Tag: writing

December 9, 2022

Dear Ravi,

I hope you do not remember this date, though it is thoroughly etched in my mind. It was the second week in Advent. The night before I was getting you ready to bed. Daddy and I noticed an odd lump on your left arm. We wondered it it was trauma from the seizure you had had the night before. I took you into the pediatrician the next morning. She too,was puzzled, but ran an X ray. She could not tell what it was, but said she would send the pictures to the University. I had meant to drop you off at school, but you did not seem to be feeling so well, so we headed home. You spent most of the day chatting with Sam and lounging with me. Hours passed. It was late on a Friday afternoon and I was not expecting the hear anything from the clinic until Monday. I went to take the trash out. As I was outside my phone rang. It was your pediatrician. She asked if I were home. I said that I was. Her next words took my breath away; she said that you had cancer. I dropped the bag of garbage at my feet and just tried to breathe. The world seemed to have tilted on its axis. I put the garbage in the can and headed into the house. She suggested that Daddy and I take you to the ER for some scans. She recommended Children’s Masonic Hospital on Riverside. She talked softly to me but her words did not make any sense. I went inside, gave you a hug and called Alissa and Daddy. She came over immediately. Daddy came soon after. We felt as if we had dropped into the Twilight Zone.

We did take you to the ER that night. The doctor confirmed that you indeed had cancer, but did not know what kind, but would be putting in orders that night. That weekend passed in a blur. I sent you to school on Monday because we had not heard anything. Tuesday afternoon my phone started ringing and things happened very quickly. Within 48 hours we met your oncologist Dr. Greengard and the your team. A biopsy was scheduled for later that week. Chemo was scheduled to begin December 26. Thus began our 22 month journey into osteosarcoma.

My love, I hope you do not remember December 9. We will never forget it. I want you to know how incredibly strong and brave you were throughout the next 22 months. You never felt sorry for yourself. You never stopped fighting. I know you are in heaven with both Dave Coyne and Dave Evans, but Advent and Christmas will never be the same. It is cold today and about to snow. I am about to leave for work. I just wanted to drop you a note. Love you to the moon and back. Mom.

Just Checking In

Dear Rav,

Welcome to Advent, the Liturgical New Year! We missed church last Sunday as we were coming back from our Thanksgiving trip to the farm, but I am an acolyte at the festival of lessons and carols tomorrow afternoon. I have not been an acolyte in over 30 years, but Deacon George told me to come 45 minutes early and she could get me all ready. It will be a beautiful service.

The trip to see the Agan family and the farm was a wonderful reset and respite. We took long walks in the woods, ate tasty food, played games, counted cows, and met an hour old baby calf! That baby boy took one look at us and bolted! I had no idea that a one-hour old baby could run that fast. Mama cow looked just fine and was not worried about us. She was happily grazing and chewing her cud. She would make lowing noises at her calf, and he would bawl back. All the other mama cows and their babies would join in, and it was sheer, joyful, pandemonium. I can understand how Etta came to her love of cows and other large animals. She is one of the top equine reproductive veterinarians in the world, but her happy place is at home on the farm where she grew up.

We have snow on the ground now and the two baby trees that we planted for you have shed all their leaves and berries. I still have the rabbit bumpers up around their trunks to deter any hungry critters. I am determined that these trees will grow and flourish in the spring. The dogs and cat are not huge fans of the cold. They zip into the backyard and then come flying right back inside. Nikki, the cat, has not charged the back door in weeks. He hates getting his paws cold and wet.

I started PT for my back yesterday and am hopeful that it will help. My spinal fusion which I had done in 2019 is fine, but the spine above C4 and below C7 are starting to deteriorate. Eventually, I will need another surgery, but we are trying to kick that particular can down the road as far as we can. Right now, I am trying PT and muscle relaxants. I may also try injections, massage and acupuncture. I told my PT that my goal was to gain strength and energy, increase range of motion, be free of pain and resume running. She agreed that these were good goals. I am happy to be working with her twice a week for the month of December, or maybe longer. I will check back in the with neurosurgeon in 6 weeks to see how things are doing.

Boo, this time of year seems so empty without you and Mercury. We will celebrate Advent and Christmas by going to church but are not doing anything special otherwise. I trust that you and those that we love and miss are having a joyous celebration in heaven. Please look down on your Uncle Rob and Mercury with grace and pity. They need a lot of help and love. It feels good to be back home and talking to you. I am grateful that Roberta stopped by the chapel on Wednesday night to talk to you. She says that you are a very good listener. I will be at the church most of the day tomorrow and will touch base then. I am doing some autism advocacy today. I know you are flying free, but, oh my love, I miss you. Love you to the moon and back. Mom.

Health Insurance?

Dear Ravi,

I am on hold with MNsure. I have been on hold for 45 minutes. I applied for health insurance last week. Today I received a letter saying that my application was denied as I am deceased and already have different insurance. Pardon my language, but WTF? How can I be both dead and have other health insurance? This makes no sense at all. I have spent hours upon hours on hold with different health insurance agencies over the last 2 weeks, trying to prove that I will need health care in January, that I am not dead, and I have, in fact, paid the bills for my cobra on time and they can’t just take my insurance away. This is crazy. Are things less nuts in heaven, because things are bat guano crazy down here, and don’t even get me talking about all the trash coming out of Washington DC.

I do have good news. I start a new caretaking position tomorrow for a very nice lady. She is neuro spicy, like us, and seems like a lot of fun to be around. I will help keep her organized, help her with chores, and drive her to medical appointments. Thankfully, this job does not involve any heavy lifting. My back is still very grumpy, and it is another 16 days until I see the neurosurgeon who will hopefully take me seriously. I have not run in weeks, but I am walking the dogs and your dad, getting in about 35 miles per week. Like you, I was never very good at sitting still. To be happy, I have to have fresh air and movement in my day, and meaningful work. For me, caretaking is very meaningful work. I loved caring for you, and others as well.

Update Ravi, I got through to MNSure and they said that no, I am not dead, but I need to call Ramsey County. Of course, they are experiencing a high volume of calls so I am back on hold and writing to you. I wish I had something cheerier to write you about than the state of US health care. Thank God for Minnesota Assistance, or MA, which is what you had. Because of our wonderful state and governor, we never paid a dime for your 22 months of care. Cancer care often can bankrupt people. It is so wrong, and so cruel. We are also blessed with an outstanding social worker who dealt with the insurance company while your daddy and I cared for you.

Success! Ravi, I finally got a live person at the Ramsey County number. I told her I was very much alive and that I would not have any other insurance after the end of this year. She was really nice, and we both had a good laugh. I hope I am done with phone calls and dealing with people today. I just want to hang out with your daddy and our pets. Thank you, my love, for listening. Please keep an eye out for Mercury, they are in a really bad position. I love you to the moon and back. Mom.

All There Is

Dear Ravi,

Our good friend Roberta came over last night with the candle she lit for you in Durham Cathedral, while on her trip to England and Scotland. Apparently, you have been quite the traveler! She lit the candle for you in Durham and said prayers for you. When the candle had burned down, she scooped it up and put it in her coat pocket. You went on wonderful walks all over England and Scotland. You had the best tour guide ever! It probably is a lot cooler there than when you were hanging out with Alissa in Hawaii, but you had a nice warm pocket to ride around in.

After Robert left, I got out your cardinal candle holder that Laurie gave me. I put your candle and a fresh one inside and lit the flame. For a while, I just held space for you. Later, I began listing to an Anderson Cooper podcast called All There Is that had been recommended to me. I generally do not like podcasts as I prefer to get my information via reading plain text. This, however, was different. Anderson Cooper is easy to listen to. He interviews various people on grief as he tries to figure out his own losses and his place in the world. Two of the people he interviewed were President Joe Biden and Stephen Colbert. I was very eager to hear their particular takes on grief. Grief is savage and feral but cannot be denied. Colbert sees it as a tiger. He did not want a tiger, but the tiger chose him. Grief/Tigers can do extraordinary amounts of damage, but “Damn it, it’s my tiger.” Grief cannot be stuffed away, but must be lived with, shared, talked about and walked beside. I will definitely listen to this podcast again, and other ones in the series. It is my way of making space for both you and for my grief of you. Eventually, the candle burned down, and I was just left with my memories. I remember the good times and the hard times. I remember how incredibly brave and strong you were. I remember the day you flew free. If I could go back in time with you, I would choose the year you were 19. Your seizures were under control. Cancer was nowhere on our radar. You had Sam and you were learning to truly communicate. Even though parts of that time were during Covid, you were surrounded by family and friends that loved you and wanted only the best for you. I hold onto that particular time frame in my mind. You were so alive, well, thriving. I felt that there was nothing that you could not do. You voted in a democratic president and we both whooped for joy when he won. All was good.

This Sunday is All Saints Day. We will have a requiem service at church that afternoon. Beautiful music will be played and memories shared. The pictures of all the saints who have passed on from St Clement’s will be hung on the walls. It may seem odd to be looking forward to such a somber service, but I truly am eagerly anticipating you. Ravi, you were so loved, and your memory lives on strong. As long as I draw breath, you will live in my heart forever. I rejoice in the thought of you tramping all over Scotland with Roberta. You always were peripatetic, not one to stay home. I sense you most when I am outside, when the sun dapples through the trees, when I certain chords on the church organ that reverberate through me. Fly free my son. Fly free and experience joy. I am cheering you on, for every and always.

Love,
Mom

12 months

Dear Ravi,

“My words fly up, my thoughts remain below. Words without thoughts to heaven ne’er shall go.” Macbeth. I have no idea what to write, so I will invite the Holy to prompt me.

Ravi, it has been a beautiful yet heartbreaking weekend. I have felt your presence in all who have reached out to us. The people who sent cards or gifts, those who prayed for you and lit candles. Those who offered the altar flowers in your memory. My son, you have not been forgotten, and we are not alone. But, in the midst of this beauty, I am heartbroken. I miss you. I miss your infectious grin and your inane cackle when you found something to be particularly funny or absurd. I miss your hand in mine. I miss talking to you with Sam. I miss our treks to Taco Bell and Target. I have been able to get carry out at Taco Bell, but I have not been able to return to Target. That was the last outing that we took with you. You were so weak. We put you in your wheelchair and pushed you to the car. We drove you to Target and I ran inside to get a Caroline Cart. You loved those carts. We spent half an hour just roaming up and down the aisles, like we always did. This made you happy. That was the last time you left the house.

As I mentioned in an earlier epistle, your daddy and I have purchased two trees to plant in your honor. They arrive tomorrow and will make their new home in our backyard. One is a north star cherry. The other is a prairie fire crabapple. They will provide shade to the house and solace to our hearts.

After church today your daddy and I went to visit you in the chapel. Daddy said he could imagine your atoms and molecules running all over the universe. I reminded him that energy is neither created nor destroyed. You have simply moved on to a different form that we cannot see. On the day of your burial, Joy reminded us that Ravi is not here. No, you are not there in that chapel, even if that is where I continually return to visit you. You are running wild and free in the universe. Nothing can slow you down or harm you. Cancer, epilepsy, fear pain, are gone. You, my love, are free.

To all who are reading this blog, I thank you from the bottom of my heart for reaching out this weekend. We can feel your love. I wish I could spread this love to all the corners of the earth and truly bring forth the Kingdom of God. It is a blustery day outside, but I have a happy cat purring at my feet. The dogs are romping around in the wind, except for Raya who is snuggled up with Robert. And all will be well, and all manner of things will be well. Be good humans. Ravi, I love you forever and always. Mom.

The Cardinal From Ukraine

Dear Ravi,

We have a bit of a mystery on our hands. As you know, on Saturday your daddy and I picked out two trees for you, and I planted lots of crocus bulbs to come up next spring. The mystery came in the mail. It was a beautiful cardinal sun catcher made by an artist in Ukraine. There was a little note from the artist, but no sign of who had ordered the cardinal. I asked your cousin Paul, and he said that it was not him. I put out a query on social media, and while lots of people said that this was a very nice gesture, no one owned up to it. Daddy and I are delighted with the sun catcher but would love to know who sent it so we can send them a thank you card. Puzzling. I am certain that the sun catcher was sent to commemorate the first anniversary of your passing. Anyway, the happily little cardinal is perched on my window beneath my reading chair and seems to feel right at home.

Today was a fairly typical Monday, except for one aspect. I got up early, walked Raya, ran Jack Jack and Gloria, and took a walk with your dad. We met with John and Jenn, our osteosarcoma peers, and later I met with Kathy. The only thing different about today is I finally submitted my author bio to Abbey, my editor! I had gotten completely stuck on writing a query to publishers and the bio. Writing a query is basically trying to sell yourself, something that makes me very uncomfortable. Anyway, I sent that in a week or so ago, Abbey made some changes and copy edited it and now it looks pretty good! An author bio should only be about 100 words. It gives a brief description of the writer, in the 3rd person, and is supposed to pique the curiosity of the reader. I sent this to Abbey a couple of hours ago. To the best of my knowledge, your book is done! Congratulations, Ravi! The next job is to find a publisher who is interested in taking my project on.

So, my son, the week of the anniversary of your passing is here. We have been dreading it. I vacillate between feeling okay, to feeling numb, to not being okay at all. I guess this is all parr for the course. On Friday I am going for a walk with Pamela. On Saturday, we want to spend time with Dan and Robin, possibly cooking and watching a favorite show on Netflix. They were the first to arrive on the morning after you passed and stayed by our side during that long, terrible day. On Sunday I will teach Sunday School to 6 very energetic little girls. The flowers on the altar are being given in memory of you. Afterwards, I will go down to the chapel to see you. On Monday, your trees will arrive and be planted. Ravi, I miss you more than words can say, but I know you are flying free and strong. I hope cardinals will come to our trees and eat all the berries. I hope you are happy. I wish I could hug you just one more time. Love you forever, Mom.

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.

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.

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.