week would be fine. I had a preliminary interview for a tutoring job this morning, and have an interview with Visiting Angels, as caretaking group tomorrow afternoon. What I really want to do is to sell my book and be an author, but I need something to pay the bills in the interim. We shall see what happens. I am not taking a job just to have a job, a job has to have meaning to me, and a decent rate of pay.

The exciting news is that Daddy and I are going to Virginia next week. We are flying into Richmond and spending 3 days with April and Rick and also seeing a childhood friend. Then, we will go see Etta and Denny and family in Fredericksburg for 4 days. It is summer on a farm, and we will be busy. I think Daddy has already been conscripted to drive a tractor. I will slather him with sunscreen, put a big floppy hat on his head and hope that he does not wilt. We will also see Nancy and Red and celebrate the end of her treatment for breast cancer. The visit would not be complete without a stop by my alma mater. Don’t worry about the pets, Chris will take good care of them and the house while we are away.

I suppose you heard about the tragedy in Texas. Your daddy and I are heartbroken. So many people were swept away in the flood. I know that they are now dancing with Jesus, but their families want them back. We pray for peace and closure for those left behind.

I miss you, Boo Bear. I miss your smile and your laugh. I know that you are flying free. Friends chime in almost daily to give me cardinal reports. Sometimes, I see you when I am out and about with the dogs. Last night I saw lightening bugs, something I have not seen since I was a child. Are there lightening bugs in heaven? We went to Taco Bell for you last week, the first time we have been back since we lost you. I had a freezie in your memory. I smiled through the tears. Sweet boy, know that your mama loves and misses you. The Cardinal is the state bird in Virginia, so I will look for your there. Forever and ever, your loving mama. Harriet.