Tag: life

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.

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.

Mother’s Day, 7 months, plants, and stuff

I have been dreading today for weeks. I did not know how to get through Mother’s Day when I don’t feel like a mom. I didn’t know how to function when it has been exactly 7 months since Ravi took his last breath. So, I laid a game plan. I would attend the Adult Forum and 10:30 service with a dear friend. Afterwards, I would go downstairs to the chapel/ columbarium and spend as much time as I needed with Ravi. Then, I would go buy flowers and plant them in the back yard. The day went as planned, with a few miracles thrown in for good measure.

I went to adult forum with my friend. At the end of it, a woman from the vestry approached me. I had never talked to her before. “You are Ravi’s mom, aren’t you?” How had she known that I was praying that someone would just say his name? Turns out, she is the aunt of one of the young men on Ravi’s Special Olympic team, The Saint Paul Magic. We exchanged pleasantries and moved on to church. Once in the church, an astounding wave of grief hit me. I silently sobbed through most of the service. It was a lovely service, but I was completely flooded by grief. My friend just held my hand. After the service I went downstairs to the chapel/columbarium. I pulled a chair as close as I could to Ravi’s niche and just sobbed. I have no idea how long I sat there. Eventually, I gained a bit of composure and staggered out into the sunlight.

On returning home, I checked my phone. The first two texts were from the two people who have always stood by us, my sister-in-law, Cindy, and my cousin Paul. These two reached out every day during Ravi’s illness and every day since then. They are very dear to my heart. There were also texts and emails from friends, teachers at Ravi’s school, and other bereaved moms. I took a while to sit with this, then Robert and I went to Menards. We slowly wandered the garden section, and I picked out flowers and herbs that called to me. Once home, I spent several glorious hours digging in the dirt, planting and watering. Getting dirt on my hands and under my nails was good therapy. Later, we got Greek takeout.

So, this was the day that I had dreaded. I will be honest, parts of it were brutally hard. Other parts, goodness and mercy flowed into me. I want to thank everyone who said Ravi’s name to me, to everyone who reached out with pictures or spoke of sweet memories. I am proud to call you friends. I am wrapping up today by writing and listening to Glenn Gould play Bach. Music speaks to my soul. Gardening feeds my soul. My friends prop me up when I feel that I can no longer stand. I thank all of you. Be good humans. Say Ravi’s name and smile. Peace, Harriet.

Dear Ravi

My dear son, I have been silent these last few weeks as my laptop was in the shop, and I can’t compose anything of note on my phone. I am happy to have my computer back. I was mostly silent during April, which is Autism Awareness Month. It was the good, the bad, the ugly, and the absurd. I will spare you most of the details. I want you to know that RFK is wrong with a capital W. He said you would never write a poem. Ravi, your entire life and the way you lived it was a poem. He said you would never go on a date or have friends. Ravi, you had a bevy of female friends who loved to scoop you up and go have fun with you. These friends love and miss you. I will spare you the rest of the garbage that this man spews because you know, and I know, that whatever he has to say is complete rubbish.

Ravi, your life was a song, and I loved the way that you sang it. I treasure every moment that your father and I were able to spend with you. I just wish there were more moments. Your father recently drove to MS to pick up a glider from his dad. To the relief of many, at age almost 90, your grandfather finally hung up his wings. The glider that Dad now owns is a very perky shade of yellow. It is called a Duck Hawk, but I have dubbed it The Canary. Dad also brought back lots of pictures, both of you and Mercury, and many of family members I never had the chance to meet. I am not certain what to do with your baby and toddler pictures. They bring me such joy and such sorrow. I will hang some of them on the wall. I will put others into albums. For right now, I feel somewhat frozen, and they will just have to sit in a box on the dining room table. Ravi, you had the greatest smile.

I am dreading Mother’s Day. I have never had a Mother’s Day without you. I will go visit you in the chapel and then your dad and I will do something to honor you. If you have any way of getting in touch with Mercury, please tell them that they are loved and missed.

Right now, it is cold, grey day. I am snuggling with the animals. It should feel more like spring this weekend. I will plant some flowers in your memory. In the meantime, I love you. Fly high, sweet boy.

Six Months

My darling Boo Bear, it has been six months since you left us. Today is Friday, April 11. You left us on Friday, October 11. I go back in forth in my mind, was that the worst day of my life, or was the worst day of my life the day of your funeral? Maybe it is a tie. Your daddy and I will live with the memories of those two days forever.

I visit you every Sunday at church, but I know you spirit resides out in the wide world. You have started coming to me in dreams, and it is such a blessing! Friends from all over the country are texting me to tell me that they say you as a cardinal, or a beautiful monarch butterfly. Yesterday, I was walking at the nature preserve with a friend. A beautiful male cardinal flew out in front of us. He seemed very happy to be bopping about, taking little flights from tree to tree. This is the first cardinal I have seen since you passed, though others have seen them often. It was so good to see you!

Today is a tough day, but I am glad you are flying free, in a space where there is no pain or fear, cancer or epilepsy. Your soul has left your body. All that is left is memories, and sightings of cardinals and monarch butterflies. That will have to be enough.

I have submitted my book, Not Your Ordinary Autism Book, to Abbey, in hopes that she can find us a publishing company. She says this is her busy season, but she will keep in touch. I want your story to go out to the world, not just locked in the memories of those who loved you.

I have not been running at all since you passed. Your father and I have walked hundreds of miles; walking, meditating, looking at the sky for signs of you, grieving. I think I will go for a run either today or tomorrow. It may not be pretty but is has been such an essential part of my life since I was 13, that I think I should try it again. Even if it is only a mile or two or running/walking, that would be okay. I feel that I need to do this for you.

Today is a dark, overcast day, but the sun is predicted to come out later. I am going for a walk with a friend early this afternoon. We will look for signs of you. After that, I will try a brief run. Your daddy will be out at the glider field tomorrow, polishing the gliders and getting ready for the soaring season. This makes him happy, and me happy.

I don’t really know where this blog is going, Ravi, but know that I love you deeply and fiercely. I miss you more than words can express. Fly free, my love, and I will look for you in the cardinals and the butterflies.

When Boo Bear came back as a butterfly

Last weekend was magical. When Ravi was 4 and Mercury was 2 we had the most amazing person who lived with us for a year. Her name was Shirley and she had immigrated from China to get her Masters and PhD at the University of Minnesota. Her focus was autism and she wanted to live with an American family with an autistic child. She lived with us from 2006-2007 and was a huge part of Ravi’s life. A few weeks ago she found a $100 round trip ticket from Atlanta, near where she currently lives, to Minnesota. We both decided this was a sign that she needed to visit and she booked the ticket immediately.

Shirley was in town only 26 hours, but we made the most of them. We laughed, talked, cried, and shared our favorite memories of Boo. She was the first person I allowed in his bedroom, and I welcomed her to take anything of his that spoke to her. Early Sunday morning she was sitting in my reading chair, meditating and praying. Two things happened at once. She looked at the window, into a cold Minnesota morning and saw a big, beautiful butterfly. Her gaze then turned to a picture of Ravi on the refrigerator. She said that she heard his voice in her mind saying, “Shirley, I am happy”. A few hours later we went to church and were amused to find that we were both wearing Boo Bear socks. After the service we went down to the chapel to visit Ravi. We cried, we held each other, we mourned. It was very hard, but very cathartic. After, we picked up donuts and coffee and returned home to Robert.

Too soon, the visit had to end. We drove her to the airport and and , among tears and laughter, put her on her plane, heading home. As we were driving home, two things happened at once. I got a text from Peter saying that Ravi had been in his dream, and it was great to see him. Just then, a truck with the license plate “Boo” pulled in front of us. This had to be more than mere coincidence. An hour later I got an excited text from Alissa. She had been coaching her Special Olympic swim team in Hawaii. The entire time, a dragon fly was hovering over the pool. A dragon fly is a sign that the soul of her brother Jonathan is nearby. When she returned home, a beautiful orange monarch butterfly was waiting for her. She did not get a picture, but immediately alerted me.

All of the signs happened within a 5-hour period. I do not believe in coincidence, but I do believe in God, and I do believe in a life beyond the grave. Ravi appeared to two people as a butterfly, to Peter in his dream, and to Robert and me as a license plate. There is no doubt in my mind that my boy is footloose and fancy free in the world. He got to visit all of his favorite people in one day. We all could truly sense his presence

One final note. Ravi’s name has multiple meanings. In Russian, Ravi means Bear. In Sanskrit, it means sun. In French, is means to bring delight. Ravi is all of these things and more. Though we grieve him and miss him dearly, I know that he has shed his mortal, cancer ridden body and is flying free, immune to to the bonds of time and space. I am happy to share him with the world. I have submitted my final touches of my Not Your Ordinary Autism Book to my editor and showcased in a way, I hope, that I hope will draw in a publisher. I will keep you posted. In the interim, be good people and be on the lookout for signs and miracles. Peace, Harriet, Ravi’s mom.

Time Passes

Ravi, it has been nearly 4 months since we lost you. Time and space are funny things. Sometimes, I feel so close to you. Other times, all I can feel is grief. As a bus aid, I pass St. Clements Church twice a day. When the bus goes by, I give you a little wave, a thumbs up, and blow you a kiss. This is my twice a day ritual. Somehow, you keep me grounded as I head into the happy chaos of work. I feel your presence most strongly when I am on the playground at Bridge View School. Years ago, Principal Lisa and I poured concrete for a handicapped accessible playground. Since then, over a decade of students have enjoyed this play space. Like y0u, many of my students love to swing. Some can pump themselves into the air on their own. Others are happiest when I I push them high into the sky. It is then and there that I feel your presence. Often, while I am pushing a student, the sun peaks out from behind a cloud, and I know that you are saying hi.

The world is crazy right now. Basic human rights are being taken away. You would not understand this scary new world, and if you were here, I would do my best to shield you from it. You and I were so proud when you cast your vote for President Biden 4 years ago. We rejoiced when he won. Immediately after his administration ended, the world became a much darker place. The Medicaid that paid all your bills the last 22 months of your life is in danger of being taken away. The cancer research that prolonged your short life is frozen. I miss you deeply, but in a way, I am glad you are not part of this terrifying new world, but rather, hanging out with Jesus, and all those who have gone before.

Remember Mr. Rogers? His mother once told him that when things were scary to look for the helpers. There are helpers, Ravi. There are brave men, women, and transpeople who are standing up for what it is right and good. The Right Rev. Budde preached love and acceptance from the pulpit of the National Cathedral. She was the same person that offered the body of Matthew Shepherd sanctuary. There was no safe place for his body to rest until she had him interred at the Cathedral. I hope that you and Matthew and all the saints are dancing in heaven.

Boo Bear, I miss you more than mere words can express. Our house misses your energy. True, we have dogs and a cat and a hedgehog, but we miss your vibrant autistic energy. When I wake up in the morning, first thing, when I am in that state between dreams and reality, I believe, for a fleeting second that you are still here. Then, reality hits me like a freight train. Though life is hard and scary right now, I will continue to show up for you. Your daddy and I will be two of the helpers. Ravi, you were a good human. It is now the job of the rest of us to be good humans. I love you to the moon and back. Peace

Scan Anxiety

Scan anxiety is the extreme anxiety caused by an upcoming scan to see if chemotherapy, or radiation, or surgery, or all of the above is working. Ravi had a PET scan last week. Though I told him that we were going to go to the hospital to take pictures of his insides he remained mostly chill. Robert and I, on the other hand, were a hot mess. I spent many nights pacing the floors and praying fervently for good results.

Ravi has to be sedated for scans as he is wiggly kind of guy. This means, he has to fast before scans because one cannot eat before sedation. We were scheduled to check into the hospital at noon, the scan was at 2:30. This is a very long time for a hungry guy to go without food! On February 16, we let him sleep as late as he wanted. We got him up, dressed, and to the hospital. We had stuffed him with food the night before, so he did not appear to be that hungry. It had snowed 6 inches the night before and the roads were alternately slushy, icy, and impossible. We crept our way to Fairview Hospital going about 5 miles an hour. We checked in without incident but soon discovered that everyone was running late. We were left to wait in a huge waiting room where no one besides us was wearing a mask. Unlike the waiting room at Children’s where no one is allowed to eat, in case a hangry toddler grabs your snack, it seemed that everyone here was eating! We did our best to distract Ravi. Finally, we were called into a room. We met various nurses and doctors. Ravi was changed into a gown, and we waited some more. The PET scan machine is in the basement, which is always cold. We were worried about this as the last few scans he had, due to being cold, his brown fat lit up and obscured the necessary data. This time we had him swaddled in blankets, a special blanket called a Bair hugger blew warm air on him, and to top it off was his prayer blanket from our church knitting ministry. He was quite toasty! An hour before the scan he was injected with a dye that indicates where the tumors are. The dye has glucose in it, and cancer cells like glucose. The glucose will cause them to light up on the scan. The less lit up areas one has on a scan, the better.

The scan itself only took 15 minutes. Robert and I retreated to the waiting area and cooled our heels. Half an hour later we were called back to recovery. Ravi takes a long time to wake up from anesthesia, so we were there for another hour. Eventually, we got him up, dressed, and out the door. We returned home, with a stop by Wendy’s, ate dinner and collapsed. Through all of this, Ravi was a trooper.

Later that night I checked in on My Chart. The notes from the scan were there, but I could not make sense of all of them. It seemed that the fungal lesions were mostly resolved and that the lung nodules were smaller. I could not figure out the rest of the document. I spent a long night wondering, waiting and praying. At 8am sharp, I got a call from our marvelous oncology fellow who has worked closely with Ravi for 14 months. She said that the fungal lesions were mostly gone and that the nodules in the lungs were gone or diminished. The uptake of activity around the resected humerus was probably from the pressure sore that we have been battling for 2 months. She said it was hard to tell about the bony tumors as often then calcify and she was not sure how much of them were alive. In short, she was pleased. She said that she and Dr. Greengard wanted to loop in surgery, to take care of the lung nodules and radiation to get rid of the bony tumors. It is doubtful that the next few rounds of chemo will completely kill off these tumors, so they need more incentive to leave. Though Ravi still has a long journey ahead of him, she said that right now he is in a good place and the team is very please. I was literally limp with relief. My biggest fear was that the team was going to call, say that the chemo was not working, and they were giving up. I asked if this meant that Ravi could begin his 4th cycle of chemo on Monday and she said yes. I thanked her profusely, hung up and went to give Robert the good news. Per usual, Ravi was less interested in the results of his scan and more interested in breakfast, so I fed him and the pets and treated myself to a large latte.

Here are my take aways from the last week. Scan anxiety is very real. Adult waiting rooms outside of surgery are torture. The nurse said to me that if she ever won the lottery she would buy a PET scan machine for Children’s Hospital, so kids could stay in their familiar environment and not be in such a fast-paced environment where there is a crisis going on every other minute. I do not play the lottery, but if I ever come into several million dollars, I will happily buy Children’s Masonic Hospital a PET scan machine!

So, now what? Monday, we return to the clinic for chemo, or as I call it for Ravi, the strong medicine that will help your cells be healthy. Tuesday and Wednesday Ravi has PT, OT, and SLP. He loves these. Thursday, we have an appointment with the vascular doctor to look at his wound, which so far, is healing nicely. Then, we have follow -up labs with Dr. Greengard. On Friday, we collapse. This is a fairly typical week for us. We are at the hospital more days than we are not. Ravi takes all of this in good stride. He likes his care team. They like him. Having his port accessed and having labs drawn or fluids given does not faze him. As long as he has Sam, his AAC, his iPad, whom we call Sid, access to snacks and a comfy chair, he is a pretty chill dude.

Thank you so much to everyone who prayed, sent good vibes, or called to let us know they were thinking of us, it is very much appreciated. In Ravi’s journey, I really try to live in the moment and love him for exactly who he is and where he is at any given time. Scan weeks always throw me into a maelstrom of panic, and I am much less grounded. Currently, my feet are more firmly planted on the ground. Right now, Ravi is feeling good. He is eating well. His color is good, and he has some energy. On Monday, we will discuss next steps with his team. He still has a long journey ahead, but right now he is in a good place, and we are very happy. In the meantime, be good humans and we will be in touch. Peace, Harriet.