Childhood Cancer Awareness Month

Dear Ravi,

I have to admit, I am tapped out. It is only halfway through the month, and I am exhausted. Running the race 2 weekend ago for you was wonderful. I am looking forward to running another 5km, Brave Like Gabe, this weekend. Together, lots of runners are raising money for better outcomes for rare cancers, including osteosarcoma. But more and more people want to hear the story of your cancer journey. Ravi my love, I can happily talk about your life all day long, but I really don’t want to write or chat about the end of your life. We are coming up on the one-year anniversary of your passing and I am too raw, too tired, to share. I am digging deep and doing something unusual for me. I am telling people no. Not forever, but no for right now. Maybe in another year or two I can share your cancer story, but right now I am just trying to put one foot in front of the other.

On a different note, if the church seemed more lively than usual yesterday, there was a good reason! It was the first day of Sunday School. I am happily co-teaching a class of 8 girls, ages 5 through 10. They have amazing enthusiasm and energy. Being around them is a joy. You loved school so I imagine that the noise and clamor of young learners made your heart expand several sizes. St Clement’s is very much alive. After I taught Sunday School I went upstairs for the 10:30 service. Joy preached, using one of your favorite children’s stories, The Runaway Bunny, and it was exactly what I needed to hear. You cannot outrun my love, on either side of the grave, and we cannot outrun the love of God. After the service I retreated downstairs to visit you. Sunday school and the service had taken all of my spoons. It was a relief just to sit in the chapel, relax, and talk to you. Eventually, I emerged and made my way home. Dad and I took several long dog walks. We are thinking of planting a tree in your honor next month. I don’t know what type of tree yet; I will go to the nursery and see which tree calls to me.

Ravi, you visit me so often in my dreams. Interestingly, you do not have Sam, or any other AAC, nor do you need mouth words. You seem perfectly content and happy. There must be other ways of communicating in heaven that we folk on earth cannot even fathom. Please look out for our friends who are going through chemo. You know how hard that journey is. We can both support them in prayer. Sometimes, prayer is all I have to give.

So, this week and the rest of the month is going to be one step at a time. I will run a race for you. I will blog about you. I will spend time with people who knew and loved you. I will try to take care of myself and your dad. I will pray that Mercury will one day reach out. Time is weird. Sometimes, it feels like I haven’t seen you in forever, other times, the months pass in the blink of an eye. Maybe that makes more sense in heaven, too. Not a lot in the world makes sense right now, but my love for you continues forever. Love, Mom.

11 months, 24 years

Dear Ravi,

It has been 11 months since I last held you in my arms. It has been 24 years since I stood in my middle school classroom watching the second tower fall. Both of these days are etched in my brain forever. I miss your funny laugh and your goofy smile. I miss how you talked to me through Sam. I miss waking you up in the morning, putting you to bed at night, and all the good times in between. I miss a time when our country was more innocent. I even miss being able to walk to the gate to meet someone getting off of an airplane.

The world is a chaotic and violent place right now. Much as I love and miss you, I am glad you are not here to see it. I have no idea how I would explain it to you. Your world was full of good, caring people who loved you. You had never seen a gun, you had never been attacked, and for all of this I give praise to God.

I wasn’t even pregnant with you on 9/11/2001. Your daddy and I had been married less than 5 weeks. It was the start of a new school year for me as a teacher and a new school year for me as a graduate student. Your daddy was working at Sun. We had so much to look forward to. I remember little of that day, just fragments and snippets. I do remember I banned the portable TV from my classroom, in a vain attempt to make the horror go away. I remember a few weeks later I was at the start of the Twin Cities Marathon when someone announced that the US had just attacked Afghanistan. A few weeks after that, on November 13, I fainted, fell down a flight of stairs, broke 2 ribs, and discovered that I was pregnant with you. You always did have a certain way of making your presence known.

Since that time, wars and presidents and shootings have gone on. Our society seems numb to it all. I am not numb. I feel like I am caught in a horrible nightmare from which I cannot wake up. I sense you in my dreams and right when I wake up, and my heart leaps. Then, reality sets in and I realize that all I can do is hold your memory in my heart and the great love I have for you in my actions with others.

Ravi, you lived a life of love. In your memory I try to carry that on. Your daddy tries to carry that on. Maybe from where you are now you can make sense of this crazy world or at least have that Perfect Peace that Jesus spoke of. Please know you are always in my heart. I feel you when I run, or I see a monarch butterfly or a cardinal. The veil between you and I is very thin. One day, we will meet again. In the meant time, I love you to the moon and back. Mom.

Finish the Run

Dear Ravi,

Yesterday, I ran a 5km race for you. Finish the Run 5km was set up in memory of a local elite runner who passed away on a run in his neighborhood 10 years ago. The first year was just a gathering of his family and his running friends. Over the years, the numbers grew and it turned into something much bigger. Everyone was given a bib with a number and a space to write the name of the person for whom they were running. I chose a bright red Sharpie and wrote Ravi, #TeamRavi, in big letters. It was a very happy race. Strollers and dogs were welcome.

My training runs with the dogs have been slow. Generally, I putter along at about an 11:30 minute mile. I also mix in walking sections to keep my heart rate at a good level. My hope was to run the race between 35 and 40 minutes. Breaking 35 minutes was a reach plan. The day of the race surprised me. It was a beautiful fall day. I felt good. I decided not to look at my Garmin but just run by feel. If I looked at my watch at all, it would be when it beeped every mile. I set off towards the rear of the pack, but ahead of the walkers. The sun was shining, and we ran over Stone Arch Bridge. I looked at my watch at the one-mile mark. To my surprise, my time was 10:23. At that point I fell into a wonderful state of flow. I could feel the miles passing beneath my feet but had no real sense of the passage of time. The next thing I knew was the finish line was in sight. I picked up my pace a bit and dodged some walkers with strollers and dogs. Your dad, Margaret, and Shawn were waiting for me at the finish line. I stopped my watch and looked down. Final time, 30:57. I was stunned. We all shared hugs and pictures and eventually headed home. The veil between the living and those who have passed was very thin at that race. Ravi, I could feel your presence, and you kept me strong. Thank you.

Last night I discovered another 5km race in 2 weeks. It is called Brave Like Gabe. She was a local runner with a rare form of cancer who passed in 2019. Her race has been run every year since 2018. As you know, funding for rare cancers is my jam, so I promptly signed up and gave a generous donation. It just felt like the right thing to do.

Ravi, my love, I feel you when I run. Your spirit races free with me. You are soaring. I was proud to run with you. More races to come. Love you to the moon and back. Mom. #TeamRavi.

292 is 292 too many

Dear Ravi,

Please forgive my tardiness. You are never far from my thoughts and my heart, but my muse has gone mute with grief in the last week. As you know, there was a shooting at Annunciation School, during mass last week. Sweetie, I was a Cath0lic School educator for over 20 years, starting before you were even born, or your daddy and I had gotten together. I have taught in rich neighborhoods; I have taught in neighborhoods riddled with poverty. As school shootings became more common, I would always tell my students that if they were in any danger, to run to the church, they would be safe there. Again, and again the gun lovers in our country send school shooting victims thoughts and prayers. But Ravi, faith without works are dead. The 2 children who were killed and the 21 who were injured were literally in church, praying, when they were attacked. After Columbine, the gun lovers should have said that enough is enough. Then, I thought that Sandy Hook was be the end point. But school shootings continue, and society has become mostly numb, except for those who have directly suffered unspeakable loss. It is too easy for young people to get their hands on firearms. The background checks are not stringent enough. I am not saying that gun ownership is wrong, I grew up in a household of guns. I respect them and know how to handle them. But the regular person on the street does not need a military grade firearm. Switzerland has more guns per capita than humans but has never had a school shooting. They have firm gun regulations which are country does not. America does not need thoughts and prayers. We need change at a federal level, and we need it now.

The day of the shooting I was supposed to meet a friend for coffee. I heard about the horror at Annunciation, and we pivoted and decided to meet on the church green. Soon after, daddy joined us. An hour later Joy and Elizabeth came out and sat and prayed with us. In our own small way, we were keeping vigil. At church on Sunday Joy announced that after the Tuesday Compline service we would ring the chimes 292 times, for all the souls lost in school shootings in 2025. I had every intention of going, but fate had other plans. I got home from a 9-hour work shift, had a quick bite to eat and headed back to my car. To my surprise, the garage door would not go up and let me out! I was stuck at home. So, I prayed Compline on my own, as I do every evening. I hope that the neighborhood heart the bells and wondered who they were run 292 times. Did they hear, or was it just more background noise to our busy world? I don’t know.

There have been many tears this week, Ravi. I have not felt so raw since the month that you left us. There are 2 new angels in heaven, and I know that you have made them feel welcome. I also know that the only thing in the world that their grieving parents want is to have them safely back in their arms. All bereaved parents desire this. It is the thing that we want most, and this wish will not be granted until we have all passed away. From dust we are made and to dust we shall return.

I miss you more than words can say. So many people have reached out to me at the start of school, sharing favorite memories of you. I see the yellow busses going down the block and remember how much you loved to ride the bus. It is a very bittersweet feeling. I am running a memorial race for you this Sunday, September 7. The race is called Finish the Run, and the logo is to Run with Intention. Ravi, I will always love you and I will always run for you. For me, running is the highest form of prayer. Be safe dear one dear. I see you in the cardinals and the monarch butterflies. Love you to the moon and back, Mom.

Good morning, Ravi

Dear Ravi,

I woke up missing you today. This is nothing unusual. You and your sibling are the first thing I think of when I wake up and the last thing I think of when I fall asleep. Ravi, you often come to me in my dreams, but your sibling, Mercury, is much more elusive.

It is a quiet Sunday. Daddy is off at the airfield with a friend. I am slowly taking care of the pets and cleaning the house. I did not make it to church this morning as today is one of those days when it is challenging to even leave the house. I will walk the dogs, but I am not feeling up to engaging with the world at large. I continue to like my new job, but by the end of a 9-hour shift, I am tired. It feels good to work for someone who uses AAC and has similar social justice views that your daddy and I have.

I saw a tattoo today that horrified me. It was a heart, made out of the autism puzzle piece. In the middle of it, the tattoo read, ” I am his voice, he is my heart.” Ravi, you have your own voice, loud and clear. You could say so much by using Sam, through a roll of your eyes, a gesture, your body language. I am your mom, your biggest fan and advocate, but I am not your voice. God gave you a voice, my son, and mouth words are not superior to other types of communication. I am certain that the wearer of this tattoo means no harm, but it seems to me that she is claiming ownership of her child. I did not own you, Ravi. I was deeply blessed by you, I adore you, but I never once owned you. You are your own person, always were, always will be. One should be careful what one gets as a tattoo, because once one gets it, it is there for life. Currently, I have tattoos for you and Mercury. I am proud of them. It generally takes me about 10 years to come up with the perfect tattoo design. At some point, I will get another tattoo for you. It might be your name or your initials. It might be a cardinal. It might be something completely different. Time will tell. I do know that I will have it put on my right leg so I can always take you running and walking with me. I am running and walking here on earth for you, and I can only assume that you are your usual peripatetic self in heaven!

The dogs are schooling around my legs like a hungry sharks having a feeding frenzy. They are ready for me to stop blogging and take them for a walk. The temps are lovely and cool today with a gentle breeze. Perfect weather for dog walking and working in the yard. I know that you are dancing in heaven, but the selfish part of me wants you here, safe and whole and healthy. I miss you, son. The first anniversary of your passing is fast approaching, and I am seeking a way to celebrate your life. I invite you to visit me in a dream and drop some good ideas. Love you forever, Mom.

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.