Author: snort262

Hello, from the infusion couch! Is this different than the infusion chair? Why, yes, it is! Ravi and I are hanging out in our living room as he gets his IV bolus of saline. As the liquid trickles in, he is becoming more and more animated. Occasionally, he gets up and does a lap or two around the room. I think he just likes seeing me chase him with the IV pole. The cat is horrified. The nurse came, accessed his port, gave him antibiotics, checked his wound (which is healing nicely) and hooked him up with fluids. She will be back in an hour do de access him. Though we have been pushing fluids into his mouth all day he has been super floppy. It is absolutely amazing what a bolus of fluids can do for his energy level and overall disposition.

So, what does one do for an hour when one is stuck on the couch with their favorite autistic friend? One can do lots of things, not including discussing upcoming birthdays, watching Word Girl, researching the next type of chemo Mr. Boo is going to try, setting up a date for a spine MRI, and asking my very patient editor about how to launch this blog into a book. I have been working with Abbey since last spring and she is an amazing editor. We have some finishing touches to add to things, and then we will start pitching our idea to agents. I realize that one can try to sell one’s book without an agent, but also realize that 95% of the time, the manuscript with just get tossed without a second glance. I want Ravi’s story to have a fighting chance.

The saline bag is about 3/4 empty. Ravi is in fine form. The cat is still horrified. Soon, the nurse will come back and de access the port and go on her merry way. Robert will come back from the pharmacy with another of Ravi’s many meds. I think he is up to 10 different medications at the point, given every 8 hours. Shout out to my awesome spouse for keeping the pill minder full and remembering which medication happens when. I handle all of Ravi’s scheduling and My Chart updates. I do a lot of reading and ask a lot of questions when we go to doctor visits. Robert keeps track of meds and does all the driving. Somehow or another, we make it work. This is not a job for a single parent! If you are a single parent and are reading this, you have my undying respect, and can I take you out for a cup of coffee? Robert has returned with food for Ravi from Wendy’s. Food and fluids are happily being consumed. Soon, he will have enough energy for a walk. It looks like a beautiful day outside, time for all of us to get some Vitamin D.

Thank you all for your feedback, your friendship, your prayers and good vibes. You are all excellent humans! We will be in touch. Peace, Harriet.

Hello, friends. It is 3:17 am and my muse is knocking around, again. I don’t know why she can’t keep normal 9 to 5 office hours, but here we are. Today, I am inspired by Eric Carle’s 1969 whimsical classic, The Very Hungry Caterpillar. If I may remind you, this book is about a Caterpillar who wakes up one Monday morning and he is very hungry, so he eats one apple. On Tuesday, he eats two pears. On Wednesday, he eats three plums. On Thursday he devours four strawberries. On Friday, he consumes 5 oranges. Obviously, this is not enough because on Saturday he eats a slice of chocolate cake, a cupcake, and a slice of watermelon. Then, the very hungry caterpillar gets a tummy ache. On Sunday, he eats a nice green leaf. Then in a food coma, he folds himself into his cocoon and rests for two weeks. Fourteen days later, he emerges as a big, beautiful butterfly. Sometimes, I think Mr. Boo channels the very hungry caterpillar. Follow along.

This morning Mr. Boo woke up and he was very thirsty because his kidneys are not working too well. He drank a liter of Gatorade. Then, he drank two glasses of Coke classic. Somewhere in there, his home care nurse showed up and gave him his IV antibiotic. This was too much excitement, so he retreated to his bedroom and rolled up in his blanket, like a cocoon. He slept most of the afternoon. Robert became concerned that he was dehydrated and while he was sleeping, slipped three more cups of Gatorade into his g tube. Mr. Boo snoozed on. The dulcet tones of the Jeopardy theme song lured him out of bed, and he came to watch Ken Jennings hosting celebrity week. While this was happening, he ate two bags of microwave popcorn. For reasons known only to himself, he also carried around a can of tomato sauce. We thought he might like pizza from Carbones, so Robert went to get some take out. On his return, Mr. Boo ate 4 pieces of garlic bread which he dipped in copious amounts of marinara sauce and 5 pieces of pizza. He then collapsed on the sofa with Sam and made comments on the world in general and his upcoming 22nd birthday in particular. Since he was actually staying in one place, I sat next to him and tried to eat my salad. Mr. Boo took one look at those nice leafy greens and tucked right in. He ate all of it. His parents would like to say that he immediately crawled into bed and slept for 14 hours, but he had other plans. While his daddy followed the adventures of Space X. Mr Boo followed the adventures of Sid the Science Kid and Curious George. This was followed by multiple trips to the bathroom and several more loads of laundry. By about midnight, I gave up and went to bed. Mr. Boo and his daddy were happily pursuing their own endeavors. I slipped in and out of sleep, but I had caterpillars on the mind. Eventually, around 3am I got up. I helped Robert corral Mr. Boo into bed. He ate 4 sour patch candies, curled up in a fleece blanket, and went to sleep. I made a pot of coffee and started writing.

Current scene, Robert is still reading about Space X. Mr. Boo is asleep, probably dreaming about food. The dogs are asleep at my feet. The hedgehog is running on her wheel. The cat is convinced that it is time for breakfast. Most sane people are asleep.

Our family is not your typical family. Is there really such a thing? My mom story is probably not your typical mom story. I started out as an autism advocate and blogger. Then, as Ravi’s diagnoses grew, I started also writing about epilepsy. 18 months ago, osteosarcoma highjacked the plotline of our story and I started writing about and advocating for more research into rare pediatric cancers. I have no idea what dips and turns the story line will take next. I do not know how long we will have Mr. Boo with us. We take the good days with the bad. Today was a good, albeit long, day. I watched my son dive face first into gustatory delights. He ended up with a full tummy and tomato sauce all over his face and sticky fingerprints all over the living room, and we are here for it. My only regret about today was I did not take pictures. Speaking of pictures, we are going to have some family pictures taken. We have never been a family for formal pictures. Our last pictures of our whole family are from when Ravi graduated high school in 2020. I want a picture of the three of us, just to have. I am hoping to find a photographer who can capture some of the essence of Ravi, and the love that Robert and I have for him and for each other.

I have now successfully gotten the caterpillar out of my brain and into my blog. Even though I have had several cups of coffee, I think I will go to bed. Hopefully, Mr. Boo will sleep for a few hours, curled up in his fuzzy cocoon. When he emerges as a big, beautiful butterfly, I will feed him again. Be good humans, and we will be in touch. Peace, Harriet.

Hello, FOB, or Friends of Boo. It is 4:38 am. Boo is in his room happily hooting. We are not sure why. He is not hungry, he is not thirsty, he is just awake and rocketing around his room like some sort of demented owl on speed. If we weren’t so tired, this would be absolutely hilarious. But we are tired!

In a few hours we head to Mayo, in Rochester, so the surgical team can get a good look at Ravi’s arm. To my eyes, it looks like it is healing nicely. Our Minneapolis team sent a picture of the aforementioned arm to Mayo two days ago. Mayo thought the arm looked a bit red and called me back. They asked for us to bring him down at 9am instead of 12:45 pm. The plan is to look at the arm, see if it needs to be cleaned out (ie: another surgery) and then he would stay the night for observation. I flat out do not want this to happen. Boo has had more than enough surgeries and hospitalizations in the past few months. As I said, the arm does not look really red or angry to me. My fervent hope is we go see his team, they examine the arm, maybe take out the stitches, repack the arm in its brace, and send us on our merry way. As a precaution, I will pack another set of clothes and meds for us, but I really hope we are home by midafternoon.

I continue to love Fairview Home Infusion. Every few days, we get another installment of supplies. Once or twice a week, a nurse shows ups to do a home visit. They can re access ports, re-dress wounds, take labs and vitals, and just do all the things that are usually done in the clinic. All of this takes about 30 minutes, tops. This is a huge timesaver and is greatly appreciated by all of us. The dogs, of course, think the visitors are all for them and greet every nurse or delivery person with proper enthusiasm.

We met with Dr. Terazakis earlier this week. She is planning for Ravi to have an MRI to best target the bony tumors in his body. Then, she will build a form to go around his body to prevent him from wiggling (he loves to wiggle!) during the radio therapy. He will also be sedated. Treatments will take 5 days. He will come in once a day for 5 days for the therapy. The sites targeted will be in his cervical spine and lumbar spine. For right now, the two new spots on his mandible and base of his skull are just going to be watched. She says that these growths are tiny, and she does not want to do anything with them yet. If they grow, we can target them at a later date. There are always risks when doing anything with the spine, and it could cause neurological damage. On the other hand, the chances of damage being caused are greater is we were to leave these spots alone. So, we are weighing the odds. From what I am told, radio therapy is less hard on the body than chemo. He may experience some fatigue or some GI upset that should go away promptly. Any pain can be managed via medication. We are not sure yet when the radio therapy will occur, probably sometime in mid to late June (happy birthday, Boo) but we know that it will be a very intense week.

Thank you to all of you who follow our story. I seemed to have morphed from being an autism advocate to an osteosarcoma advocate. This does not mean that I am any less passionate about autism awareness and acceptance, but I am also passionate about wiping out a deadly disease. It is nearly 5am. I am going to change clothes and go for a run with the dogs. They will be on their own for much of the day, so this is a chance for them to get their wiggles and barks out. Wishing you all a blessed day. Be good humans. Peace, Harriet.

Hello, friends of Boo. It has been a strange week. Last Monday Ravi had a PET scan. The results of the scan were mixed. The nodules in his lungs are stable. The fungal lesions in his spleen and kidneys are gone. But the cancer has spread to other parts of his body. We are sad. Well, I should say that Robert and I are sad. Ravi seems to be in fine spirits. His hair is growing back in, the IV antibiotics are holding off an infection, and he has been out of the hospital for nearly 3 weeks. So, what is next?

Tomorrow, we meet with Dr. Terazakis, one of the top radiology oncologists in the country. We had met with her once before, a year ago, and liked and trusted her. We are expecting that she will prescribe a series of short radiation sessions for Boo, to try and hold the cancer at bay. From what I am told, targeted radiation is much easier on the body than chemo. The most common side effect is fatigue. Right now, Boo is too weak for chemo. His surgery wounds are still healing. After they are healed, we may try him on a daily, oral chemo that he can take at home. Hopefully, the side effects of this are minimal.

In brighter news, we now have home nursing care! This is a huge blessing. A nurse will come to the house once or twice a week to run labs, give fluids, check the surgery wound, etc. We had a visit earlier this week and she got done in 30 minutes what would have taken us half a day if we had gone into the clinic. I could palpably feel the stress in the house go down when we do not have to report to the clinic every day.

Port de accessing is Boo’s newest game. He has to have continual port access until June 17 for daily IV antibiotics. I do not know if the port tape is itchy, or Boo is just perpetually curious, but he keeps de accessing the silly port. On a weekday this means we have to go into the clinic to have it re accessed. On a weekend, this means we have to spend half a day or more in the ED. Sigh. But, now with home nursing, even on a holiday weekend, we do not have to go to the hospital to get him hooked up again! I simply call Fairview Home Infusion, and the company sends out a nurse to fix the problem. Easy peasy. Twice over this holiday weekend I have had to call for a nurse. We did not have to leave the house, go to the hospital, search for a parking place and then wait for a nurse to help us. We simply hung out at home and when a nurse showed up, she popped in , accessed him, and went on her merry way and we continued with our day! This is an amazing blessing.

Ravi had his yearly assessment by a county social worker last week. I must admit, I felt bad for the poor county worker. He had never had an autism client with cancer before on his case load. He asked me to describe what a bad day with autism and cancer looked like. I told him. He blanched, winced, and then apologized. It looks, though, as Ravi will be able to get more at home supports. Here is my prayer: That I continued to get paid for work for Ravi for 40 hours a week. That we get in home nursing care. That Robert and I get an occasional bit of respite. That Ravi is healthy enough to enjoy a somewhat normal existence.

So, here we sit. Not all good, not all bad, sort of a mixed bag. Thank you to everyone who gave us such a joyous homecoming, who looked after our pets, or who supported us from afar while we were at Mayo. Your actions are deeply appreciated. I am going to sign off as I can hear that Boo is up and about. Anyone want to take a guess is I can still access his port or not? At any rate, he sounds happy. Our boy is happy, and that is all that matters right now. Be good humans and I will be in touch.

Or is it part trois? I don’t know, I have lost track. Anyway, for the uninitiated, RBM stands for Rapid Boo Movement, and Boo is in fine form today. Today, by the way, is Monday, May 13, 3:02 am. Why am I blogging at 3:02 am? Why not?1 Boo is up, ergo, I am up. He just does not seem to want to sleep tonight. I thought he would probably sleep well tonight as he had walked over a mile yesterday, and had eaten really well. No soap. He is up. Not in any discernible pain, just letting out his infamous banshee cries. Right now, he is happily watching his beloved Sid the Science Kid. For a while we got to listen to his wound vac beep until the nurse resecured the line and mollified it somewhat. The resident on call came in to check his wound site. Ravi was all smiles. She was young, blonde and pretty. Ravi beamed and was more than happy to have his wound site checked out. Alas, she decided all was well and left him to his own devices, so he continued to make noise.

The plan is thus: in about 4 hours we will load him into a wheelchair and take him downstairs to the casting room where they will make a new splint for his arm. He will wear this splint and have his port accessed for another 5 weeks. The splint will immobilize his arm. The accessed port will pump in antibiotics. He will get rid of both sometime around his 22nd birthday and then take a well-deserved and much needed bath! Wet wipes can only do so much. I love our boy, but he smells a bit ripe and really needs some shower time. After the splint is in place, we should get checked out and head home. I am certain we will be met by a great congregation of yapping, howling dogs. We are not sure how Nikki, the cat, will react. He may be happy to see us, he may spurn us, or both. Either way, it is fine, we will be home!

Thanks for jumping into my 3am blog. Be good humans and we will talk soon. Peace, Harriet.

Thank you all for your love, prayers, and good energy. As noted previously, Ravi came through his surgery with flying colors. He will be spending the next 6 weeks in a brace to support his left arm. As far as we can tell, he has use of the fingers on his left hand, can wiggle, grasp things, and move them. After the brace is removed, he should have movement from his elbow on down.

The issue right now is his renal function. His kidneys are not happy. They were damaged by a previous type of chemo, and then to add insult to injury, they were further damaged by his anti-epileptic, Topamax. Yesterday, we began titrating down his Topamax and began a loading dose of a different medication. We are very nervous about his, as the Topamax was the one medication that reliably kept the seizures at bay.

We are hoping to come home on Monday. I miss my home, my pets, my bed, and my coffee pot. Mayo is amazing, but I am tired of sleeping on a couch and want my queen sized bed back!

It is almost noon, but Ravi is still asleep. For reasons known only to himself, he stayed up until 4 this morning. He did not seem to be in any pain or distress, it was just another night of RBM, Rapid Boo Movement. Robert will be showing up in a few moments with food, and I am certain he will wake up for that. I plan to get out either for brisk walk or a slow run. The weather and foliage is amazing.

Thank you all for your ongoing support, love, and prayers. We are not alone on this journey. Be good humans and we will be in touch. Harriet.

Good early morning, friends. It is 4;15 AM. Boo and I have been up for a while. I don’t usually sleep in the same room as he does, but the three of us are in a hotel room down the street from Mayo Clinic, where Boo will have his surgery in a few hours. He settled down to sleep around 10pm. I turned off the light, but my mind was racing. I spent several hours praying and meditating. I dozed for a few moments. Then, I noticed little noises coming from the next bed. First it was a series of snores, then a loud sigh, then a hearty giggle. Boo was sound asleep, but he laughs in his sleep. I can only wonder what he is dreaming. I am glad he has good dreams. Over time, the noises grew louder and more deliberate. I slipped into the bed next to him and he grabbed my hand. He lay there for a few minutes and then popped up so sign “drink”. I got him some Gatorade which he happily slugged. He then dove back under the sheets like a determined little ghost. Soon, he popped out again to sign for more drink. More Gatorade pacified him, and he lay back down. I decided to take a shower and avail myself of all the nice smelling soaps in the bathroom. Once out of the shower, I could hear Boo happily racketing away. I handed him his iPad, Dapi, and he happily plunged into Word Girl. I decided to give up on sleep for the night.

I am not certain what Ravi understands about the upcoming surgery. I have explained to him that he has an infection in his left arm. I described these to him as “bad germs”. I explained that these germs had gotten into the hardware in his arm and Dr. Houdek would have to take them out. This is where our wonderful oncology team took over. Dr Carrigan and Dr Greengard explained to him that there was a chance that Dr Houdek would not be able to fix the arm. If this happened, they would have to take Ravi’s arm off, and it would not grow back. Through this all, they remained calm and composed. Ravi looked deep in thought. They told him how brave he was and how everyone on his team was praying for him and thinking good thoughts. They told him that they only wanted the best for him. Most of that night, Ravi seemed subdued. In the next few days, he bounced back, seemingly happy just to be at home and not in the hospital.

Yesterday, we met with Dr Houdek. It was a good conversation and Ravi warmed right up to him (insofar as putting his feet on the good doctor’s lap and using him as a footrest). Dr Houdek showed us pictures of other patient’s arms in whom he had replaced hardware. He said Ravi did not have much left of his humerus to attach the rods to, but he would try. He also said that there was a film of membrane around the hardware that he had to clean away, and a pocket of blood that needed to leave. He would not really be certain until he had a good look if he could repair the arm, but he would give it his best try. I was comforted by the fact that he had done this type of surgery before and had pictures to prove it. We left, feeling a bit more reassured. Amazingly, when we got back to the hotel room, we all crashed for a much-needed nap. An entire month of being in fight or flight mode had taken its toll. When we arose, we went out for tacos and some supplies. All was calm until about 3 am when Ravi began his RBM,or Rapid Boo Movements. I really hope this hotel has thick walls because Boo is letting out some of his shriller squeals, hoots, and bellows. For the moment he is pacified with Word Girl, Gatorade, and a handful of snacks. Robert is hiding under a pillow trying to ignore both of us.

We are to report to the hospital at 10am. The hotel has a shuttle that leaves every 45 minutes . We will catch the shuttle at 9:23. It should only take us a few minutes to get to there, but I like being early. My first move will be to ask for some Versed to take the edge of Ravi. I love that the nurses call it “don’t care medicine.” It certainly does the trick! I am assuming surgery will begin around noon. To my surprise, this surgery is only expected to last 4 hours. His original surgery was 11 hours. As the hotel is close and Mayo will text us with updates, we will probably return to the hotel where it is quiet, to wait.

I don’t know what will happen today. I have faith in God, the power of prayer and the good energy of our dear friends. I know that we are not alone as we venture forth into today. I will provide updates as I am able. In the meantime, be good humans. Peace, Harriet.

Hello, friends of Boo. We are once again in a holding pattern, but at least we are at home. Ravi was discharged from the hospital on Monday. The nurses who had cared for him for the last 18 days gave him a standing ovation. Truly, oncology nurses are the best! We are now enjoying a week at home. Ravi’s port is still accessed, and I am giving him IV antibiotics once a day. So far, he is being a very good sport about this. Robert is in charge of the other medications. At last count, I think there are at least 10 of them.

We went to PT on Tuesday so Ravi could see his beloved physical therapist, Susan , and do some light exercise. He was very happy to see her, but slept most of the rest of the day. We did not get out yesterday, but our lovely priest, Joy, came to visit and give him a blessing. Today, we check in at the clinic, and tomorrow he gets a visit from his longtime friend, Peter. Monday, we report to Mayo for blood work and a meet up with Dr. Houdek who will go over the plan for Tuesday. The following day is his surgery. It will probably take all day. As I said in my previous post, the hope and the prayer are to remove the infected hardware and replace it. The fervent prayer is that Dr. Houdek can salvage Ravi’s left arm.

It is hard to tell what Ravi understands. He knows he is having surgery to replace his hardware. He is not thrilled about that. I have not mentioned the part about possibly losing his arm. We will have that conversation today with our social worker and child life worker at Masonic Children’s. We will also make a mold of Ravi’s left hand, as a memory gesture. My prayer also is for God’s strength through all of this. Ravi needs me to be strong and optimistic. I have to be brave so he can be brave.

I do not know what the next week will bring. I know that your hopes, prayers, and good vibes will sustain us. I thank you for them. I will keep you updated as best as I can. In the meantime, be good humans. Peace, Harriet

Greetings friends of Boo Bear. We are logging in from the 5th floor of Children’s Masonic Hospital in downtown Minneapolis. We have been here for 12 days. 12 days ago Ravi admitted to the clinic with extreme shortness of breath and exhaustion. While receiving a blood transfusion he spiked a fever of 102.5 and was promptly admitted to the hospital on IV antibiotics. For a day we were not sure where the infection was situated. Friday night it became obvious the infection was in his left arm. Emergency surgery was done early Saturday morning to wash out the hardware in his resected arm. Ravi was returned to floor 5 with 2 drains in his arm, a thick bandage, and loads of antibiotics and fluids. It became obvious that the hardware would have to be taken out and replaced. Dr. Houdek, at Mayo, was the surgeon who originally resected Ravi’s left arm. I reached out to him, as he knows Ravi and the hardware best.

Several days passed before I was able to get Dr. Houdek and Dr. Hooks, Ravi’s resident at Childrens Hospital to talk to each other. The conversation happened in the last hour. Basically, the hardware has to be taken out. This is complicated by the fact that Ravi has a healing pressure sore on the back of his left shoulder. Despite our hard work, this is how the infection got into his system in the first place. Dr Houdek is waiting for an OR to open up at Mayo. When that happens, Ravi will be transported by ambulance from Minneapolis to Rochester. Dr Houdek will reopen the arm and attempt to replace the infected hardware. His caveat is this, if he cannot do this, he will amputate Ravi’s left arm.

At the moment I feel as though we are living in a nightmare. I do not know how I can explain to Ravi if something were to happen to his arm. He has been so very brave the last 16 months. He has endured so much. My fervent hope and prayer is that the arm can be salvaged.

Clinically speaking, Ravi is doing well, as long as he is on IV antibiotics. He is eating and sleeping well. He is able to take walks in the hall without being exhausted after 20 steps. His kidneys function is respectable. What we need now is this, an OR to open up and for Dr. Houdek to perform another miracle and salvage the arm. This will be major surgery, just like his surgery of July 28, 2023.

If you are reading this, please pray, light a candle, send you best white light and energies to Ravi and to Dr. Houdek. We will keep you posted as best as we are able. In the meantime, be good humans and we will be in touch. Harriet.

Good morning, all. Ravi is still in the hospital but continues to do well. I hope I am not jinxing things by saying that he will probably be discharged in a few hours. But I want to tell you something magical that happened last night. But, first, a quick refresher on autism and it’s so called “deficits”.

“Autism- a developmental disorder with symptoms that appear within the first 3 years of life.

Deficits in social communication, and interaction.

Restricted repetitive behaviors and interactions, interests, or activities.”

Symptoms/Behaviors:

Reduced eye contact

Difference in body language

Lack of facial expression

Not engaging in imaginary play

Repeating gestures or sounds

Closely focused interests

Indifference to temperature extremes.”

Last night I was sitting on Ravi’s hospital bed, saying goodnight to him before I headed home. He was covered in a blanket, watching his beloved Sid the Science Kid, on PBS kids. I told him I was about to go home but I would return in the morning, and we would go home together. Suddenly, he popped out from under the blanket and looked me deep in the eyes. I smiled at him. He smiled back. He made a sudden move to grab at my glasses. I ducked his hand and put his own glasses on his nose. He beamed at me. His crossed eye straightened out. I wrinkled my nose at him. He wrinkled his nose at me. I smiled, he smiled. I said, “You are my best boy ever, aren’t you?” He gave me a toothy grin in return. I took his two big hands in mine and squeezed. He squeezed back. I leaned toward him. He leaned in towards me. We sat there for a long time, almost nose to nose, just looking at each other and smiling. It was almost like Ravi had read over his supposed list of autism “deficits “and said, “Here, hold my beer.” He was doing everything the naysayers had said that he would never do. He was making deep, intentional eye contact. He was mimicking my facial expressions. He was squeezing my hands. He was inviting me into his world. (Shout out to all the “professionals who said that Ravi exists in his own little world and shows no interest in engaging with others.) I really cannot describe those 15 minutes I spent with him, but they were magical. Ravi and I were in our own little orb and the rest of the world disappeared. For the longest time, we simply sat there, holding hands, looking in each other’s eyes, and mimicking each other’s facial expressions. Our eyes were locked, and our breaths were matching. Sadly, the life of the hospital interrupted this magical moment. A cart clattered by in the hall. A page came over the intercom, announcing a code 21 in the adult ER. (Code 21 is a mental health crisis). The baby in the next room let out a lusty cry. The moment was gone. Ravi squeezed my hand one more time and then slipped back under his blanket fort. I kissed the top of his head and vanished into the night.

As she often does, my muse woke me up early today. Ravi’s deep blue eyes and smile were the first thing I thought of when I regained consciousness. The word “liminal” was running through my head. I thought of all the “professionals” over the past 20 years who listed all the things that Ravi would never be able to do. Then I thought of and gave thanks for all the believers in Ravi, those who knew he would do amazing things in his own time. I looked up the word liminal. Wikipedia describes liminal space as this: “the uncertain transition between where you have been and where you are going physically, emotionally, or metaphorically. To be in liminal space means to be on the precipice of something new but not quite there yet.” Last night, perched on an uncomfortable hospital bed, Ravi and I entered liminal space. Walls and barriers between us fell to the side. I felt deeply that he was letting me into his world, inviting me in. Also, I felt that he was interested in coming into my world. This was a brave new space for us, and the moment ended too soon. But these brief, magical moments gave me hope. Hope for Ravi and hope for his future. Hope for a life outside of the hospital, outside of cancer. For Ravi, and for me, there will never be a life outside of autism. We are autistic. It is our neurotype. This does not sadden me. We do not need or want a cure; we just want acceptance and accommodation. We want time and space to explore the world and pursue our own interests. We want time to be together. I am deeply grateful for the time that we had together last night.

So, what now. I will finish up this blog. I will go for a run, feed the dogs, shower and return to the hospital. Hopefully, I will bring Robert and Ravi home with me. I will look for more liminal space with my son and with the world. In the meantime, be good humans and we will be in touch. Peace, Harriet.