Author: snort262

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

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.

Months and Meanings

Dear Ravi,

Until now, I had no idea that July was both Sarcoma month and bereaved parents’ month. We never paid any attention because we were too busy trying to keep up with you! Why would a certain month matter when we still had you around? Now, both Sarcoma and Bereavement month seem glaringly obvious. I hate to say it, but it is rather annoying, or maybe I should say, cloying. I am glad more attention is being given to sarcomas, but I don’t like the way that cancer patients are described. Often, they are described as little warriors, having a smile that lit up the room, as having delightful personalities. This is all very nice, but it tends to elevate the patients to a level that perhaps does not make them comfortable. Ravi, I never saw you as a warrior. You did not “fight” cancer. You were an incredibly brave 22-year-old who lived the best you could with all the curveballs that the universe threw at you. You did not fight cancer any more than you fought autism or epilepsy. You just lived with them, the best that you were able. After your death, your dad and I mourn you deeply, but we do not elevate you to the status of an angel. You were a great kid, no doubts there, but you had your quirks. You escaped out your bedroom window and walked yourself to Super America in your footie pajamas because you wanted some gummie bears. A dear friend describes you as a shark. You would school around until someone left their drink or French fries unattended and then your shot in for the kill. You hated opera and loved Taylor Swift. Like your mom, you fervently believe that the 1980s produced the best music ever. You had a wicked sense of humor and a great belly laugh. But, you were a 22 year old dude. You liked pretty girls and fast cars. I repeat, you were not a warrior, you are not an angel. We miss you deeply, but I am not going to paint your life and your memory as something that it wasn’t or isn’t. Yes, there is a place for sarcoma and bereaved parents. Let’s not glorify cancer or those who are cancer patients. Give space to grieving parents. But, folks, let’s keep our kids human. This maudlin pathos is a bit cloying. I see Ravi in monarch butterflies and cardinals. I see him flying free. He is living his best life now, while those of us on earth shuffle along the best that we can, with our feet of clay. Okay, rant over. Go forth, be good humans, and look for miracles. Love,

Harriet

Incoming cardinal!

Good morning, friends! First of all, I want to thank all of you for your kind words on Mercury’s birthday. We had known that Ravi’s birthday would be a difficult day, but we had no idea how hard reality would hit us on the day that Mercury turned 21.

On a brighter note, Ravi popped in to say hello yesterday. I was coming back into our yard after a leisurely run with the dogs. A male cardinal swooped down and landed on my cardinal yard sign. He fluffed his feathers, cocked his head, and looked at me. I said, ” Hi, Ravi! Nice to see you!” He sat there for a few moments, preened his feathers, and then flew off to a nearby tree. He was definitely in a good mood and strutting his stuff.

So, this is just a short blog to tell you all thank you for your love, support, and prayers. They mean the world to us. Keep looking for miracles. Keep looking for Ravi. He may show up as a carinal, a monarch butterfly, or something completely different. Be good humans. Peace, Harriet.

Happy Birthday, Mercury

Dear Mercury,

Happy 21s birthday to you. We hope that you are well. Though we heard your voice as you facetimed goodbye to Ravi, we have not seen you since you were 18. We miss you. Though the house is full of animals, there is no longer any teen or young adult energy. We still have Jack Jack and Gloria. Shortly after you departed, we adopted Nikki, an orange tabby cat. In December we adopted Raya. a blue merle aussie. She is very sweet and shy but has decided that Dad and I are her safe people. Catherine, the hedgehog, is her usually sassy self. She loves bugs, her wheel, and snuggling in my bathrobe.

What can I say? I just want to talk to you. I never wanted you to leave, I just wanted time to talk to you without Eli chiming in. The last summer you were home, all I wanted was 30 minutes of your time, to go for a walk or to take you out to coffee. When you came home for spring break, I was hoping we could connect, but your brother was in the hospital. Though you visited him once, you did not even acknowledge him, you were too wrapped up in Eli. And, since you paid no attention to Ravi, he ignored you. He fought cancer for 22 months. You never called him or even sent him a card. It was like he did not even exist. Someday, I hope you are able to understand the depth of your loss.

I love you, Mercury, but we are also hurt and angry. You never told Dad your preferred name or pronouns but became furious if he called you by your birth name. We will happily pay for your education, and help you with FAFSA, but you have to talk to us first. We hope you are having a good birthday. We are always willing to talk to you and extend a hand. You have had our phone numbers memorized since you were six. You can call us, but we can’t call you as you changed your number. Give us a chance, we are not complete evil, regardless of what Eli is whispering in your ear. We did not kick you out of the house because you are trans. When I emailed you 2 Easters ago and sent you an Easter basket, you only replied in rage. We will only reach out to you in love. Take care of yourself. You know our phone numbers. Would it be too much to pick up the phone and call? Love, Mom and Dad.

Happy Birthday, Ravi!

Dear Ravi,

Today you are 23 years old and celebrating your first birthday in heaven. I am certain you are having a much bigger party than we were able to throw for you when you turned 18 or 21. I instinctively knew that you would want to celebrate this birthday outside. Yesterday, you daddy and I walked over to St. Clement’s to visit you. The church had just had the carpets cleaned and no one was supposed to go downstairs or to the chapel, but when we explained why we were there, a very nice man let us come inside. We spent a long time in the chapel, talking to you, talking to each other, and just sitting and remembering. It is a very peaceful place to be. On our way out we ran into Joy, who gives the best hugs in the world. We talked for a minute about Gather, the new autism friendly services our church is beginning this fall. We are all super excited about this. In the fall, I am also helping lead sensory friendly Sunday School classes. We will have a prayer, a lesson, and a song. After that students are invited to do a variety of things, both large and small motor, with many sensory tools thrown in for good measure. It has been a while since I have taught, and I am looking forward to this.

This afternoon, your daddy and I met our dear friend, Roberta, at the Como Zoo. We wandered the entire zoo. We saw a baby giraffe and met a very saucy ostrich. The sloths just slept, but many of the primates were quite active. Our favorite part was watching the seals and the sea lions swim. They are so peaceful and aquatic. I could have spent all afternoon just observing them. Do you remember how much you loved watched the seals?

It got hot, so we stopped for a break and a snack. In your honor, I had a red slushie. It tasted divine. Roberta had to leave after that, but your daddy and I went to watch Sparky the sea lion do his tricks for fish. Remember how mom used a clicker to train Rosie, your service dog? Seals and sea lions also learn their skills and tricks via clicker training. Instead of cheese or hotdogs, they get raw fish and ice cubes! At the end of the show, we went to the tropical room. The mama and baby sloth were not there, but there were tons of fish and birds and turtles to enjoy. I think you would have liked it.

Tonight, we walked over to Shish for dinner, meeting our friends Daniel and Robin. I got my favorite, red lentil soup and pita bread. Some things never change. I have loved that dish since before you were born and I continue to order it every time we eat there. Yesterday, we stopped by next door at the Italian Pie shop for vanilla cokes. You would have approved of the garlic bread, it came with a shot glass of pizza red sauce. I have fond memories of you doing shots of that sauce when we would take you to Carbonnes Pizza. First you would do shots, then you would eat the cheesy garlic bread, and then last but not least, you would make quick work of a sausage and pepperoni pizza. These memories make me smile through the tears.

I heard from a lot of people that knew and loved you today. You live on, strong and healthy, and free, in our memories. I see you when I see male cardinals flying by or sitting in trees. Alissa sent me a video of cardinals she saw from her balcony in Hawaii, and teacher Linda sent me a beautiful video of a male cardinal in her backyard fountain. All of these birds looked very happy. My son, I hope and pray that you too, are happy. We miss you so much. Someday, we will all celebrate birthdays together again. In the meantime, please keep showing up as a cardinal, a monarch butterfly, or in any other form that pleases you. I am still working hard on getting your book published and bringing more attention both to autism and to osteosarcoma. I am now working on a second book called Letters to Ravi, Letters to God.

Thank you to everyone who reached out to use today. You are such good humans. Thank you to Karen, who sent the beautiful cardinal yard flag, which I have planted in the front yard. I am grateful to call you all my friends. Go forth, do good works, keep in touch. Peace, Harriet, Ravi’s mom.

8 months

Eight months ago, on a Friday night, we lost Ravi. Time is a weird thing. Sometimes it is very wrinkled and scrunched up. Other times it seems to stretch out for eons. This is how the last eight months have been for us. We are ever grateful for our friends who have walked this path with us.

Next Wednesday, June 18, will be Ravi’s 23rd birthday, his first birthday in heaven. We have given much thought as how to navigate this day. In the morning, we will go visit him at the chapel/columbarium. At noon, we will meet a dear friend at Como Zoo and Conservatory. This was one of Ravi’s favorite places. Seals and penguins always made him laugh. He was not quite sure about giraffes, as they have long gangly legs and purple/green slimy tongues. Otters are always good for a belly laugh. The Conservatory is a good place just to walk and meditate among green growing things. We loved to take the kids here during the winter, just to go someplace warm and smell all the wonderful flowers.

Prior to his birthday, we also have plans. Robert is going soaring on Saturday. I am going to the No Kings protest at the capital. We are having dinner with a good friend that evening. On Sunday, Robert is going to a Father’s Day fly in at the airfield and I am volunteering at a Pride booth for St. Clements. I have a sign ready that says, “Free Mom Hugs”. In little letters down below, it says “glitter not included”.

So, despite not really know what emotions will hit us next week, we have a good weekend plan with ways to reach out to our community. Next Wednesday, please spare a thought or prayer for Ravi who is celebrating his first birthday with Jesus. We wish he were here with us, but we give thanks his is in a place where cancer, fear, pain, and epilepsy have no dominion. If you see a cardinal or a monarch butterfly, or anything else in nature that grabs your attention, that is Ravi dropping in to say hi. Give him a wave, blow him a kiss, and be good humans. Peace, Harriet, Ravi’s mom.