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.

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.

From a Boulder to a Crater

Good afternoon, friends, and happy Pride! We are bumping along over here at #TeamRavi. We miss him deeply. Early on in our grief journey a friend of Robert’s gave him the analogy that deep grief is like a boulder that lands in the middle of one’s living room. Everyone knows that it is there and tries to tiptoe around it. Sometimes though, one is short of patience, or calories, or endurance and runs right into it. Bam! And it hurts. Robert suggested this analogy to his therapist last week. Instead of a boulder, she suggested a crater. There is this massive hole that appeared in the middle of the living room. On good days, one can see the hole and navigate around it. On not so good days, one walks straight into it and rapidly descends into a grief spiral. This analogy suits us better. There are some days that we can tiptoe around the crater. Robert will go soaring or juggling. I will run my dogs or go for a walk with friends. I distract myself with writing and advocacy work. Other days, when I can barely pry myself out of bed, I walk out of our bedroom and descend into the abyss. Sometimes, I don’t come out for many days. I don’t reach out to friends, I stop eating, I just plain old don’t see the point of doing anything anymore. This is the crater in the living room. Fortunately, Robert and I do not usually fall into the crater at the same time. Also, we are blessed with a wonderful group of friends and our church.

Today, my writing prompt was “Who would you like to spend the most time with?” The answer is obvious. I want to spend time with my offspring. I want to talk to them, hug them, laugh with them. But one is gone to heaven and the other has struck out on their own. This is a more unambiguous grief. Mercury is still alive, I hope, but we have not seen her in over 2 years. They too, are deeply missed.

Several nights ago, I was at a sign making gathering at St. Clement’s. We were making signs for peace, for pride, for protests, or anything we felt strongly about. There was a group of young girls there who brought me sheer joy just through their energy. They were engaged in sign making, pausing for snacks and random dance offs, and laughing hysterically, just enjoying being with their friends in a safe place. No adult was telling them to sit down, be quiet, to not be so much, to not call attention to them themselves. There was not an iPhone or iPad in sight. It was so refreshing to be around that young energy. It gave me a ray of hope for the upcoming generation of young women. I had forgotten how much I loved being surrounded by pre-teens and their utter exuberance in life. I made my signs and went home smiling.

Next weekend I am marching in the No Kings protest on Saturday, and volunteering at our church booth at Pride on Sunday. These are the things that get me out of bed in the morning when I really don’t want to emerge from my safe cocoon of blankets. Once I get out of the house, I am usually safe from the crater.

Ravi has a birthday on June 18. Mercury has a birthday on June 25. I really do not know how I am going to navigate these two days, but I will definitely be navigating them with Robert, outside of the house. For Ravi, we will go visit him in the chapel/columbarium. Then we might go for a long walk, or to the zoo or the conservatory. On the 25th, I will do what I do every day, which is to release my love for Mercury into the universe and hope that it somehow finds her. I remind myself that I am still a mom. I gave birth to two amazing children. They may not be in my arms, but they are never away from my heart.

Until the very end, Ravi was a doer. He was not passive. We will not be passive, either. I encourage you to involve yourselves with something greater than you. Go to a rally. Hug your kids. Help a random stranger. Be a good human. Peace, Harriet.

Putting Running Shoes Back On

#TeamRavi, you have been cheering us on for years and continue to do so. We are so grateful. Ravi is not forgotten. As most of you know, I have been a distance runner since I was a pre-teen. I ran my first road race at age 13 and my first marathon at age 14. For me running, is how I best experience the world, how I play, how I recharge, and how I pray. Over the years I have used my running to raise money, first for autism advocacy and later for osteosarcoma. Running comes as naturally to me as breathing, until it didn’t.

On October 11, 2024, I ran 6 miles in the late afternoon. There was nothing particularly memorable about that run. I marked my miles on my calendar and resumed taking care of Ravi. That night, Ravi passed away and I stopped running. This is not to mean that I stopped moving. Since that fateful night, I have grief walked at least 1,000 miles. But, for some reason, I could not run. I was afraid that I would shatter into a million little pieces and would never be able to put myself together again. So, I walked. Robert walked. The dogs walked. We paced the neighborhood at all hours of the day or night. But I couldn’t bring myself to run, until this week.

I was out walking my dog, Gloria, earlier this week. She has been my long-time running partner. I was about 1.5 miles from home. Suddenly, I wondered what would happen if we just picked up the pace a little and tried a jog. As we gradually gained a bit of speed and forward momentum, my legs and my lungs began to remember what running used to feel like. By the time we were home, I was pleasantly fatigued, but not completely wasted. Today was a grey, rainy day. In the late afternoon the downpour stopped and on impulse, I grabbed Gloria’s leash, some poop bags and a handful of dog treats. I had a sudden goal in mind. I wanted to run out a mile and then back a mile, without stopping. I did not care about time or pace; I just wanted to move my legs. The first few blocks of the run were more like a shuffle. Gradually, I fell into a rhythm. We made it out a mile, and I spent about 2 minutes just walking and bringing my heartrate down. Soon, I felt like running again, so we took off for home. The mile back passed more quickly than the mile going out. I was thoroughly warmed up at that point, my legs did not feel heavy, and my cardio was pretty decent. A different feeling than I was used to was welling up inside of me. I sat with this feeling for moment, trying to recognize it. Suddenly, it hit me. I felt happy. Not elated or joyous, just happy and somewhat proud of myself. It was a good, albeit unusual feeling. I put Gloria in the house and got leashes for the other two dogs. As a gentle cooldown, I walked them 4 miles, giving them ample time to sniff to their hearts content and check the local pee mail.

Later, I look back at this run. It wasn’t elegant, it certainly was not fast. A herd of turtles probably could have beaten me with little effort. But I feel good. I am looking forward to tomorrow when I can run again. I want to slowly work my way up to 3 miles of running by the end of this week. I am toying with the idea of finding a local 5km to jump into before I run the Finish the Run 5km in September. The 20-, 30-, or 40-year-old Harriet would have scoffed at today’s effort. She would have viewed a 2-mile run as a warmup for a much longer adventure. But I don’t care. 54-year-old Harriet is content. Tomorrow is supposed to be sunny, and I want to go for another gentle run. Today represented a mental breakthrough. I was able to take my grief for a run, and it did not shatter me. Nothing bad happened. For this, I am very grateful. I feel blessed. From the time he was a baby, Ravi knew that his mom was a runner. Maybe he is surprised that I took a 7-month sabbatical. At any rate, I am back. Running is how I love to move my body, how I problem solve, and how I pray. I am grateful to have this gift back in my life. I am not fast, but between my running and my writing, this is how I can best show up for my son. Be good humans, wave at runners. Peace, Harriet, Ravi’s mom.

Off The Rails

Social media is a funny thing. Mostly, I use it to look for a send silly cat and dog pictures to my friends. It allows me to stay in touch with people I otherwise would not hear from. Sometimes, however, social media gets a bit nosy and a bit creepy. Follow along.

I wrote extensively about Ravi in the last two years of his life. #TeamRavi gained momentum and followers. Our friends were our link to the outside world, cheering us on while we were confined to one hospital room after another. During this time, social media decided to that I needed to see lots of entries on cancer. This was the good, the bad, the ugly, and the flat out absurd. I met some extraordinary people, and I got a lot of spam. I never did find any good information on osteosarcoma, but I did get ads for lots of clinics in Mexico that did not take insurance but claimed that they could cure cancer with sound waves directed into the bone and a diet of coconut. For obvious reasons, I hit delete and kept on moving. After about a year of this, social media decided that my kid’s time must be up and started sending me articles on hospice care. At that time, this was the farthest thing from our minds. Once again, I hit delete and kept on scrolling. After Ravi passed, I was besieged with articles and links on grief and child loss. Some of this was useful, most of it was maudlin and not worth my time.

Last night, things got truly weird and went off the rails. Not one, but two links popped up under grief, but this was no ordinary grief post. This was a “cutting edge seminar” on grief counseling that would let a mourner get in touch with their loved one’s ghost! To quote a dear friend of mine, “I shit you not”. First of all, the idea of ghosts has been around forever. Since when do they need cutting edge technology to communicate with the living world? Why do I need cutting edge technology to talk to a ghost? Can’t I just say “Hi” and they say “Boo!” and we are done? My priest, Joy, says ghosts are bad theology. Maybe so, but I have seen enough weird things in my life not to truly discount the existence of ghosts, or something other worldly. Anyway, I let out a snort, hit delete, and kept on scrolling, as one does.

So, there you go. Social media is weird. It tries to be predictive, and often greatly misses the mark. Yes, eventually we did need help with hospice, loss, and grief, but we did not need social media leading the charge. I don’t need a seminar on grief and ghosts to talk to Ravi. I talk to Ravi all the time and I firmly believe that he hears me. I see him in the sunrise, in monarch butterflies, and in cardinals. In ways, he is tangibly present to me. This does not mean that I don’t grieve him deeply, but I know that his spirit is alive, happy, and free of pain in a plane of existence which I cannot even fathom.

I will wrap this up by saying that social media is not the real world, or even a shadow of the real world. It is just a mishmash of pictures and words. No one’s real life is what they portray on the internet. It is “just sound and fury signifying nothing.” We can “strut and fret” all we like, but in the end, it is the work that we do in the real world, the outside, tangible world, that makes a difference. So, this is my plea to you. Log off and go outside. Touch the grass. Take a walk. Look for cardinals and monarch butterflies. Breathe deeply. Be good humans and we will be in touch. Peace, Harriet, Ravi’s mom.

Out and About

Hello, #TeamRavi! It is beautiful spring weekend, and our friend has been seen in the form of a cardinal twice in the last two days. He is looking most perky and dapper. The first appearance was when I was driving up Summit Avenue. I looked over at the green space in the middle of the road and saw a cocky young male cardinal. I said, “Hi, Ravi!” and he turned his head and looked straight at me. No joke, I swear that the bird smiled at me. The second encounter was almost in the same place, going the other direction on Summit. I was walking two of our dogs. The bird came flying towards me, did a few acrobatics in the air, just to show off, and landed in a nearby tree, where he commenced to fluff out his feathers and preen. Obviously, he is feeling very good about himself. The red feathers made a stunning display against the backdrop of green leaves.

Things are up and down these days. I relish the sunshine and the warmer weather. I am waging a losing war on the bunnies who keep snacking on my flower beds. Robert has been up soaring lately, and his parachute just arrived. It came from the manufacturer with a bottle of nice wine, saying, “Hope this is the only thing you ever need to open!” With all luck, Robert will never have to open his chute, but it is always a good thing to have while soaring, particularly in competition. Weather permitting, he is hoping to go up again this week.

When I was out running the other day, I saw two beautiful dragon flies. These symbolize Jonathon, Alissa’s older brother, who is now hangout out with Ravi. It is a great week when I can see both tangible signs of both of these incredible young men. Death has not held them back. There is no more epilepsy and pain. Truly, they are flying free. Enjoy your weekend and remember those who paid the ultimate sacrifice this Memorial Day. You are all good humans, and I am proud to call you my friends. Peace in this crazy world. Harriet, Ravi’s mom.

God speaks, God moves

Good morning friends. It is still dark outside, the birds are not singing yet, but my muse has a few things to say.

My memories of last October are spotty at best. Some images will never leave my mind. Other times, forgotten images come bubbling up. Today, I woke up with two very clear memories. The first involves the word columbarium. While Ravi was in hospice, my goal was to spend every moment with him. My focus was only on him. I adamantly refused to make any plans for after he passed, because he was still with us and I wanted to focus on the living Ravi for as long as I could.

Time wrinkles here. I think this happened a few days after his passing. I was sitting in my favorite chair, praying and meditating. The word, columbarium, suddenly bubbled up in my mind. I had never even thought about this word before. I grabbed my phone and texted Elizabeth, our associate rector. I asked her if St. Clements had a columbarium, and could Ravi find a home there. Immediately, she answered me. Yes, our church has a columbarium in the downstairs chapel and St. Clements would be proud to give Ravi a resting place there. Looking back on this, I realize me instincts, or my ability to listen to God were exactly right. There was no reason to plan for Ravi’s demise while he was still living. I just focused on him and let God sort out the details.

October 12, 2024, is a blur in our minds. Ravi had passed and Robert and I were shattered. One by one two by two, our friends came to sit with us, to hold us, to mourn with us. Our wonderful rector, Joy, was out of town that weekend. I did not know when she would be back, or if she knew about Ravi. On impulse, whim, called by God, I picked up my phone and texted her. All I said was, “Can you please come?” I hit send, and there was a knock at the door. It was Joy, who enfolded us in huge hugs and just sat with us and let us weep. I am completely convinced that she was sent to us by God at that exact moment.

Slowly, the memories bubble up from last fall, often in the form of dreams. I want to end with something I find curious and totally off subject. When I prepare a blog to be written, Word Press suggests tags to go along with it, to attract more readers. Sometimes, the tags make sense, other times they are way off base. Whenever I talk about God, which is a lot, Word Press suggests that I tag this as fiction. If I even mention running, such as in my last post, Word Press wants to tag it as running, fitness, marathons. Hmmm. Yesterday, I wrote about Finish the Run 5km. Word Press adamantly wanted to tag this as a marathon. I have run plenty of 5kms and plenty of marathons. They are NOT the same thing. Ah well, AI, what can I say? Once again, thanks for reading. Be good humans, look for Ravi when you see cardinals or butterflies. Peace, Harriet.