Tag: family

Off The Rails

Social media is a funny thing. Mostly, I use it to look for a send silly cat and dog pictures to my friends. It allows me to stay in touch with people I otherwise would not hear from. Sometimes, however, social media gets a bit nosy and a bit creepy. Follow along.

I wrote extensively about Ravi in the last two years of his life. #TeamRavi gained momentum and followers. Our friends were our link to the outside world, cheering us on while we were confined to one hospital room after another. During this time, social media decided to that I needed to see lots of entries on cancer. This was the good, the bad, the ugly, and the flat out absurd. I met some extraordinary people, and I got a lot of spam. I never did find any good information on osteosarcoma, but I did get ads for lots of clinics in Mexico that did not take insurance but claimed that they could cure cancer with sound waves directed into the bone and a diet of coconut. For obvious reasons, I hit delete and kept on moving. After about a year of this, social media decided that my kid’s time must be up and started sending me articles on hospice care. At that time, this was the farthest thing from our minds. Once again, I hit delete and kept on scrolling. After Ravi passed, I was besieged with articles and links on grief and child loss. Some of this was useful, most of it was maudlin and not worth my time.

Last night, things got truly weird and went off the rails. Not one, but two links popped up under grief, but this was no ordinary grief post. This was a “cutting edge seminar” on grief counseling that would let a mourner get in touch with their loved one’s ghost! To quote a dear friend of mine, “I shit you not”. First of all, the idea of ghosts has been around forever. Since when do they need cutting edge technology to communicate with the living world? Why do I need cutting edge technology to talk to a ghost? Can’t I just say “Hi” and they say “Boo!” and we are done? My priest, Joy, says ghosts are bad theology. Maybe so, but I have seen enough weird things in my life not to truly discount the existence of ghosts, or something other worldly. Anyway, I let out a snort, hit delete, and kept on scrolling, as one does.

So, there you go. Social media is weird. It tries to be predictive, and often greatly misses the mark. Yes, eventually we did need help with hospice, loss, and grief, but we did not need social media leading the charge. I don’t need a seminar on grief and ghosts to talk to Ravi. I talk to Ravi all the time and I firmly believe that he hears me. I see him in the sunrise, in monarch butterflies, and in cardinals. In ways, he is tangibly present to me. This does not mean that I don’t grieve him deeply, but I know that his spirit is alive, happy, and free of pain in a plane of existence which I cannot even fathom.

I will wrap this up by saying that social media is not the real world, or even a shadow of the real world. It is just a mishmash of pictures and words. No one’s real life is what they portray on the internet. It is “just sound and fury signifying nothing.” We can “strut and fret” all we like, but in the end, it is the work that we do in the real world, the outside, tangible world, that makes a difference. So, this is my plea to you. Log off and go outside. Touch the grass. Take a walk. Look for cardinals and monarch butterflies. Breathe deeply. Be good humans and we will be in touch. Peace, Harriet, Ravi’s mom.

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

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

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

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

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

Dear Ravi

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

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

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

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

When Boo Bear came back as a butterfly

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

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

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

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

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

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.