Tag: health

Cardinals and fusions and walks, oh my!

Dear Ravi,

Thank you for stopping by yesterday. Daddy and I were out walking the dogs and you were sitting in a nearby tree. You fluffed out your feathers, sang a few notes, then did a few aerials maneuvers. Obviously, you were having a great day. Seeing you always lifts our hearts.

Lots going on here. Remember back in 2019 when I had a spinal fusion and was really boring for a while? Well, another one is on the docket. The previous fusion, C4 through C7 is still in good shape. The problem is that C3 and C4 are most unhappy. There is not disc in that space, bone is lying on bone, and this has caused a myriad of weird neurological problems. For months, the neurosurgeon I had been seeing kept telling me that there was nothing he could do to help me. I saw a new doctor yesterday who confirmed that something was really wrong and offered me a plan forward. He will fuse C3 and C4 together, thus getting rid of the nerve pain. Obviously, this won’t happen overnight, this is going to be the summer of recovery, but I feel better knowing that I have a plan in place. Right now, I cannot turn my head, my hands are numb, and my balance leaves something to be desired. In short, I would flunk a field sobriety test. So, until at least late July, I will not be driving. When I go for walks, I will use my trusty trekking poles. I am trying to convince the animals not to run under my feet as I have an absolute phobia about tripping and falling.

Please pray for your Uncle Rob. He has two surgeries coming up, next Monday and next Tuesday. The surgeon will embolize his tumor and then recreate his hip and femur. He is such a great guy and was a wonderful uncle to you. We pray that God will guide the surgeon’s hands and lead him into recovery.

Right now, all is quiet. The pets are asleep at my feet. I feel better knowing that I have a plan for my cervical spine. Daddy is still snoozing. Your trees outside are blooming. I love you forever, Mom.

Got passed by a slow moving snail

Dear Ravi,

Your trees are blooming and very happy. Raya is doing a good job chasing the bunnies away from them. It is about 65 F and sunny outside. Great day for dog walking. More on that in a bit, it was a very slow walk. On Friday, the pain in my cervical spine reached intolerable levels and I called the nurse help line. She listened to my symptoms; inability to turn my head, numbness in my hands, loss of coordination and off the charts pain. She sent me directly to Urgent Care. For once, I got a female physician who actually listened to me, ran a bunch of tests, and did not dismiss my symptoms. She sent me off for an emergency MRI, even though I had had one back in early March. The MRI shows considerable changes. I have neck pain and head pain, bilateral hand numbness, a history of fusion, cervical myelopathy and stenosis, and hypereflexia. As she put it, “You have a lot going on.” She prescribed a course of steroids and Lyrica, which is a step up from Gabapentin. The only thing I really notice from the meds is that I feel really stupid. At least the Lyrica helps me sleep, and hopefully the steroids are reducing the inflammation. For obvious reasons, I did not make it to church yesterday. I was supposed to teach Sunday School and was very sad to miss it.

I convinced Daddy that I needed a slow dog walk today, just to get outside and feel the sun on my face. It was a super slow walk. I think I got lapped by a snail. The dogs and the kitty think that I am very boring. I feel very boring. My thoughts feel like molasses in January. I am really hoping that the surgical consult on Thursday will give me a road map forward. Dr Hutter, who saw me on Friday, looked at my past notes and said that she was going to make certain that my medical team would do better. It is always nice to feel validated.

On a brighter note, I got a haircut and left at least 6 inches of hair on the salon floor. I feel much lighter and freer. Previous to this, I was feeling like a mop wearing running shoes. I also went over to visit Pam and sit in the sun with her and her dog. Driving home I realized that I should not be on the road. My dear 2009 Ford Fusion does not have back up cameras, and I cannot turn my head to see where the traffic is. As of now, Daddy is the driver for the family. He is happy because he got out to the airfield yesterday and hopes to go t0morrow. It always lifts my spirits to know that he is doing something that he loves. Please pray for your Uncle Rob who is having major surgery next week. The surgeon will embolize the tumor in his hip and femur and then rebuild it. He will be in the hospital for about a week and then possibly in a rehabilitation facility after that. The major prayer right now is that the hip and femur to not collapse on their own, as the tumor has eaten away about 90 percent of them. He is using a walker to get around and just had a chair lift put in on the stairs.

I have not seen any cardinals lately, but Karen sent me pictures of one hanging out in her backyard for Hannah’s 30th birthday. Of course I did not see you, you were at the party! To know that you are flying free and having fun always lifts my spirits. Soar high my son, know that I love you forever. Mom.

Nothing makes sense

Dear Ravi,

I deeply believe that things make more sense in heaven than they do on earth. Honestly, earth is more than a bit nuts right now. Washington is on fire and our country is being laughed at by the rest of the world. I am certain that you know all of this, so I will not elaborate.

Your trees are blooming and the daffodils are very proud of themselves. Everything is green and the earth smells good. Taking daily dog walks is the only way to ground myself right now. I was handed a disappointment yesterday. I was scheduled for a steroid injection into my C spine this morning. Late yesterday I found out that my new health plan had not given prior authorization, so the procedure was canceled. The clinic apologized and said they would schedule me as soon as possible as soon as MA approved it. In the meantime, I am on hold, metaphorically and physically. I am hoping that this injection helps. You never complained about your pain, and I will not complain about mine, but a little medical help would be appreciated.

In a few weeks I will be helping to represent the Gather program of St. Clement’s at AUSM’s Steps of Hope. We will be talking to interested parents about our autism and sensory friendly services. It is also a good chance to see what services are currently available in the Twin Cities. In the past I have found such events focused mostly on boys with autism and early intervention. As you know, services tend to vanish after one ages out of the system at age 18 or 21. Though I believe that early intervention is crucial, I wish there were a greater focus on autistic individuals with higher support needs and females. In your name, I will continue to reach out and advocate.

Please pray for your uncle Rob and your Aunt Cindy. They need a miracle. We all are unanimous that cancer really stinks! You, Rob, and countless others all know this. I never wanted to wave a magic wand to take away your autism. I tried to make your world a better place, accepting that autism is just as much a part of you as it is of me. BUT! If I could have that magic wand for a just a moment, I would banish cancer forever.

Not everything is grim. Spring is here. I have brunch and walks planned with friends. I continue to advocate for inclusive places for individuals with autism. I continue to tell your story. You are always on my mind and in my heart. Love you forever. Mom.

This, that, and the other

Dear Ravi,

Sorry that I have been remiss in writing to you. I have visited you several times, but my muse has gone quiet. I think that she is tired of the winter and lacking in inspiration. I am very excited about several things. The Gathered Community at St. Clement’s continues to grow and gain forward momentum. As you know, we are creating a new worship style for non- neurotypical people, just like you! Our next service will be during Holy Week, and then we shall plunge full time into providing this ministry in the fall of 2026. This does not mean we won’t be working feverishly behind the scenes to pull this off in the meantime! In other news, I am going to a writer’s workshop in April where I can spend 9 hours with 200 other writers refining my craft and getting a chance to pitch our manuscript to an agent. Last week, I met with a different agent for a review of our letter of query. She had good suggestions for me how to tweak the work to make it more appealing to other agents, and I spent about a week stewing about how to do this. Inspiration dawned at 3:30 this morning, so I hopped up and got to work. Right now, the letter is waiting to be edited by your daddy, and the cat and the dog are napping on my pile of notes. I am under a heated blanket with a cup of coffee. For the moment, life is peaceful.

Do you remember in 2019 when I had an emergency spinal fusion? That surgery, fusing C4 through C7, gave me 6 good years. What I have recently discovered is that bones either above or below a fusion begin to degenerate over time. I have not been able to run since October, due to the pain. I did weeks of PT, but it only brought a modicum of relief. At the direction of my neurosurgeon, I am going in for more scans and nuclear medicine next Tuesday. Hopefully, these tests will pinpoint where the pain is coming from. He thinks that doing steroid injections into my cervical spine will be the next step. Historically, I have not had much luck with steroid injections, but he wants to try this before possible surgery. Right now, he cannot guarantee that the surgery will fix the pain, and if he does choose to operate, he would fuse C1, C2, and C3 to the base of my skull, making me lose 90 % of the movement in my neck. Last time I had surgery the surgeon made an incision in the front of my neck, which had a shorter recovery time than if he had gone in through the back, which cuts a lot of muscle. This time, the surgery would have to go in through the back of neck. If the surgeon were to go in through the front, I could lose the ability to swallow or to speak. Obviously, I am not a fan of this idea! I was disappointed with this particular neurosurgeon as he did not seem to take into account the amount of pain that I am in, and how it is difficult to do activities of daily living. He did not give me a lot of options, or much, if any, hope of being pain free and able to properly function. I did call Mayo Clinic, where you had two lifesaving surgeries, but they will not take my insurance. So, I am looking for a second opinion within my network. To say the least, American healthcare is a joke. There is always tons of waiting, negotiating with insurance, and catastrophically high bills to pay. I am more than a bit disgusted.

There are, however, things to be excited about. Eventually, spring will come and I can work in the garden. I will get to see your two trees that we planted blossom and grow. There are writing workshops to attend and blogs to write. There are agents to talk to. Your story will not be forgotten. There are Sunday school classes to teach and worship services to attend. So, not all is bleak. I hope you know how much I love and miss you. Please pray for Mercury, as she has done some incredibly foolish and damaging things. Please pray for your Uncle Rob as he still continues his battle with cancer. Daddy and I love you forever and ever. Mom.

International Childhood Cancer Day

Dear Ravi,

As you know, I stopped in to see you earlier this morning. I hope you could hear the happy chaos of my Sunday school class down the hallway. They were few in number today but made up for it in enthusiasm and sheer noise. Today is International Childhood Cancer Day, a day that we reflect on the living and on those who have passed. We also reflect on the lifelong afflictions that cancer survivors live with. Even when the chemo is over, the bell is ring, the parties have stopped, the symptoms from chemo remain. More often than not, survivors suffer from permanent neuropathy, inability to digest many foods, neurological problems, and osteoporosis. These are the quiet symptoms that are rarely said out loud. After one rings the bell, one’s family and friends except everything to return to “normal”. Ravi, there is no normal after that first scan shows a tumor. Life is turned upside down, capsized, and that ship will never sail easily again. That first scan marks the end of an era, an era where cancer patients were “healthy.” It’s not just the vomiting and hair loss. A cancer survivor may seem alright on the outside, but there are a myriad of health problems on the inside that they will battle for the rest of their lives. My love, you did not survive long enough to suffer the aftermath of chemotherapy. You lived with cancer as long as you could, and then you gracefully and peacefully passed away in my arms. You ascended directly into heaven, leaving your daddy and me to try and comprehend a life without you. Life still does not make any sense. Minnesota is still in turmoil. Our immigrant neighbors hide in their houses. Children are afraid to go to school. Parents are afraid to go to work or to buy groceries. The Whipple Building has become a transport station where innocent people are sent to concentration camps. These are bleak times, but the brave people of our state are fighting back. We march, we protest, we bring aid and food to our neighbors. We call our representatives. I have never been more heartbroken for my state, but again I have never been so proud to be a Minnesota. I moved here 27 years ago and set down taproots. I raised you and your sister here. You are grounded here.

It is a sunny day. Parkas are not needed. Two of the dogs are on the back patio, sunbathing. Gloria and Nikki are inside sharing a sunbeam. This is a false tease, a false spring. Temperatures will drop this week, and there is a chance of snow. Nonetheless, we have off shaken off the deep freeze that we felt down to our bones a few weeks ago. The ice on the sidewalks have melted and the bird songs sound a bit louder. With spring, hope will come.

I miss you, Ravi. Please pray for your sister, Stirling. She has made some terrible mistakes, and I fear that her wellbeing in on the line. She was not there for you during your illness or even at your funeral, but she is still family and we pray for reconciliation. Pray also for peace and victims of fear, injustice, and oppression. Remember your baptismal covenant. You and your sister were both baptized into the body of Christ and that will stay with you forever. You are now one of the company of saints and angels, and martyrs. I will continue in your light and in your memory. Right now, Daddy is a juggling with some dear friends. I am sitting in my reading chair, in the sunshine, reflecting on the amazing life that your lived. Love you forever. Mom.

What is your dream job?

Dear Ravi,

This was the writing prompt for today. I can answer this easily, caring for you was my dream job. You had PCAs since you were four years old. Some of them were wonderful and became a part of our family for years. Others I quickly fired, such as the one that emptied our liquor cabinet. Daddy drinks rarely and I do not drink at all. One day when reaching for some cooking sherry Daddy noticed that almost all of the bottles of alcohol in our cabinet were empty! We had three different PCAs at the time, and I trusted two of them with my life. The culprit was obvious to us and he was quickly dispatched.

When you were fifteen you developed epilepsy. The nurse in the ER warned me that I would never sleep the same again, that I would always sleep with one ear open. She was entirely correct. Even now, I still sleep with one ear open. It’s a special needs mommy thing. At this time, I realized that I could not work outside of the home, because I had to be ready at any moment to come get you from school or an activity in case you had a seizure. I dropped my tutoring obligations and my nanny job and became your full time PCA. As to your epilepsy, you were trialed on many different medications. At one point, you had a beautiful run of 18 months seizure free. That was amazing. Sadly, after that the seizures became much more common. After you were diagnosed with osteosarcoma your seizures became so much worse. My theory was that your stress level from being in the hospital was super high, your body was very fragile, and this caused you to have more frequent and severe seizures. Your doctors admitted that my theory might be correct, but they did not have a lot of data about treatment resistance epilepsy and chemotherapy.

Boo, I loved being your PCA. We could choose to do what we pleased with our days when you were not in school or when we were shut down during Covid. We had our own little bubble of friends and our own fun activities we could do on our own. You did not like online school so Alissa and I took over teaching you everything we could about the outside world. We followed your interests, and even when our world seemed very small, you were happy and thriving.

After your osteosarcoma diagnosis, carrying for you was a 24/7 kind of job, but I still loved it. Your daddy and I were perpetually exhausted, but it did not matter. You were the center of our existence. Never have you been more loved. I have had great jobs and terrible jobs since 1989, but I never had a job like I had when I was your caretaker. Though it is often painful to think back on the last 22 years of your life, you, me, and daddy were one connected unit. We laughed together and cried together. And, at the very end we said goodbye to you as your soul slipped away to freedom.

I am working part time at most right now. I don’t want to work full time. I tried it less than 8 weeks after we lost you and it nearly destroyed me. I still love being a PCA and caretaking, but it is much less of an emotional commitment. I can go home at the end of the day and turn my mind to other things. Ravi, you were my dream job, the best job ever. Please know that. You appear in my dreams often. Sometimes, I wake up smiling, other times I wake up in tears. You will never be forgotten. Thank you for giving me the opportunity to help you, love you, care for you. Love you to the moon and back. Mom.

Health Insurance?

Dear Ravi,

I am on hold with MNsure. I have been on hold for 45 minutes. I applied for health insurance last week. Today I received a letter saying that my application was denied as I am deceased and already have different insurance. Pardon my language, but WTF? How can I be both dead and have other health insurance? This makes no sense at all. I have spent hours upon hours on hold with different health insurance agencies over the last 2 weeks, trying to prove that I will need health care in January, that I am not dead, and I have, in fact, paid the bills for my cobra on time and they can’t just take my insurance away. This is crazy. Are things less nuts in heaven, because things are bat guano crazy down here, and don’t even get me talking about all the trash coming out of Washington DC.

I do have good news. I start a new caretaking position tomorrow for a very nice lady. She is neuro spicy, like us, and seems like a lot of fun to be around. I will help keep her organized, help her with chores, and drive her to medical appointments. Thankfully, this job does not involve any heavy lifting. My back is still very grumpy, and it is another 16 days until I see the neurosurgeon who will hopefully take me seriously. I have not run in weeks, but I am walking the dogs and your dad, getting in about 35 miles per week. Like you, I was never very good at sitting still. To be happy, I have to have fresh air and movement in my day, and meaningful work. For me, caretaking is very meaningful work. I loved caring for you, and others as well.

Update Ravi, I got through to MNSure and they said that no, I am not dead, but I need to call Ramsey County. Of course, they are experiencing a high volume of calls so I am back on hold and writing to you. I wish I had something cheerier to write you about than the state of US health care. Thank God for Minnesota Assistance, or MA, which is what you had. Because of our wonderful state and governor, we never paid a dime for your 22 months of care. Cancer care often can bankrupt people. It is so wrong, and so cruel. We are also blessed with an outstanding social worker who dealt with the insurance company while your daddy and I cared for you.

Success! Ravi, I finally got a live person at the Ramsey County number. I told her I was very much alive and that I would not have any other insurance after the end of this year. She was really nice, and we both had a good laugh. I hope I am done with phone calls and dealing with people today. I just want to hang out with your daddy and our pets. Thank you, my love, for listening. Please keep an eye out for Mercury, they are in a really bad position. I love you to the moon and back. Mom.

Bittersweet

Last month, Masonic Children’s Hospital held a Pediatric Day of Remembrance. We did not attend this event because I can’t even imagine myself setting foot back in that hospital. Every0ne there did a spectacular job of caring for Ravi. Many of his care providers even attended his funeral. But I don’t think I can ever set foot back in that building. Too many memories and too much loss. Anyway, we submitted a picture of Ravi and short story to be on display with the other photos of children whom medicine has failed and died too soon. Today, we received a small package in the mail. It contained a wooden circle with Ravi’s name written on it. Attached were some ribbons, some beads, and a small bell. It was clear to us that someone had spent time on this project. I am looking for the perfect place to hang this little totem of Ravi. I haven’t found it yet.

It is funny how sometimes just opening the daily mail can be a gut-wrenching experience. We had been having a fairly normal day, up to that point. I had gone on a walk with friends, attended a job training orientation, and had taken another walk with Robert. Now, I feel like my heart has been ripped loose and thrown on the floor. That little totem we received is so bittersweet. It reminds us of Ravi and how many people that his life touched. It reminds us of all that we have lost. I am glad to see the end of July. This month is both Sarcoma awareness month and Bereaved Parents month. I have been limiting my time on social media because it feels like I am being pulled into quicksand. I will go to my grave being both an Autism and Osteosarcoma advocate. Osteosarcoma is a rare disease and gets very little in the way of funding. The treatments used to combat it are at least 40 years old and barbaric. Furthermore, cancer treatments are designed for the adult body, not the pediatric body, and these toxic treatments cause either the cancer to come back later, or major health issues as these children mature. The 5-year statistics are grim, to say the least. We need cures, we need better outcomes, and we need them now. Medicine could not save Ravi, but maybe research and better funding can help the next generation of children. I am a pacifist and refused to say that Ravi was battling cancer. This leads one to the obvious conclusion that there is a winner and a loser to this battle. Ravi did not lose his battle to cancer, medicine failed him. Full stop.

So, this brings me back to the bittersweet totem that we received in the mail. I am glad that Ravi was loved and is remembered, but I am still heartbroken. I don’t think that the grief from child loss ever goes away. Some days are better than others. This is a very bittersweet kind of day. Thank you to all of you who were a part of #TeamRavi. Your love and support will never be taken for granted or forgotten. We are all part of the same team. Be good humans and I will be in touch. Mama Harriet.

Months and Meanings

Dear Ravi,

Until now, I had no idea that July was both Sarcoma month and bereaved parents’ month. We never paid any attention because we were too busy trying to keep up with you! Why would a certain month matter when we still had you around? Now, both Sarcoma and Bereavement month seem glaringly obvious. I hate to say it, but it is rather annoying, or maybe I should say, cloying. I am glad more attention is being given to sarcomas, but I don’t like the way that cancer patients are described. Often, they are described as little warriors, having a smile that lit up the room, as having delightful personalities. This is all very nice, but it tends to elevate the patients to a level that perhaps does not make them comfortable. Ravi, I never saw you as a warrior. You did not “fight” cancer. You were an incredibly brave 22-year-old who lived the best you could with all the curveballs that the universe threw at you. You did not fight cancer any more than you fought autism or epilepsy. You just lived with them, the best that you were able. After your death, your dad and I mourn you deeply, but we do not elevate you to the status of an angel. You were a great kid, no doubts there, but you had your quirks. You escaped out your bedroom window and walked yourself to Super America in your footie pajamas because you wanted some gummie bears. A dear friend describes you as a shark. You would school around until someone left their drink or French fries unattended and then your shot in for the kill. You hated opera and loved Taylor Swift. Like your mom, you fervently believe that the 1980s produced the best music ever. You had a wicked sense of humor and a great belly laugh. But, you were a 22 year old dude. You liked pretty girls and fast cars. I repeat, you were not a warrior, you are not an angel. We miss you deeply, but I am not going to paint your life and your memory as something that it wasn’t or isn’t. Yes, there is a place for sarcoma and bereaved parents. Let’s not glorify cancer or those who are cancer patients. Give space to grieving parents. But, folks, let’s keep our kids human. This maudlin pathos is a bit cloying. I see Ravi in monarch butterflies and cardinals. I see him flying free. He is living his best life now, while those of us on earth shuffle along the best that we can, with our feet of clay. Okay, rant over. Go forth, be good humans, and look for miracles. Love,

Harriet

Hospice Survey…Really?

Sometimes, things that land in your mailbox are good, like a note from a dear friend. Sometimes, things that land in your mailbox are not good, like an overdue bill. Sometimes, things that land in your mailbox are just plain weird. Last week, I got a survey to fill out about the hospice care team that took care of Ravi in his final days. I did not fill the survey out for several days and was sorely tempted to crumple it up and throw it away. I finally decided to fill it out, as maybe it could help someone else.

Filling out the form was heartbreaking, as it took me through Ravi’s final week on this planet. I gave high praise to the nurses and aides who cared for him. I mentioned them by name and gave them exemplary marks for going above and beyond what they needed to do. The questions at the end of the form had me scratching my head. They wanted to know if I would use their services in the future. The options were: yes, no, or maybe. What I really wanted to tell them was that I sincerely hope I never have to use hospice services for a loved one again. The other question was: Would I recommend their services to friends or family? I had a sudden vision of my review showing up on Yelp, or some a social media page. Part of me was laughing, in a gallows humor sort of way, part of me was simply shocked. No! I am not going to recommend this hospice service to anyone that I know and love. I never want anyone to be in the kind of position where they are planning the last week of their child’s life. I never want a parent to go through the heartbreak that Robert and I have been through. Fortunately, there was a space at the bottom of the survey to make additional comments. I gave high praise to the nurse that walked us through that final, horrible night. I told the hospice agency that I was not going to recommend their services to anyone else as I am highly superstitious and do not want to pass on bad luck.

As I said before, many things pass through your mailbox. Some are good, some are bad, and some are just plain weird. I hope that somewhere in the universe Ravi is running free, cured and whole. I hope I do not get any more weird mail for a while. I hope that none of my readers get any mail of this sort.

I am going to pivot here. For years, this was a blog about autism and Ravi. Thank you to my dear followers who kept up with us for so long. Though I deeply miss and grieve Ravi, I do not want him to see what our country is on the cusp of becoming. I fear for our marginalized groups, the poor, those with differing abilities, those who are LGBTQ, those whose skin color may be different from my own. I will still talk about autism, and at times, osteosarcoma, as these are very important issues to me and to my family. But, as I pivot, I want to be a voice of hope, I want to be a voice of change, above all, I want to be a voice of kindness, especially to folks to whom kindness is rarely extended. Ravi is no longer with us, but his legacy will live on. I always fought for my offspring and for issues that I hold dear. I hope, my readers, that you will continue with me on this journey. Be a good human, do it for Ravi. Peace, Harriet.