Tag: books

World Cancer Day

Dear Ravi,

First of all, some very good news. Two cancer acts have been signed into law. This includes the Mikaela Naylon Give Kids a Chance Act, and the Accelerating Kids’ Access to Care Act. Mikaela was a young woman with osteosarcoma. In her final weeks of life, while on hospice care, she journeyed to Washington DC and spoke on Capitol Hill about the need for more modern treatments to combat rare diseases. Her final acts were ones of advocacy. I wish I could reach out and give her mother a huge hug. Mikaela was like you, fierce and strong, even while facing a stage 4 cancer diagnosis. I will light a candle for her this Sunday at church.

Daddy and I are back from Arizona, adapting to the cold. It is not sub zero anymore, so we have been taking the dogs for daily walks. I even ran a little bit with Gloria, yesterday. It is still very icy, so I am being cautious. I just received a very nice phone call from April, at a Christian publishing company. She said that their review board had read our manuscript, thought it was very well written and interesting and would like to offer me a contract. I am expecting several more conversations with publishers this week and then will choose the one that best fits our needs and our budget. Someway or another, Ravi, we produced at 362-page document that will be released in book, audio and eBook form. It does not seem real. I have wanted to be a writer since Helen Trew first put a pencil in my hand, gave me a journal, and said that I could write anything that I wished. I have been keeping a journal or a notebook ever since. What makes me very sad is that Anabel got hold off all of my notebooks from college, read them and then threw them away. She said that they were just too sad. This begs the question, of course, what was she doing reading my personal journals? In them I also had letters from Mom Sue and friends, jottings on books I had read, what it was like to be a collegiate runner and scholar, and lots of other things as well. Over 30 years have passed, but I still grieve the loss of those notebooks. It felt like she was stealing my voice and erasing my existence. This is only one of the many reasons your father and I have cut contact with my family of origin. Everyone has a story, and they deserve to be able to write their thoughts and not have them thrown into a trash can like they did not matter.

Enough of that, I am still on a high that publishers are reading our book and deeming it fit for print. In the past year, we have had over 4,000 visitors to our blog site. The bulk of these readers are from the United States, but some are from other far flung areas. We have readers from Pakistan, Vietnam, China, Japan, Denmark, Germany, Ireland, the UK and more. Your story is being heard. Ravi, my love, you are not forgotten.

The only thing that bothers me slightly about World Cancer Day is people tend to romanticize it, or make the cancer patients into superheroes or angels. Ravi, your bravery was that of a superhero, but I will never call you an angel. You were a bit of an imp. You stole French fries from complete strangers, launched yourself out of your bedroom window to walk to Super America to get gummi bears, took unchaperoned trips to Subway, and for 22 years marched to the beat of your own calliope. Darling, I love you dearly, but I earned every single grey hair that is on my head! You were sweet, caring, and funny, but you were not angelic. Total stop.

I had a really good conversation with Vanessa at the Osteosarcoma Institute yesterday. We were talking about fund raising. Saroma month is in either June or July and I will do some fund raising then. I have also decided to add a shoutout to OSI at the end of our book as a way for readers to make contributions towards better osteosarcoma outcomes. This seems like a better and more efficient way to raise money than just trying to do it through Facebook or social media.

Ravi, I miss you. I feel that good things are going to happen with our book, but I wish that you were here with me to share the joy and excitement. I never claimed to be your voice, but I am proud to tell your story. Love you to the moon and back. Mom.

Just Dreaming

Dear Ravi,

Last night I had the most amazing dream. In the dream I was in a space I had never seen before. It was definitely not earth, but I don’t know where it was. I was surrounded by happy throngs of people and dogs. Everyone was very at ease. I looked for my dogs and I looked for you. Nothing. Then it occurred to me that maybe I needed to speak a name to call them forth. I looked at all the dogs and called for Rosie. Suddenly, she and Raya showed up! I was not surprised to see Raya, as she is part of my every day life, but I have not seen Rosie since I lost her over 9 years ago. Both dogs appeared before me, in the peak of health. We played together and I showered them with kisses. I wondered if I called your name is you would appear. In a voice barely above a whisper, I called to you. “Ravi.” Just then a big yellow school bus pulled up and your hopped off! I ran to you and held you in my arms. You were real, alive, whole, and healthy. Interestingly, you did not have Sam. You did not speak with mouth words, but you did not need to. We just held each other and that was enough. The dream fades out about then, but I awoke both ecstatic and devastated. I guess that is how grief and dreams work.

Your daddy and I enjoying a very quiet day. We walked the dogs 5 miles before the incoming blizzard and have kept to ourselves. I have no need to interact with the outside world. It is too wild and busy and confusing. I feel safe at home and walking the blocks that I walked so often with you. I like looking at the Christmas decorations but have no urge to have any of my own. Our house looks like it always did. It is homey, full of books, music, pets, and a lot of fur. It looks comfortable and lived in. A place where people can relax and be their truest selves. All are welcome.

I am glad that you and Rosie are together. She was your best buddy from the time you were 4 until you were 16. I miss her. I love Jack Jack, Gloria, and Raya, but I miss Rosie. She was my heart dog, and she took excellent care of you. I am busy looking for part time employment since my last client turned out to be a certifiable nut case. I can put up with a lot, but I can’t put up with dishonesty. I finally got my paycheck for 55 hours of work, cut contacts and walked away. As you know, I do not know do well with extra time on my hands. I have to be busy and productive, hopefully helping others. In your memory, I want to make the world a better place. We are expecting a blizzard tomorrow. You never had much use for snow or cold weather, but we always had fun snuggling on the couch and hanging out with Sam.

I miss you Ravi. Today is one of those heavy grief days. I could tell as soon as I opened my eyes that today was going to be rough. Please look after your Uncle Rob and your Mercury. They are both having a tough time. We hope and pray for reconciliation with Mercury, but there are so many factors, many of them family, working against us. Someday, we hope that they will reach out.

I know you and Rosie are dancing in heaven, free of pain, fear, and cancer. I wish that I could dance with you. I will continue to work in your memory. Love you to the moon and back. You were a very good human. Mom.

The Frog In The Pot

Dear Ravi,

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

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

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

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

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

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

The Cardinal From Ukraine

Dear Ravi,

We have a bit of a mystery on our hands. As you know, on Saturday your daddy and I picked out two trees for you, and I planted lots of crocus bulbs to come up next spring. The mystery came in the mail. It was a beautiful cardinal sun catcher made by an artist in Ukraine. There was a little note from the artist, but no sign of who had ordered the cardinal. I asked your cousin Paul, and he said that it was not him. I put out a query on social media, and while lots of people said that this was a very nice gesture, no one owned up to it. Daddy and I are delighted with the sun catcher but would love to know who sent it so we can send them a thank you card. Puzzling. I am certain that the sun catcher was sent to commemorate the first anniversary of your passing. Anyway, the happily little cardinal is perched on my window beneath my reading chair and seems to feel right at home.

Today was a fairly typical Monday, except for one aspect. I got up early, walked Raya, ran Jack Jack and Gloria, and took a walk with your dad. We met with John and Jenn, our osteosarcoma peers, and later I met with Kathy. The only thing different about today is I finally submitted my author bio to Abbey, my editor! I had gotten completely stuck on writing a query to publishers and the bio. Writing a query is basically trying to sell yourself, something that makes me very uncomfortable. Anyway, I sent that in a week or so ago, Abbey made some changes and copy edited it and now it looks pretty good! An author bio should only be about 100 words. It gives a brief description of the writer, in the 3rd person, and is supposed to pique the curiosity of the reader. I sent this to Abbey a couple of hours ago. To the best of my knowledge, your book is done! Congratulations, Ravi! The next job is to find a publisher who is interested in taking my project on.

So, my son, the week of the anniversary of your passing is here. We have been dreading it. I vacillate between feeling okay, to feeling numb, to not being okay at all. I guess this is all parr for the course. On Friday I am going for a walk with Pamela. On Saturday, we want to spend time with Dan and Robin, possibly cooking and watching a favorite show on Netflix. They were the first to arrive on the morning after you passed and stayed by our side during that long, terrible day. On Sunday I will teach Sunday School to 6 very energetic little girls. The flowers on the altar are being given in memory of you. Afterwards, I will go down to the chapel to see you. On Monday, your trees will arrive and be planted. Ravi, I miss you more than words can say, but I know you are flying free and strong. I hope cardinals will come to our trees and eat all the berries. I hope you are happy. I wish I could hug you just one more time. Love you forever, Mom.

Look who checked in!

For months I have waited and longed for Ravi to come to me in a dream. I have had very vivid dreams where he is missing, and I am desperately trying to find him. I have brief moments of grace, early in the morning, before I open my eyes, when I think that he and his sibling are still under my roof. But, until early this morning, Ravi has never shown up in a dream.

The setting of this dream was a little pub in County Kerry, Ireland. I was there with Robert, Peter, and his girlfriend, Amber. Ravi was a bar keeper, passing out brimming pints of Guinness. For some reason, there were other young children and babies at this pub. Robert and I were giving them many toddler and baby toys that Ravi had outgrown. The mood was very upbeat and happy. Ravi was wearing his favorite Irish hat that Peter had brought him many years ago and was his favorite accessory. In the interim since we had last seen him, he had grown a magnificent moustache, of which he was very proud. I woke up smiling.

A bit later I checked my phone for messages. Two friends in two very different locations had sent me pictures of a red male cardinal to show me that Ravi was showing up in their backyards to say hi. As I sat in my favorite reading chair, drinking coffee, I had the very strong feeling that Ravi was right in the next room, just out of the corner of my eye. A few hours later Alissa and Alan came over to visit and hang out. Alissa told me when she had stopped by the other night, Ravi was definitely in the back of her car, eager to go for a ride, or any good adventure. Towards the end of the visit with Alissa and Alan, I gave her Ravi’s yellow Nik’s Wish hat. Alissa had never seen him in that hat, as he got it after she had moved to Hawaii. I told her that Ravi wanted to go with her and see the ocean and play on the beach. Tears welled up in her eyes and she took the hat eagerly and tenderly.

These are just a few of the signs my friends and I have gotten today that Ravi is well and on the move. You might see him as a male cardinal, a beautiful monarch butterfly, or a bar tender. When you see him, raise a pint or a hand, tell him hello, and that mama bear is very proud of him. In the meantime, be a good human. Peace, Harriet.