What binds us

Dear Ravi,

Do you remember how we always used to wear yellow on scan days for good luck? You would wear your Boston Marathon t shirt, and we would both wear our yellow No One Fights Alone bracelets. I ordered a dozen of those bracelets when you were first diagnosed. You and I always had one on, and we gave the rest of them to those that we love. When you passed, I slipped the bracelet off your wrist and sent it to Mercury. It was battered and worn, much like your body, but it was also a symbol of your resilience. For the last 3 years I have worn the yellow bracelet for you and a pride bracelet for Mercury. I have never taken them off, until last weekend.

Last weekend was the annual White Elephant Party. I have not attended a Christmas party in years, but it was a lot of fun. As I was preparing for the party, I realized that though I was dressed up, my Ravi and Mercury bracelets looked rather sad and worn. I slipped them off for the night and wore a dressy bracelet I have not put on in over three years. When I returned from the party, I slipped my old bracelets back on and felt like I was returning home.

Yesterday, I got together with Penny and Laurie to make bread. We had a lovely time. I realized that in order to work the dough, I would have to take off my watch, bracelets, and rings. I have not taken my wedding bands off in years. As I was slipping these things off, the yellow bracelet fell to pieces in my hand. I have worn it night and day for three years and I guess it finally gave up. For a moment I was very sad. I felt that I had lost you. I sat with that feeling and then carefully put the bracelet in my pocket. Ravi, I have not lost you. You are my constant memory. When you were in my womb, our cells intermixed. You became a part of me, and I became a part of you. We cannot be separated. The yellow bracelet was just an outer symbol of your strength and resilience. It has now crumbled into dust, but your memory lives strong. I put the pieces of the bracelet in my jewelry box where I can keep it safe. I don’t need a plastic bracelet to remind me of you; you are firmly in my heart.

Christmas is coming and it is a strange time of year. Your daddy and I are starting new traditions. I baked bread with dear friends. We will attend the Blue Christmas service and the help at the sensory friendly service on Christmas Eve. On Christmas Day, we will bring Dim Sum to Dan and Robin. I have no desire to put up a tree or to send cards. Our house is decorated with dog fur, not Christmas lights. In January, I plan to write lots of snail mail to dear friends, just to let them know how much we appreciate them. I have no season’s greetings to send, but I have a lot of love to share.

So, my love, though the bracelets that we wore together have crumbled into dust, my love for you will never fade. I carry you in my heart wherever I go. When I am doing something or going somewhere that I need to be brave, I wear a pair of your silly socks for courage. When I picked out a new pair of glasses last week, I chose blue frames because they reminded me of a pair of glasses that you once wore, and also the deep beautiful blue of your eyes. If there is an Advent or Christmas in heaven, I hope you are having the time of your life. Maybe every day in heaven is like Christmas, full of possibilities, like an unopened present. I miss you, Ravi. I love you. Please watch out for Mercury, I suspect that they are really struggling. Peace and joy. Mom.

The Frog In The Pot

Dear Ravi,

It is very cold outside, but I am wearing my fuzzy bathrobe and Gloria is sitting on my feet. Nikki went outside, decided that this was a bad idea and came rocketing back indoors. With windchills, the temperatures are supposed to be around minus 35 this weekend. I don’t really plan on going out.

I have had a very strange couple of weeks. Right before Thanksgiving I started a new caretaking job for a lady with multiple health problems. She needed someone to help her around her house, drive her to appointments, and organize her day. I had two interviews with her that went very well, and she offered me the job. The first few days went well. I drove her to doctor appointments and helped her clean her apartment. She was very complimentary of my work, and I felt we were a good fit. The job was 24 hours a week, 10 am to 4pm Monday through Thursday. I came back from Thanksgiving ready to work hard and that was when things started to get really weird. She kept wanting me to redo tasks that I had already completed. She would give me a list of things to do, and while I was doing them, completely change the list. She would “forget” to give me instructions and then claim that she had brain damage and could not be expected to remember everything. Nothing was good enough for her. She wanted at least 12 hours worth of work packed into a 6 hour work day. I began to feel like the frog in the pan of boiling water. Do you remember that story, Ravi? A frog was in a pot of water. He was happy and was able to live his life. Slowly, the heat of the water was turned up. The frog became uncomfortable. “This water is too hot!” he cried. The voice outside the pot told him that the water was just fine, and he was imagining things. The water began to boil. “Let me out!” begged the frog. “No”, said the voice, “You have to stay in the pot.” With the last of his energy the frog leaped out of the pot and hopped away.

Ravi, I felt like that frog. My employer tried to control every aspect of my life. She insisted that I work on her car, outside, in frigid temperatures. She said that the detergent that I used gave her a headache and I had to change detergents to a brand that she specified. Until I could to this, she insisted that I get my clothes damp and leave them outside over night to get rid of the smell. Though I did change detergents, I certainly did not leave me clothes out overnight. She continually lost my time sheets, and then got mad because I did not realize that she hid them in the Tupperware drawer. Honestly, Ravi, I am not making this up. The final straw came yesterday. She wanted me to come in an hour early. I arrived at 9am sharp, determined to have a good day. She had me work a 9 hour shift without any breaks, some of it outdoors. At the end of the day she did not want to sign my time sheets and said that my hours for yesterday had to go on a different time sheet for a different company. I then realized that she was using 3 different companies to log my hours. Things just did not add up. When I texted her at 6pm to say that I was logging out, she replied that I needed to wait, she might have “another plan”. I wanted 5 minutes, logged out and went home. Once I was home I had a long talk with Daddy and a good friend. They said either I needed to set really good boundaries with my employer or leave my position. I wrote a letter of grievance and resignation to the company who pays me, detailed everything that had happened and asked for advice on next steps. I do not want to work for her anymore. I do not want any contact with her. I want to get paid for the hours that I worked and move on with my life.

Ravi, I was tricked by this woman. She acted nice at first and I thought that she was a good person. I thought that if I just worked hard enough I would be able to please her. My friend pointed out to me that it sounds like she had deep rooted psychological issues. She may also have medical issues, but she is a master at gaslighting her employees. I remember after we asked Eli to move out, a good friend told me me, “Harriet, no more sad puppies.” What he meant was that I should not be taken in by people who supposedly had hard lives and then would take advantage of me. This woman was another Eli type who played on my desire to be helpful and be a change for good.

Anyway Ravi, that is the long story of my very weird 3 weeks. I am walking away. I can find a better employer who treats and pays me fairly and does not continually keep changing the rules and expectations of the job. Mommy may have felt like a frog in boiling water, but she used the last of her strength to jump out of the pan. My next step is to talk to HR and hopefully keep this woman from hiring anyone else.

I hope you are warm in heaven. It is frigid here, but I don’t have to work on a crazy lady’s car today without gloves. I don’t have to wash dishes and then be told that I washed them all wrong and to do it again. Who the heck washes dishes without soap, anyway? I am going to PT today to strengthen my back, play with the pets, walk on the treadmill and take lots of breaks. Your mommy may mean well, but she was not born yesterday. I am walking away from this job. All my love to you, my son, forever and ever. Mom.

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.

Autistic burnout/sensory overload

Dear Ravi,

It has been a heck of a week. Parts of it were really good, but parts of it were exhausting. I started my job and I love it. My client is bright, sweet, and we have the same offbeat sort of humor. I am working Monday through Thursday for her, about 25 hours a week. On Saturday, our Gather group had follow up interviews for the new position at church. Our group met from 8:30 to 12:30 Saturday morning. It was both exciting and exhausting. A final decision on the candidate will be made shortly. We had a wonderful Sunday school class yesterday. Could you hear us down the hall? We were making a joyful noise. Part way into the class, I was sitting on the floor with my kiddos. I stood up and my entire back went into spasms. It was hard to even take a breath. I have been having chronic back pain for the last month, but this took things to a whole new level. I moved onto a bench and spent time just trying to breathe. Luckily, none of the kiddos seemed to notice. Church followed class and it was amazing. I loved the music and Elizabeth’s sermon. I sat in the chancel with Roberta afterwards to listen to the organ postlude. I love a good postlude. Following this I went down to the chapel to just breathe, pray, and be with you. It is always good to be with you. Post church, Robert and I joined some dear friends for a late lunch and then I went home, took some meds for my back, and collapsed.

Ravi, this week took all of my spoons. It’s been a while since I have brushed up against autistic burnout and sensory overload. Let me describe how it feels for me, and I wonder if it felt this way for you. I am a cat packed into a human body. I like to bask in sunbeams. I like fidgets, toys, and small things that bring me pleasure. I like my meals to be consistent and in the same bowl every time. Noise, changes in my routine, random chaos are very upsetting and dysregulating to me. Imagine being an orange tabby cat. You are peacefully lying in a patch of sun and suddenly someone locks you in a room with a rambunctious toddler. The toddler pulls your ears and whiskers, pokes at your eyes, and chews on your tail. You like your fur to be flat, neat, and streamlined. The toddler has ruffled your fur backwards and now your tail is soggy. You are trying so hard not to use your teeth and claws, but it is a challenge. You scramble under the nearest piece of furniture and frantically try to smooth down you rumpled fur. You are shaking and scared. You can’t find your center. Ravi, this is what happens when my senses are flooded and I am going into burnout. The good news is that I know a lot more how to buffer myself than I did 10 years ago when I did not even know that I was autistic. I can usually gut it out until the end of the workday or the social scene and then fly home and hide under my favorite quilt. I only eat safe foods, and I work on rest and rehydration. I cuddle under a pile of pets and Nikki climbs on my chest, makes biscuits and purrs. Slowly, life comes back to center. Ravi, as you grew you got much better at self regulation. If something or someone made you uncomfortable, you just got up and walked out of the room. I always admired this quality in you. If you did not like someone or something, you just left. That is a huge asset and sign of growth, my love.

So, my son, this is a long-winded explanation of what it feels like to have my senses flooded. Did it feel this way for you? Was there anything I did that helped? Though I miss you desperately, I rejoice to know that you are in a place of perfect peace, and your nervous system is centered, calm, and happy. It is Thanksgiving week, and we are going off the grid for a bit, just for a sensory respite. We will look for cardinals. I will listen for the sound of your deep throaty chuckle, or your high-pitched cackle which emerged when you bumped up against something that was completely absurd. Daddy and I love you forever and always. Peace, 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.

Treating autism is not witchcraft

Dear Ravi,

Newsflash, treating autism is not witchcraft and your phone is always listening to you. Last night Daddy was editing my book. He had a question about Leucovorin and when it had been given to you during your chemo treatments. We both remembered it was a rescue drug but could not remember after which type of chemo it was given. Anyway, he went off to a concert, and I went to bed. I rolled out of bed around 4am as sleep was eluding me and you and Mercury were ever present in my mind. I grabbed my phone to check the temperature. Instead of telling me the forecast it switched to LinkedIn and showed me the key word Leucovorin. Hmmm, sus. Nevertheless, I clicked on the link and promptly fell down a rabbit hole.

Let me try to explain, Leucovorin, also known as folinic acid, is a form of folate, or Vitamin B9. It is used primarily to counteract the toxic effects of certain chemotherapy drugs, including Methotrexate. It is essential for DNA synthesis, red cell production and overall cellular function. Methotrexate can inhabit folate metabolism. Okay, so far this sounds correct, but what on earth is the tie-in to autism? It seems, that in very rare cases, some people are born with CFD, or cerebral folate deficiency. This can lead to autistic like behaviors. The FDA is now suggesting that Leucovorin can be used to help mitigate some autistic behaviors. Hmmm, once again, sus. Ravi, you were seen by some of the best specialists in the Midwest. You underwent scores of tests, blood draws, MRIs, PET scans, etc., both for your autism and your osteosarcoma. Never once did we hear of Leucovorin until your first round of methotrexate in December of 2022. Generally, the methotrexate was given over 4 hours. As soon as the IV bag was empty the nurses would run another IV bag of Leucovorin. Then they would begin massively pushing IVs of saline to push as many of the toxins out of your system as possible. You underwent the Methotrexate protocol from December 2022 until April 2023, when your kidneys quit and you gained 35 pounds in water weight overnight. It was a horrific experience. Never once did Leucovorin make you less autistic, more verbal, etc. Never once did anyone on your team say that the Leucovorin could help mitigate his autistic behaviors. Never once. Turns out that it wasn’t so great for counteracting Methotrexate either. That was your last dose of Methotrexate forever.

I dug further down this bizarre rabbit hole. Who was suggesting the use of Leucovorin in autism? At first blush, it appeared that this was coming from the FDA. That was strange, so I dug deeper. Who is controlling the FDA currently? Trump and Kennedy. Of course! The same monsters who told pregnant moms that taking Tylenol would cause their babies to become autistic. The same monster who suggested using Ivermectin and bleach to combat Covid. Now the pieces were coming together. It was all another gigantic hoax, led make desperate parents of newly diagnosed autistic children believe that they were at fault for their child’s neurological differences and that this would be the magic bullet. Just another hoax, just another heartache for any parent who fell for it.

Ravi, my love, you were perfect as you were. I wanted to make life easier for you, but I never wanted to take away your autism, because then you would not be Ravi anymore. If someone took away my autism, I would not be Harriet anymore. Autism is hardwired into us. It effects how we see the world and react to it. It allows us to feel both great joy and great sorrow. I have been autistic for nearly 55 years. If that were to be taken away from me, I would not know myself. Ravi, if someone were to take autism away from you, I don’t know that I would recognize you, and that makes me very sad.

So, my dear, treating autism is not witchcraft and our phones are always listening to us. Had it not been for Daddy’s question last night, I doubt that I would have gone down this very peculiar rabbit hole. Recently, I was at a disabilities conference called Closing the Gap. I met many likeminded moms and tons of teachers and SLPs. We talked about inclusion, AACs, modification of the environment, and so many other things. Not once did I hear anything about Leucovorin, and this was a conference that brought together some of the brightest minds from around the country. We were not discussing witchcraft or herbal remedies. We were talking about closing the gap between those with who are considered “normal” and those who have differing abilities. We were not talking about magic bullets or an instant cure. Since January 20, everything that has come out of the Oval Office is a hoax or a scam. The Oval Office is trying to run the FDA and the CDC. Many of the best doctors and researchers have resigned, rather than do something they view as unethical and harmful.

Ravi, I miss you more than words can express. I miss you sheer joy at life and your flappy hands. I miss your love for Carboni’s pizza. I miss your goofy grin and your deep belly laugh. I would not change you for the world, but I would take away the epilepsy and the cancer. Autism fads will come and go. This too shall slink into the dark abyss of time. Someday, hopefully soon, someone new, kind, thoughtful, and caring will enter the Oval Office, and the FDA and CDC can get back to doing their critical work. For now, we will speak out as best that we can for those whom we love. Forever and always, Mom.

All Souls Day

Dear Ravi,

We celebrated you and all the saints and souls who have gone before you at church on Sunday evening. Joy had hung up pictures of all our parishioners and loved ones around the walls of the church. Your picture was on the right hand side of the church, or the eagle side as we say in TEC, near where I always sit. You were a few people up from my dear friend from EFM, Mary Fred. She also was treated for cancer at Mayo, which prolonged her life by two years, and then slipped away from us in hospice during the Covid shutdown. I imagine you and she are having a marvelous time in heaven. She is an amazing mom and advocate, and just a lot of fun.

The opening hymn on Sunday was I Sing a Song of the Saints of God. This was also the processional at your funeral. It has always been one of my favorite hymns, but hearing it now brings me to my knees. All Saints Day and All Souls Day are such a thin place. The veil between the living and the dead is feather thin on those days and flutters, letting us have peeks at each other. In my heart of hearts, I know that you are just on the other side of the veil, waiting for Daddy and me. After the service he and I went down to the chapel to visit you. Joy had lit a candle as a memorial for a baby who was born sleeping. Can you and Mary Fred keep an eye out for the baby? She was loved and wanted but slipped away in the womb. St Clements is planting on oak tree on our parish green for mothers who have lost babies and babies who were born sleeping. They will rest safely in the arms of this tree, instead of the arms of their mothers who grieve them.

I was at the church on Monday as part of the Gather Group. We were interviewing candidates interested in leading our neurodiverse worship services and teaching other churches how to make the neurodiverse feel welcome and church settings. This is a 5-year project funded by the Lily Foundation. Before the interviews began I slipped into the church. All the pictures were still hanging on the walls, keeping watch. Gently, I took your picture down and slid it into my interview folder so you could be with me during the decision process. In each candidate we met I wondered if they would pass the Ravi test. This was the test I gave to all of your PCAs. If they came to the house trying to impress me but paid little attention to you, we immediately wrote them off. If they came in the house and you instantly took a shine to them, I knew that they were a good person and could be trusted. Ravi, you had an excellent sense of people and their vibrations, and you never once led me wrong. Some of these candidates I could see you taking an instant like to them. Several of them were autistic and I promptly felt comfortable with them. Others were well intentioned but did not seem to have the calling for this particular ministry. After nearly 5 hours of talking to people our panel of interviewers went home. We were all exhausted. Each candidate brought their own wave of nervous anticipation and anxiety into the room, and it was hard not to let it rub off on us. We reconvene this evening, talk to two more candidates and then will do some serious reflection over a meal. Candidates in whom we are interested will be called back for another interview and a chance to meet other members of the church, particularly the ones they will be serving. May God be with us as we discern who or whom will be taking on this new ministry.

Ravi, it is 5 am and I am writing to you. I never do seem able to keep normal work hours. I can wake up from a sound sleep with an idea in my head and I have to write to you to get it out. I have been talking to a few publishers for your book. I have decided not to go the route of self publishing. It seems to be a very expensive vanity project and not how I want to project your story. I am putting together a list of potential agents and submitting them to Abbey, our editor. This will be a long process but hopefully a fruitful one. If nothing else, we always have the blog and our band of faithful followers, for whom I am ever grateful.

It’s still dark outside, Ravi. I fed the animals and now they are asleep around me. When it gets light outside, I will take the dogs for a walk. Due to back problems, I am not running much these days, but the dogs and I get in at least 5 miles a day of walking. We had a good walk before the interview yesterday, as I knew that I had to get my wiggles out. Fortunately, if I have notes to take and a few good fidgets on hand, I can generally stay seated and focused. You would be proud of me; I even tried to sit like a neurotypical person! It was hard! Chairs are overrated, but interviewees get nervous if I start pacing the floor, which is my favorite way to think.

I miss our walks, Ravi. I miss your laugh and your smile. I knew that you are with Mary Fred and a host of other souls, just on the other side of the veil, but I still miss you. One day, we will all be together again. No cancer, no pain, no fear. Can you pray for your Uncle Rob? You and God know why. He is a very good human and much loved by his family. Go in peace Ravi, to love and serve the Lord. Love, Mom.