Farewell Floor 5

Dear Ravi,

Daddy was talking to a former employee on Floor 5 at Masonic Children’s Hospital. Do you remember the hospital, or was that part of your life blissfully erased from your memory? We spent weeks, sometimes months there. Floor 5 was the oncology floor. If one had to be in the hospital, it was not a bad place. The corridors were wide and airy. There was a playroom and an exercise room. Nurses, aids, doctors, and therapists were always popping in and out. We could keep the door open and hear all the chatter in the hallways. Your door was adorned with stickers by the nurses and had a large window in it. When you were feeling up to it, we could take you and your IV pole and walk laps. 6 laps around the ward made one mile. You were usually good for 1 or 2 laps, passing the nurses at their stations who cheered you on. There were daily visits from therapy dogs and a family room with snacks and a coffee maker. Now, do you remember Floor 4? I hope that you do not. I wish that I could erase it from my memory. Floor 4 was the isolation ward. One could not keep the door open without an alarm going off after 2 minutes. There was not a window in the door. It was like being placed in solitary, or on the dark side of the moon. We were cut off from everything. We were only on that floor a few times, until they could find us a room on Floor 5, where you belonged. One could not even keep food in the room on Floor 4 and there as no family room, no sense of community.

Anyway, on to the gossip. The employee I mentioned earlier said that 2 of your favorite nurses had retired after 35 years of service and that the oncology floor had been moved down to Floor 4. This move had been loudly protested by all the nurses, doctors, and aids on Floor 5. No one wanted to move, and their reasons to stay put were good. Easier patient access, a strong and thriving team, patients were much happier there. Sadly, their protests were ignored by administration and the move went forward. Many nurses and several doctors resigned and found jobs elsewhere. The comradery and never say never spirit of the floor was killed off in one fell swoop. Sweetheart, I am so glad this did not happen when we were at Masonic. I will never say that a hospital is autism or sensory friendly, but Floor 5 was as close as I have ever seen. Even though your visits stretched to over a month at times, you never seemed to mind being there. You liked the doctors and adored the nurses. Floor 4 was sheer misery. You are a social creature, even under the harshest of chemotherapies, and you loved your interactions with the nurses. Without a doubt, they were some of the finest nurses that I have ever seen. On Floor 4 nurses only came in to check on you every few hours and never stayed. On Floor 5 nurses and aids popped in and out all day, sometimes to check on you, other times just to visit. We had a keyboard in our room and I could practice piano. The familiar music soothed you and people passing in the hallway often paused to listen.

Ravi, do you remember Masonic? It was 22 months of your short life. We met nurses that I will always admire and pray for. I hope you remember their love for you. I hope that you do not remember the harsh chemotherapies, the kidney failure, the nausea and the pain. Let Mommy hold those memories for you. You can put them down. You are free from hospitals, disease and any pain. The comradery and spirit of Floor 5 will always remain in my memory. The nursing staff there was extraordinary. I feel terribly sorry for the children who are cancer patients there now, isolated on Floor 4.

Honey, it is 3:30 am and I have no idea why I am even awake. As always, my muse has her own clock, and she usually wakes up at times where I would rather be asleep. In 4.5 hours, I have to be back at the endodontist office with my silly tooth. I am taking Tylenol and Ibuprofen around the clock, but the tooth is still throbbing. If the infection does not clear up, I may have to go inpatient for IV antibiotics. I would greatly like to avoid this. Home is where my heart is, with the dogs, cat, and hedgehog. With Daddy, my books and journal and laptop. Does heaven keep time, or is always a bright, shiny new morning, brimming with possibility? I pray that your possibilities are endless and you are experiencing nothing but joy. I miss you and love you, Mom.

The Terrible Tooth, Part Two

Dear Ravi,

Yesterday was a long day. I spent 3 hours in a dentist’s chair. As you know, the root canal I had last week decided to kick off an infection. I am so glad that you never had to have a root canal. Obviously, it you had to have one, I would have it done under full sedation. Anyway, I staggered back into the endodontist office yesterday. A pair of wonderful dentists took all the packing out of the tooth, washed it down, packed the tooth with medicine and filled it back up again with a temporary crown. To say the least, it was not fun. I returned home with a mouth packed full of gauze and drooling enough to make any basset hound proud. It was not my finest moment. I was in bed by 8pm and slept over 13 hours.

It is a cool rainy day outside. No birds at the feeder yet, though we did have some customers yesterday. I am not planning to do much today. My pain level has dropped from an 8 out of 10 to about a 3 or a 4, which is a relief. I still have no interest in food. It is a good day just to stay home, read, and cuddle the pets. I have another appointment tomorrow at 8am to recheck the tooth. We have already cancelled our trip to Virginia. I really wanted to visit the Agans this week, but I am afraid that the tooth will flare up again. As I have state insurance, I cannot be seen by any provider who is outside of Minnesota. Being stuck in rural Virginia with an unhappy infected tooth does not seem like a wise idea. The dentist said he would write me a letter for the airline, hoping that we can exchange our tickets for the week of Thanksgiving.

Sweet boy, I am so glad that you had good teeth. Unlike Mercury, you did not need braces. With a few exceptions, your teeth were strong and healthy. You had excellent dental providers, and anything major was done at the hospital under general sedation. I never would have put you through any dental pain. You suffered enough with epilepsy and osteosarcoma. I wish you were with me to cuddle right now. We would hang out together under your fleece blanket and watch videos on Sam, or just chat. I miss those moments deeply. You often come to me in my dreams. You don’t have Sam with you, nor do you use mouth words, but you are always bright and happy. I don’t think that mouth words are needed in heaven. Do you remember how I used to play Pink Floyd for you when you were in my belly? And how I would play it for you when you were tiny and it always calmed you down? I wish you were here, but I know that you are someplace far better. Love you forever. Mom.

The Terrible Tooth

Dear Ravi,

Like you, mom does not like dental procedures. Autistic people find dentists terrifying. Dentists put their fingers in your mouth. The drills sound like fingernails on a chalkboard and feel about as bad. One is tipped into weird positions in the dental chair, and feels trapped. In short, not fun. A while ago, Mommy chipped a pre-molar tooth. I could not find any dental office that would take my state insurance. I finally happened upon the University of Minnesota School of Dentistry. I had an appointment last Wednesday. A very nice and gentle dental student named Jason discovered that I needed a root canal. I was very worried about that, but he told it that the procedure would not be that bad and he would use lots of anesthesia. Thursday afternoon I rolled in to have the root canal done. Besides having a dental dam and a bite block in my mouth for 2 hours, it was not terrible. I was discharged, told to take alternating Ibuprofen and Tylenol for pain and given an emergency number to call if things got worse. Jason said I was a great patient and that he would see my Monday afternoon for a cleaning.

As you know, last weekend was your second heavenly anniversary. I was not at all focused on my tooth. That night we had a lovely evening with Lauren, Andrew, and baby Cora. I was noticing a fair amount of pain. Going to the bathroom to look for painkillers, I glanced in the mirror and nearly jumped a foot in the air. I looked like a stroke victim. The left half of my face was swollen and frozen and my lip drooped down. I looked like Donald Trump. Eew! I showed myself to Daddy who agreed that things did not look good. I spent the night icing my jaw and taking pain relief. Nothing helped. I called the emergency dental number only to be told that it was out of order. Around 5am, wracked with pain, I called the nurse line. She was very nice but told me since I had been seen by dentist, she could not help me. She gave me another emergency number to call which did not work, either. I was beyond frustrated. At 8am I started calling the dental clinic. I kept being put on hold and after 15 minutes the call would roll over to voice mail, where I had already left 2 messages. Daddy suggested that we just walk in and say that I was having a dental emergency and see if they could help. I had a 1:15 pm appointment but knew I could not last that long. The pain was on a level only slightly below passing a kidney stone or giving birth.

We arrived at the clinic and ran into the most unhelpful desk attendant. She claimed that the emergency number was working just fine, I had a 1:15 pm appointment, she would leave a message for Jason, but that was all she would do. I was almost in tears. Daddy was as fed up as I was, and we walked down the street to the Emergency Room. Amazingly, it was mostly empty. I was taken in triage in less than 10 minutes. The nurse was very kind. I was not running a temperature, probably due to all the pain killers, but I was having chills. My vitals were stable. 10 minutes later we were seen by a young medical student. He was also very kind. He examined me, could see signs of infection, and offered some stronger pain killers. I accepted. At this point, my memories are very fragmented. I remember being on a bed and having an IV of narcotics and an antibiotic. Two hours later we were discharged. I was in little pain but very wobbly. From there, Daddy and I went to pick up my meds from the pharmacy, he grabbed a bite to eat, and we headed back to the dental clinic.

At the clinic, Nathan was very concerned. Even though all of his work had been overseen and approved by a senior dentist he felt terrible. He whisked us down a floor to endodontics and ran a scan. Looking at the scan was really interesting. I could see my teeth in 3 D. Under one pre- molar was a large dark shape. I asked Nathan and his attending what it was. They told me that the black area was all infection and that they were going to drain it. Ravi, even though I really dislike narcotics, I was happy to have them on board right then. I had absolutely no fear. It was great! They numbed me up, cut an incision in the gum and drained the canal. As the pus was draining, I felt almost instant relief. Whee! The two of them sent a very wobbly mama home with a number to the attending dentist’s direct line. She said to text her immediately if anything went wrong.

Ravi, it is now 3am on Wednesday and the pain is back. I am taking pain relief, but not narcotics because I hate feeling stupid, icing my jaw and writing to you. Sweet boy, I know how often dental pain is discounted in the autistic population because many of us, certainly including you, cannot explain where things hurt. We just know that something bad is going on. Also, often being people pleasers, we don’t want to raise a fuss. To all autistic people and their parents out there, please raise a fuss. Dental pain is no joke, and if your child is like Ravi or me, they may have a freaky high pain tolerance. I know that finding autism friendly dentistry can be really hard, but please try, for your own sake, or the sake of your child. Dental problems will not resolve on their own, they only get worse.

So, Ravi, here I sit at 3am. I have cat on my lap and dogs at my feet. I am icing my jaw. At 7am I will text the nice dentist who gave me her direct line and ask for help again. I just hope that this does not mess up our trip to Virginia on Saturday. Nathan thought that this would not be a problem, but this was on Monday when I was actually responding to pain killers. I hope that there are no dental emergencies in heaven, Ravi. I hope and trust that you will never be in pain again. I will keep you posted about what happens today. Love you forever, Mom.

A Heavenly Anniversary

Dear Ravi,

It is hard to believe that two years ago you left us. Our entire day, yesterday, was devoted to you. We went to church in the morning, where I had a made a memorial offering of altar flowers. They were beautiful. We sat with friends. Your name was mentioned during the prayers of the people. We tried to go downstairs to the columbarium, but someone was having a counseling session, and we did not want to interrupt them. Instead, we leaned against the outside wall and gave you our blessings. Outside, it was a beautiful, but unseasonably warm day. We decided to go to Gertens to look for a bird feeder. We found and a perfect feeder and also a small present for Penny. We took the long way home on River Road and past Bridge View and Focus Beyond, just to look at the beautiful foliage. It was stunning.

After a quick rest at home, we hung the feeder full of seed above the back patio. The seed we chose is supposed to be a favorite among cardinals. I have not seen any birds yet, despite my best efforts. Yes, your mom was in the back yard, calling, “Here birdy, birdy, birdy, free food!” I am certain that in due time our feathered friends will show up. The kitty is very excited. He never goes outside, but he sits on my reading chair and watches what is going on out of doors. I call it his kitty TV.

As a quiet nod to you, we ordered dinner from Carbone’s pizza. We got a full topping pizza and cheesy bread, your favorite. Lauren, Andrew, and baby Cora came over to share the feast. Having a busy, happy 14-month-old in the house was the best therapy ever! Cora is walking, babbling, using baby sign, and loves to read books. Your daddy and I immediately volunteered to baby sit her if Lauren and Andrew ever want a date without a toddler along. They accepted! The dogs were a bit surprised. They had no idea that humans came in such small sizes. Jack Jack and Raya were very good with Cora. Gloria had many opinions and had to be banished to a back room for the evening. Nikki put in a brief appearance but decided to keep his distance from the roving toddler. All in all, it was a lovely evening. It was a lovely day. We remembered you in church, got hugs from dear friends, received a multitude of texts and emails, and got to hang out with a toddler! They only thing we could have asked for, obviously, was to have you here with us, enjoying the festivities and a pizza dinner.

Ravi, you were such a wonderful part of our lives for 22 years, so vibrant and alive. Now, you are in heaven with your Uncle Rob and Eric. All of us who are left behind miss you deeply. I never want you to be in pain or fear. Cancer and epilepsy are no longer a part of your reality. Fear and pain are gone forever. I give thanks to God for your life every day. Love you to the moon and back. Mom.

Good Omens

Dear Ravi,

We are two days away from your 2nd anniversary in heaven, but you are popping up all over the place! As you know, our friend Eric died last week. Janet just sent me a video of a male cardinal at her feeder. I told her that you were checking in on her. I was talking to Elizabeth earlier this week about you and reminded her that you often show up as a cardinal. She had forgotten that. Two hours later she was on a zoom call on her back deck when 2 cardinals showed up in a nearby tree and started raising a ruckus. She said that she got goosebumps. I am convinced that you and cousin Joyce were right there. I told her that you only show up for people that you really like. Paul also saw you earlier this week at his feeder in Connecticut.

Today, we were shopping at Costco and I realized that they now have Caroline Carts available. I remembered how much you loved riding in those carts. The night before you passed, we took you to Target, put you in a Caroline Cart and pushed you around. As always, we ended up in the candy aisle. Even though you could no longer eat, we bought you every kind of candy that you might have liked. I cherish that memory. Later, still at Costco I found a 30 lb bag of bird seed with a Cardinal on the front. We promptly purchased it. On Sunday, after church we will go to Menards and buy a bird feeder for the front yard. I just hope that the birds get to it before the squirrels.

It’s been a brutal 2 weeks. We helped bury your uncle Rob and comfort Cindy and the boys. We returned home and less than a week late we lost Eric. His death was not at all expected. He was an amazing man and will be deeply missed. Your 2nd anniversary in heaven is in less than 48 hours. This is a lot to digest. I am happy that you are free of cancer, pain, and fear, but dear Lord, I miss you. On the 17th, we are flying to Virginia for 6 days as a respite. The plan is to go to the farm and go completely off the grid. At most, I will check my phone once a day. I promised Jenn pictures of cows. Chris will be looking after the critters here, and they adore him.

A while back Kathy told me that eventually your death will just be woven into the fabric of my life. Jenn and I both refute this idea. My life goes on, but there are 2 gaping holes in the fabric of my life, one for you and the other for Mercury. I can’t tie up these loose ends or make it pretty. I think at our next session I will tell Kathy that I greatly dislike her analogy. Your death was an out of place death in the rhythm of life. Children are supposed to outlive their parents, but yet, you went first. We will honor you with flowers and prayers at church on Sunday. We will visit you in the columbarium, though Daddy and I both have the distinct feeling that you are no longer there. You are flying free. We love you forever, Mom and Daddy.

Saints of God

Dear Ravi,

It is good to be back in Minnesota. As you know, we were in Indiana for a week, supporting your aunt Cindy after the death of her husband, your uncle Rob. The funeral was beautiful and tragic. Rob liked all the “smells and bells” of a high church, so the service included incense and bells. Father Allan gave the homily and Doug, Rob’s brother, gave a beautiful eulogy. The recessional was the same as the processional at your service, I Sing a Song of the Saints of God. It seemed very fitting. Cindy said that she chose that on purpose. It is an odd time that follows the funeral of a loved one. Everything slows down and nothing seems quite real. Fortunately, your aunt is surrounded by friends and her parish. Aside from filling out paperwork, there is nothing pressing for her to do. The funeral is over. Rob is buried. Time grinds slowly and grief beats a tattoo on the heart. Please welcome your Uncle Rob to the afterlife and pray for Cindy, Robbie, and Aaron.

I am grateful to start a new month. September was the month for awareness of childhood cancers. Though I will never stop advocating about autism or osteosarcoma, I am glad that we are entering October. Having cancer on my social media feed for a month was exhausting. Your two trees are doing well. I think it is time to harvest the crab apple tree. We are coming up on your second anniversary in heaven. I have ordered altar flowers in your memory for October 11. After church, we plan to buy a bird feeder for the front yard and fill it full of seeds that will hopefully, attract cardinals. Speaking of cardinals, I just got a sweet present from Jenn, my bereavement peer. She sent me a candle in your memory and a crocheted red cardinal. They are sitting on the dining room table. On the windowsill next to me are two tiny dragons. Rob loved dragons and had been creating and hand painting them since the age of 12. There were over 2,000 dragons of all sizes in his house. Family members each picked out a dragon that spoke to them. I chose 2 baby dragons that reminded me of you and Rob. The green one speaks to me of Rob, and the red one reminds me of you. The rest of the dragons were carefully boxed up and taken to the church. At the reception following the funeral, people were invited to take home a dragon that reminded them of Rob. Many of the dragons have now found new homes. It is a beautiful tribute to their creator. Rob will live on in the hearts of those who knew and loved him.

I miss you so much, Boo. I wish that you and Rob were here, healthy and happy. You are my first thought when I wake up and my last thoughts as I drift off to sleep. I continue to submit my manuscript to agents, but I have not gotten any bites yet. I will continue to advocate about autism and osteosarcoma. I will continue to tell your story. Love you forever, Mom.

The Algorithm

Dear Ravi,

Sometimes I really hate social media. As soon as you were diagnosed, my feed was flooded with cancer information, some of it useful, most of it laughably inaccurate. Newsflash: coconuts do not cure osteosarcoma. If a clinic does not accept any insurance, they are bogus. Your autism and your cancer were not caused by vaccinations.

In the 6 days following your Uncle Rob’s death, Facebook has inundated me with hospice and grief videos. Some are fitting, some are outrageous. I am still mad at social media for sending me hospice videos a year before we ever considered it for you. I guess they figured a kid with stage IV osteosarcoma could not last forever, so I should take this as an omen. Instead, I snoozed these videos for 30 days, again and again and we fought harder. Gradually, over the past 2 years these videos have thinned out a bit. I see more things that I like; such as Aussies being silly, cats being snarky, and goats doing yoga. You know, the things that bring a smile to my face. I am tempted to either throw my phone out the window or sage the living room. I did snooze St. Jude’s today because I think they are a cult. They may not charge a cent for treatment, but their hospital only has 70 beds available, they cherry pick who they will treat, and they will not let patients or parents seek a second opinion. These are all deal breakers for me. You got excellent care at Masonic Children’s and Mayo and I have no regrets. I also have a lifetime supply of return address stickers because a family member sent them a donation over 4 years ago and they refuse to leave me alone. My money will always go to The Osteosarcoma Institute. Period.

It is a rainy day today. Between showers, Daddy and I walked all 3 dogs. I am slightly damp right now, but happy. Your baby trees are rejoicing in the rain and looking very lush and green. I am going to do some writing this afternoon and some cleaning. I am fully acknowledging my grief for both you and Uncle Rob, but I also feel the need to be productive. I got a very sweet text from a friend last night. She had donated to OSI and on the 2nd anniversary of your death will light a Yartzheit candle in your memory. I am deeply touched.

We will leave for Indiana next Wednesday. Rob’s memorial service is next Saturday. We will remain in Clarksville a few days to give Cindy, Robbie, and Aaron our company and support. Tomorrow is our first day of Youth Formation at St. Clement’s and I am excited to be back in the classroom. I hope that you enjoy the noise and happiness emanating from our classroom down the hall to the chapel. Please give your Uncle Rob a huge hug from all of us. May light eternal shine upon you both. Love, Mom.

Good night, sweet prince

Dear Ravi,

At 8:21 this morning your Uncle Rob ascended into glory and joined you in heaven. “Good night, sweet prince. May flights of angels sing thee to thy rest.” He fought a long hard fight against cancer. I refuse to say that he lost that battle, but that medicine failed him. The tumors came fast and furious in the last 18 months, particularly in the past few weeks. When we saw him in August, he was in the hospital, but still sharp and working remotely. He was bright, engaging and interested in the world around him.

Do you remember the axolotl that sits on the back of our living room sofa? Your Uncle Rob sent that to you because he believed in the healing power of stuffed animals. One day, shortly after you were diagnosed, a small package showed up on our doorstep. It was addressed to you. We opened it the box up and a 3-foot-long axolotl sprang forth from the box. There was no note, nothing to explain where it came from. We were charmed but dumbfounded. I sent a picture to your Aunt Mags, a wildlife biologist, and she concurred that it was, indeed, and axolotl. I sent a picture to my cousin Paul, a veterinarian. We often send each other silly gifts. Nope, not him. Still completely perplexed, I put a picture of it on social media and asked if anyone knew where it came from. A bit later, your Aunt Cindy remarked that Rob had seen it online and thought it was cute. She had no idea that he was actually going to buy it! Mystery solved. The axolotl was promptly dubbed Rob and spent much of its time either lounging on the back of the sofa or on your bed. You loved it. After you passed, I worried that the stuffed Rob would become lonely, so he has inhabited the back of the sofa ever since. When I look at it, it never fails to bring a smile to my face.

Ravi, I want you to know this. Your Uncle Rob fought cancer with a tenacity that I have never seen before. Even in the last weeks of his life, he was still looking for another treatment or potential cure. He never gave up. He worked up until almost the very end. He leaves behind scores of bereaved people; his family, his friends, his coworkers and members of St. Albans. He will not be forgotten, he lives on in our hearts, just like you do. Please welcome him to heaven and give him a giant hug. We are traveling to Indiana early next week to comfort Cindy, Robbie, and Aaron. I believe that the funeral is next weekend. We will stay for a few days after that, just to lend support. The best things that our friends ever did for us after we lost you was just to show up. We were deep in mourning, but we never once felt alone. We want to give that support to Cindy.

It is a grey, blustery, windy day here which rather matches my mood. The day after you died was blue and beautiful. I could not comprehend how that sun continued to rise and set when you were no longer in our world. Today, it feels like heaven is crying, even though Rob is being greeted with a grand reception at the heavenly gates. My love, I miss you and I miss your Uncle Rob. Take care of each other. Until we meet again, love, Mom.

9/11/01

Dear Ravi,

You were but a twinkle in your Daddys’ eye when our world changed forever. Daddy and I had been married less than 5 weeks when planes crashed into the Twin Towers, the Pentagon, and a field in Pennsylvania. When we went to the airport to meet our wedding guests in early August, we had no idea that was the last time we would be able to greet people at the gates. Twenty-five years ago it was so easy to roam around the airport. You could meet people at the gate. You did not need a passport or a special ID. There were not guards everywhere. It was an age of innocence.

On the morning of 9/11, I had an early morning teacher meeting. While we were in the meeting the first plane hit the North Tower. We were happily oblivious. Coming out of the meeting the secretary was very upset about something, but I did not really pay her much mind. I had classes to teach, and she was a bit of a drama queen. I worked on the 3rd floor at Risen Christ School. We had one TV set for the entire middle school. My students had already seen the first plane hit the tower before leaving home and had rolled the TV into my classroom. I walked in the room in time to see the first tower fall. I felt visibly ill and sprinted for the restroom. A few of my students ran after me saying, “Mrs. Greenlee-Herndon, it’s okay, we made it better, we turned off the TV.” In that instant I realized my place was to comfort my students, but I knew that I could not make it better. My job for that morning was to provide comfort for 25 middle school students. We banished the TV into the hallway and did an impromptu prayer. Occasionally, throughout the day my students would ask if we could watch TV again and my answer was always the same, “No, but we can pray.” Thank heavens I worked in a parochial school where prayer was welcomed. We prayed as a class, and we prayed as a middle school. No teaching got done that week. My students were scared. Many of them had parents who worked in high rises in downtown Minneapolis and were worried that planes would come to Minnesota next. I felt their fear. That night, I had graduate school. I went to school out of habit. On my way there I saw many churches open and people streaming inside. My graduate school was the University of St. Thomas. That semester our class was taught by two amazing Sisters. Only half of the class showed up. The Sisters did not think that teaching was appropriate that night, either. We joined them in prayer and in mourning, then I drove home in a daze to sit with Daddy and wonder what would happen next.

As you know, we live under the flight pattern for the MSP airport. All planes were grounded and the silence that lasted for days was eerie. The skies were empty. Loud noises made everyone jump. The entire country was grieving and on edge. As I drove to work the following morning, I saw American flags flying everywhere. What made me sad was when I drove down Lake Street, a multiethnic street that I love, there was not a soul to be seen. Usually, there were always women in hijabs out shopping for the day or men going to the mosque. The silence was deafening. It was a relief to get to school and hear the chatter of voices. I don’t think I taught anything that week, I don’t think any of the staff did. Our job was to comfort our children, to pray with them and encourage them.

Twenty-five years later I sit here with my memories. I remember and honor the brave fire fighters who rushed into the Towers without a thought for their own safety. I think of the workers in the towers who sacrificed their lives so their co-workers could get out. I think of the brave crew and passengers of flight 93 who made a valiant attempt to take the plane back from the high jackers. I think of the thousands of lives that we lost day that and the people who never got to return home that night. I think of the first responders who bravely dug through the rubble, looking vainly for any sign of life. We did not know then that many of them would later die of cancer from the toxic fumes that they inhaled, or that they would have to fight so hard for money for the disabilities that they incurred.

So, Ravi my love, I sit here on the bright blue morning and clearly remember a different bright blue morning when our world turned upside down. I am glad that this is not one of your memories. I grieve for you and for all who were lost on that fateful day. I believe that you and all of these brave souls are running free and healthy in heaven. I love you forever, Mom.

Has Anyone Seen My Muse?

Dear Ravi,

Sorry for not checking in lately, my muse seems to have gone missing. I had a really tough therapy session last week and went into complete autistic shutdown and haven’t been able to blog or journal since. I think Kathy, my therapist, was really frustrated with me because I simply could not speak. Maybe this gave me a taste of what it was like for you. I had thoughts in my head, but I could not nail them down. I could not express what I was feeling or what I needed. In short, it was a bust of a therapy session, and I am still feeling the repercussions of it 8 days later. I meet with Kathy again today, honestly, I am not looking forward to it. I have a hard time identifying emotions as it is, and when I feel pushed or shamed, I clam up.

It has been a tough week. We lost Gloria Steinem, an icon among feminist figures. She never did get to see the ERA written into law. I remember hearing about that in the 1970s and Anabel mocked me for wanting equal rights for women. She said that would mean I would have to be drafted and go into war. Did I want to get shot, she asked. Looking back on it, the draft wasn’t even a thing when I was in elementary school, and even at that young age I knew I was a pacifist and would ask for an exemption. Anyway, I didn’t bother to argue back because even at that age I knew it was not worth it. Anabel has some very strange ideas, and they usually do not hold up in the light of day. No worries, you never have to deal with her again, and neither do I. So, you have Dolly Parton, Timy Curry, and Gloria Steinem in heaven with you and those of us on earth are poorer for it.

Please continue to pray for your Uncle Rob and Aunt Cindy. Rob is back in the ICU with another brain bleed and his hemoglobin is 6.5. As you well know, this is dangerously low. The lesions are taking over his brain. He still wants to fight the cancer, but his doctors are saying that he has reached the end of treatment options. He was at home for about 2 weeks, but Cindy was the sole caregiver and she is exhausted. Please pray for a peaceful resolution for both of them. I just sent out a care package to your cousins Robbie and Aaron. It should arrive on Thursday. I just want them to know that someone is thinking about them and sending all their love. I have the distinct feeling that we are about to go back to Indiana, I am just not certain when. If and when Cindy needs us, we will hop in the car and start driving.

Beginning this fall, Daddy and I will both be tutoring and I am helping teach Sunday School. We will also both be involved in the Gather Program, making autism and sensory friendly church services available at St. Clement’s for those who would like such a thing. I am very excited. I wish that you and Mercury could have benefited from such a thing.

Anyway, it is 4:30 in the morning and I am loose ends. It was raining earlier, which is a huge relief, but the pets do not like the thunder. Nikki is under the bed. Raya and Jack Jack are at my feet. Gloria is sitting in the chair next to me. It is a peaceful scene. One of my African violets just put up a new bloom. Your crabapple tree in the backyard is about ready to harvest. The cherry tree looks green and healthy. I ordered flowers in your memory for church on October 11, the day that we lost you. That same day we plan to put a bird feeder in the front yard and hopefully attract lots of cardinals and other feathered friends. I will check back with you soon. I love you forever. Mom.