Tag: life

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.

Moving Parts, lots of them

Dear Ravi,

Yesterday, after church I checked in with you in the chapel. When we spoke last week, I told you I was very worried about Mercury and the decisions that they were making. I asked if you to keep an eye on them and guide them as possible. At the time, I believed that they were still in Stillwater, OK. I left the chapel, and things began to happen super-fast.

Daddy was talking to his dad, your Grandpa Bob the next night. Turns out, he knew that Mercury and their partner had moved to the Twin Cities. He said he had commissioned them to do some art for a book, that he had their address but would not give it to us. He also said that they seemed very restricted and lacking a general purpose. We thanked him for the information and did not push him for more. Through other back channels we found out that they and Eli were staying with my sister, but after 2 weeks were asked to leave. If they treated her house like they treated our (in other words, as their own B and B) I can’t say that I blame her. So, to the best of my knowledge, Ravi, your nonbinary offspring has dropped out of school, lost their job, returned to the metro area and is homeless and couch surfing. We suspect that they are in an abusive situation. In no way, shape or form is Eli ever coming back in our house. Mercury is welcome, but we have a lot of work to do as a family. I will extend them grace, but I do not trust them at all. I feel that they need a lot of intense therapy as an individual, and with me and your daddy, to work out all of their feelings and get their life back on track. This is not something that I can cause to happen. Mercury has to make the first move, and that is often the scariest one.

I had the oddest series of dreams last night. In the first one you and I were laughing, and you were eating your favorite dill pickle flavored popcorn. This was lovely. We were both so happy. The scene changed and I dreamed Eli had gotten Mercury hooked on meth and all their teeth had fallen out. The scene shifted again, and I was at an Osteosarcoma Special Olympics. Many young children were there; their ports were accessed to get chemo. Some were missing arms and legs and hope. Someone was trying to get them to exercise. I screamed and ran. The final dream was in a public bathroom. A random woman walked up to me and said, “Mercury has to make their own decisions”. Then she walked away. I woke up in a cold sweat.

I loved the part of the dream where you and I were laughing together. The parts about Mercury losing their teeth and the Osteosarcoma Special Olympics were terrifying. I absolutely trust the random lady in the public bathroom saying that Mercury has to make their own decisions. This lady was absolutely correct. Mercury is an adult and has to choose what type of life they want to lead. In order to really lead a true and fulfilling life, they have to break away from Eli. I can’t hurry this along, but I can pray fervently for their safety. Ravi, I believe that you know and understand what is going on. I thank you for listening and caring. I feel that things are starting to shift. They may shift rapidly, or this may take more time. In the interim, your daddy and I have our own lives to lead. There is work to be done, blogs and books to write, trips to be taken. It still is strange having an empty nest, but I am learning to lean into this strangeness. You are never far from us. You are just slightly out of sight, out of earshot.

Ravi, my love, I hope you are dancing in heaven and eating all your favorite foods. I wish you an eternity of joyfulness. I miss you. You are the first person I think of when I wake up and the last person I think of when I close my eyes. Fly free my dear Boo Bear, and we will chat again soon. All my love, Mom.

Ravi Announces Himself

Dear Ravi,

Do you know that today is the 24th anniversary of you announcing your presence? It was one of the strangest days of my life, but leave it to you to throw in some drama and flair. It was November 13, 2001 and I had an early morning teacher meeting. I went upstairs to my study to pick up some notes and I remember standing at the top of the stairs. I remember my vision coning in and feeling odd. The next thing I knew I was at the bottom of the stairs, in a pile of papers, with a concerned Daddy peering at me. I crawled back into bed and lay there a few minutes. I knew that I had broken some ribs because I could feel them grinding against each other. We decided that the best option was to go to the Emergency Room.

It was still early in the morning and not many people were in the ER. We got seen by a rather bored nurse. She asked it there was any chance that I could be pregnant. I said yes, and I hoped so. She took some blood and vanished. We sat there for 2 hours, no one checking on us. Eventually, the same nurse reappered and handed me my clothes. “You can go now” she said. “What?” I said. “What about my rib?”. She assured us that there was nothing that she could do about the ribs. I asked her, “Can you at least tell me if I am pregnant”. “”Oh honey, you are definitely pregnant”. Then she vanished. Poof. Shaking our heads I put my clothes back on and limped out the door, utterly confused.

We went home. I was thrilled to be pregnant, but confused about the rest. Later I got a call from United Hospital to come in to see an OB/GYN. I showed up for the appointment and went in alone. She was very cold. She agreed that I was pregnant and said, “You probably killed the baby by falling on him, come back in 3 months for a follow up.” I left the exam room in tears, vowing to find a better provider. Daddy was horrified. I went home and called my regular GP for an appointment the next day. On Wednesday, I went in to see her. She was disgusted by the way that United had treated me and vowed to find me good help, if I could just sit tight and wait. I agreed. An hour later she came back. She had found me an OB/GYN clinic in my network who would see me the very next day. I thanked her profusely. The next day I went to the new clinic. The kind doctor assured me that I was pregnant and that you had a strong heartbeat. I had never heard such a beautiful sound in my entire life. Ravi, you were alive and kicking. I was so proud of you. I was given a thick booklet on what to expect for the rest of my pregnancy, how to make follow up appointments every 4 weeks, and who to call if I thought anything was awry. They could not give me any painkillers for my ribs, but I did not care. I was pregnant! I returned home joyfully and decided to avoid the stairs for a while

Ravi, most women miss their period and pee on a pregnancy stick to find out if they are expecting. My period was never in the least reliable and I had to faint and fall down a flight of stairs to realize that something was up. You always did have a flair for the dramatic! The rest of the pregnancy was textbook simple, until 34 weeks when you decided to announce your early arrival. Once again, you did not refer to a calendar or anyone’s plans, you just came, but that is a blog for another day.

Last night, Daddy and I went to a state park to see the aurora. The Northern Lights were dim, but we saw them! I have been waiting almost 55 years to see them. There were also some beautiful clear stars, a herd of startled deer, and lots of coyotes singing the song of their people. I imagined you dancing in the stars and the aurora, free from your earthly bonds and this made me very happy. My dear, you are dancing with the starts with your Creator. You are free from all pain, fear, cancer, epilepsy. 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.

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.

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.