Dear Friends,
July is both Sarcoma awareness month and bereaved parent month. During this month I am raising awareness of Osteosarcoma and raising money for better research and outcomes for this devastating disease. If you are interested in learning more about Ravi and helping fund essential research, please click on the link below.
https://osinst.org/herndon-fundraiser
Thank you for following my story and being good humans.
Peace,
Harriet
Dear Ravi,
The surgery was worth it. When I woke up this morning, I realized that the migraine that I have had since mid-March is gone! I can actually think straight again. What a relief. Daddy and I walked the dogs 4.2 miles today before it got too hot and sticky. The pets are all laying belly down on the coolest patches of floor that they can find. We have AC boxes in your room and the living room, plus a fan. The house is at a very comfortable temperature. We don’t like it too cold as Daddy and I are both heat seeking missiles, but the break from the outdoors is very nice.
This month is both Sarcoma awareness month and Bereaved parent month. My goal is to talk about you and rare cancers all month long and to celebrate your short but highly impactful life. I will be talking to Vanessa from the Osteosarcoma Institute later this week about fundraising ideas this month. I am still an ardent autism advocate, but my new hat is also that of being an osteosarcoma advocate as well. The current administration is not kind to those who are sick or those who have autism or other disabilities. They believe that even sick people who are receiving MA should work or volunteer at least 20 hours a week. We both know that this is impossible. I never had any plans for you to work anyway, we all knew that you were a rec and leisure kind of guy. I just wanted to find welcoming communities where you could live your best life. Now the administration wants to overthrow the Olmstead Act and put those with disabilities back in institutions. This is cruel, callous, and very wrong. I never even had plans to let you live in a group home, let alone an institution. I feel as if we have fallen back into the 1950s where children with disabilities were taken away from their parents, warehoused, and parents were told it would be better to pretend that their children never existed. Ravi, I clearly remember the first time I felt you kick in my womb and I fell madly in love with you. How could I possibly give you up? The longest you ever stayed away from us in your 22 years was when you went to Camp Hand in Hand for 5 days and 4 nights. You had the time of your life, and I was thrilled that you got that opporunity. You got to swim, go on boat rides (your favorite) hike for miles, do music therapy, eat tasty food and make new friends. What an incredible adventure! Every child deserves to attend summer camp. No child or adult needs to live in an institution. Period.
It is clouding over outside and getting very humid. I am glad that we walked the dogs earlier in the day. I did not see any cardinals, but I did see a cute baby bunny. Daddy has some errands to run, and I have some notes to read about writing a strong letter of query. These notes have been sitting on the back burner for nearly 2 weeks, but I did not have the brain power to read through them. Today is a good day for brain power so I will pour over the notes and then rewrite my letter of query. Later on, I have a zoom session with Jenn, and we can talk about how very odd it is to be a bereaved parent and how to raise more awareness about osteosarcoma. My life looks so different than it did 4 years ago. My goals are completely different. I am still an autism advocate, but I am also an osteosarcoma advocate. I am no longer a runner, but I can walk in your memory. I have probably trained my last service dogs, but I still love being surrounded by Australian shepherds. Still, I know that we will recognize each other in heaven. Our love is a bond that will never be broken. To all my readers, be good humans. Love, Harriet.
Dear Ravi,
Remember when I told you about running the Brave Like Gabe 5km, and how this year I was going to walk it virtually? Well, yesterday was the day. June 27 was Gabe’s birthday, and she wanted a race in her memory. As I was 18 days out from surgery, I did not know if I could participate in the actual run, but I signed up, donated money to osteosarcoma and rare cancer research, got my shirt and number and was ready to go! You dad and I walked about 5 miles yesterday and 3.1 of those miles were for you and Gabe. I heard that the race raised over $40,000 for rare cancer research. This makes me very happy!
I was very tired after our walk, but it was a good tired. I am glad we got the miles in yesterday because right now we are under a heat dome. It is about 84 F outside but feels like 94 F. This is an excellent day for daddy and I to finally break down and put in the window AC. The dogs keep asking to go out and then they turn around and come right back in. Nikki has not even tried to make a dash for it. Catherine the hedgehog is in full sploot mode in her habitat.
On Saturday we met up at the airfield with Tom, Penny, and River. Daddy took them all for rides and everyone had a great time. I did not go up as I still have my neck brace for another 4 weeks. I am looking forward to getting it off. Once I am free, I will be able to drive again, get a haircut, go up in a glider, and be able to sleep more comfortably. I am not complaining because you never complained. The brace is doing its job and protecting my cervical spine while it fuses. It will be nice to get some independence back!
The cherries on your tree are fully ripe and ready to be picked. That is my next task for the day. My original plan was to make a cherry pie for Daniel and Robin, but I don’t know if I have enough cherries to do that. I will ask Daddy what sort of tasty treat we can turn these cherries into. Your crab apple tree is also doing really nicely, but I don’t think the crab apples are ready to harvest. I think that will be an adventure for August.
June is such a bittersweet month now that you and Mercury are gone. It used to be my favorite month of the year. Now, it is a time of remembrance and grief. If I could bring you back, completely healthy and happy, I would do it in a heartbeat; but your body is no longer in this world. You fought so hard and now you deserve eternal happiness and freedom. No more chemo, no more seizures, no more pain or fear. I know that you are flying free with Cousin Joyce and a myriad of other good souls. July is sarcoma awareness month, and I am going to use my platform to raise funds for the Osteosarcoma Institute. The therapies used to fight this disease are over 40 years old and they don’t really work. We can do better. Science can do better. As Paul Wellstone said, “We all do better when we all do better.”
I am about to go out and put some water out for the birds and pick the cherries from your tree. I am quite open to divine inspiration as to what to do with them. Fly free my son and know that my love for you and for Mercury will never die. Mom.
Dear Mercury,
Happy 22nd birthday. I hope you are doing well. We have not seen you since you were 18. Do you remember your 18th birthday? I took you and Eli to an Indigo Girls concert. It was directly after the fall of Roe vs Wade and the feminist energy and anger was high in that arena. It felt wonderful to be surrounded by strong, powerful, righteously angry feminists.
I wonder what you are doing now. I know that you and Eli got married a few months ago. What happened to my daughter that I raised to be an independent free thinker? Your world seems so small now, your high school friends have left you. You looked positively miserable in the few wedding photos that I saw. What have you done?
I don’t really expect that you will ever come back, though the door is always open if you wish to. You never even sent a card to Ravi while he was ill or talked to him on Facetime. You did not attend his funeral. I grieve both Ravi and you. My grief for you is more ambiguous. Your brother is dead. You are alive. Both of you are very far from me.
22 years ago you danced into my life and the angels all applauded. During my pregnancy with you I had not sense of your gender. My first words when the doctor showed you to me were, “It’s a girl!” I was stunned and delighted. I had a boy and a girl, both healthy, and I thought that life could never get any better. Though we had our struggles as a family, that time was sweet. You learned to walk at 9 months, spoke in full sentences at 1 year, and were reading fluently at age 2.5. The world was your oyster.
You have chosen a very difficult path. I want to remind you that the world is still your oyster. You have so much potential, and so much life left to live. The door is always open if you want to reach out. Though you claim that I am nothing but your “womb bearer”, I am still your mother. You share my DNA. We had you baptized into the community of Christ. There are some things that you cannot change, no matter how hard you try. If you reach out, you will find an open door and a listening ear. I believe we both need time and therapy to address what has come between us. I am more than willing to give you this time. Love, Mom.
Dear Ravi,
Yesterday was World Juggling Day. We met the Neverthriving at Minnehaha park, grilled, threw things in the air, walked on stilts, played with kendamas and romped with dogs. As I am less than 2 weeks out of surgery, I was just there for moral support. It was a beautiful day with lovely friends.
Earlier in the day, I met with an agent named Katharine. I had sent her my letter of query and my manuscript. She had only wanted 1o pages of it, but I could not figure out how to send only 10, so I sent her the whole thing and told her to stop after the first chapter. To my surprise, she read the entire document, said that her attention never wavered and that I had a strong, compelling writers voice. We spent a lot of time going over the letter of query, which I knew was my weak link. Her first suggestion is not to call myself a mother but an autism advocate and to play up the fact that I am a late diagnosed autistic woman with 2 autistic children whose autism manifests very differently. I had her on conference call and took at least 5 pages of scribbled notes. She was very encouraging and also suggested that I submit some of my essays to the Huffington Post to gain more readers. When we returned from the juggling party, I discovered that she had emailed me her notes from a seminar she gave on writing a letter of query. I was very touched and fired off a thank you note. She was slotted to speak with me for 15 minutes, but gave me 35 minutes of her time. It was time well spent. I feel like I have the ability to move forward on my letter of query. I also have some ideas to add to your story. She loved your story of falling in love with the school bus and said this made you seem very real to her. All in all, between talking to Katharine and celebrating World Juggling Day, it was a banner weekend. Today is Father’s Day and we are just lying low. I firmly believe that Daddy was and is the best daddy in the world for you and for Mercury. He loved you both unconditionally and always will.
Raya did something very brave today; she picked up a new toy and carried it around for a little while. She had no toys as a puppy and is only now learning how to play. She and the kitty have a nice relationship. They lie together and chase each other around. They are very gentle friends. Gloria is seeing her behavioral vet tomorrow to talk about her so called “special needs”. As long as she is fixed like glue to my side, she is fine, but she is very jealous of Raya. The two have not gotten in a fight in ages, mostly because I keep them separate and Raya goes out of her way to avoid Gloria. The other morning, something funny happened. I had Gloria and Jack out in the back yard. Suddenly, Raya pushed her way out. All 3 dogs froze, stared at each other and then ran in opposite directions! No one wanted to start anything. I called them inside one by one, and gave them lots of treats and praise. Slowly, we are all becoming a family, a pack.
I wonder what you are doing today. Alissa and I had so much fun talking about you on your birthday and remembering the good times. She is in town this week and Daddy hopes to take her out to the glider field next weekend. I haven’t seen any cardinals today, but we saw a whole bunch of baby turkeys earlier. They are very cute and fuzzy. I love you and miss you. Mom.
Dear Ravi,
Yesterday was both bittersweet and magical. I had cardinal sightings pouring in from friends across the country. Obviously, you were out and about on your big day. How is it that you are 24 already? I am amazed. We started out the day at St Clement’s, meeting with Roberta on the parish green. We sat and talked, laughed, cried for several hours. The sun was shining, the crows were carrying on a lively conversation, and it was a perfect day to be outside. Later, Daddy and I went down to the chapel to see you. I am continually reminded of what Joy said when she interred your ashes. She said, “Ravi is not here.” She was very right. You are the sunshine on my face, the wind at my back, the bird song I hear lilting in the morning hours. For all of these things, I am very grateful.
Last night, after work, Alissa came over. It was like no time had passed since we had last met. We laughed, cried, howled, snorted, shared memories and food and 5 hours flew by. It was a magical evening. I am so grateful for all of our friends who wished you a happy birthday, touched base, sent cards, etc. I was deeply afraid that no one would remember you, but Ravi, our friends came through. You are deeply loved, remembered, and missed. The cherries on your tree are almost ripe. So far, the birds have not discovered them. The plan is to harvest them in a week or so and then make them into a pie for some dear friend. It seems a fitting tribute.
I am having a low energy day today. I think I poured all of my emotions and energy into yesterday and I don’t have anything left. That is more than okay. It is worth it; you are worth it. You were always worth it. Tomorrow is a busy day. I am meeting with an agent about your manuscript in the morning. In the afternoon is World Juggling Day at the park. In the evening is the opening ceremonies for the Special Olympics. I am resting today so I can fully take part in the activities tomorrow. Luka came to heaven last week. Have you caught up with him? He is a good boy and deeply missed by Laurie. You and Dave and Rosie can take good care of him. Please pray for you Uncle Rob. He is still battling a cancer that just won’t quit. I know that you are in a world without cancer, but we would like to keep Rob on earth with us a bit longer. I am about to go watch the World Cup. The pets will keep my company. I love you forever. Mom.
Dear Ravi,
I am one week out from surgery and slowly recovering. You would think I am very boring, all I want to do is sleep. The dogs are getting rather impatient with me; they want to go for walks! Nikki has been a good cat and is staying indoors. Your baby trees are growing like mad. I can see almost ripe cherries on the one tree and baby crab apples on the other. So far, the birds have not noticed them yet. My plan is to wait until all the cherries are ripe, pick them, and make a pie for a friend.
We are two days away from your birthday and I am in something of a fog. My Garmin can measure my heart rate, my stress levels, how far I travel in a day, but it cannot measure a broken a heart. The sky is blue, birds or singing, life goes on, but you are gone. I miss you deeply. On your birthday Daddy, Roberta and I will meet on the parish green to talk about you, laugh and cry. It seems a fitting way to honor your memory. We will also go into the chapel to visit your ashes, but I know that you are not truly there. You are outside where the wind blows and the birds fly free. I hope you have a wonderful celebration in heaven. Love you forever, Mom.
Dear Ravi,
On Tuesday, I had my spinal fusion surgery. It was a success. My memories of the last 48 hours are a bit scattered. I remember being rolled into the OR and it was very bright and cold. I remember waking up in the PACU. The clock across the room said that it was 2:15 pm. I was happy because my fingers and toes still wiggled and I was not feeling any pain for the first time since last winter. An alarm kept going off and the nurse kept reminding me to breathe. I had a nasal cannula in and was not too concerned about it, but this seemed to be worrying the nurse. I spent a few hours in the PACU relearning how to breathe and waiting for a room upstairs to open up. In the interim, Daddy went home to feed and walk the dogs. Late last night there was a huge thunderstorm. My room had a big window looking out over a park and I lay there and watched the lightning for hours. It was amazing! I later found out that Daddy slept through the entire thing, even when part of our tree outside the bedroom window came crashing down. He must have been tired!
It is now 2:30 am on Thursday morning and Nikki and I are hanging out. I went to bed around 9pm last night and woke up around 1am, in pain. I do not like taking narcotics but reminded myself that I would not get a prize for gutting it through the pain. With some oxy and a muscle relaxer on board I am feeling much better, so I decided to write to you. Everyone who I met at Methodist Hospital was very nice, but I am happy to be home. Friends have been bringing by food, Daddy and my pets are only a few steps away, and there are no alarm bells ringing. I am having to relearn how to move my body in ways that will let my back heal. I cannot lift anything over 5 pounds and cannot do any BLT, or bending, lifting and twisting for at least 6 weeks. The pets are used to me picking them up, but are learning that if I sit down, they can either sit beside me or curl up in my lap. The PT and OT showed me how to shower safely and get into and out of bed, how to get dressed, but no one talked about how to take care of a 12-pound kitty who thinks that he is an arm cat! I can’t tell you how happy we are that Nikki did not stray too far from home and is safely back indoors.
Today is the day that Luka goes to heaven, so please keep your eyes open for him. As soon as he sees you and Dave and I know that he will feel right at home. Laurie, Joel, and a whole host of his admirers will mourn him deeply, but I know that our and Rosie will take good care of him. Warning! He likes to chase geese!
I am not really certain where this letter is going, but I am missing you and wanted to reach out. The animals have given up on me and have returned to bed, so maybe I should too. I love you forever. Mom.
Dear Ravi,
Thanks for checking in yesterday. As you know, today is the day before my surgery, but I have had little time to think about it. When Daddy was letting the dogs in for the last time last night, Nikki slipped out. We realized this early this morning when he did not show up for breakfast, and he is a very punctual eater. I put out a message on Lost Pets, Next Door, and our neighborhood Facebook page. Daddy and I spend hours scouring the neighborhood, rattling treat bags and calling. I had the feeling that he had not gone very far, as he is strictly an indoor kitty. Hours passed. I continued to look and call, climbing under porches and in and out of window wells. The neighbors probably think that I am nuts. News flash! I am! Anyway, I was sitting on the front porch calling and thought I heard a faint meow. It seemed to be coming from the corner of the house where the porch juts out from the bedroom. That area has a huge tree in it, as well as hostas and ferns that have grown wild. I waded in and then army crawled in the direction of the noise. There, in the farthest recesses up against the house was Nikki! His eyes were huge and he seemed frozen in place. He did not protest at all when I scooped him up and waded back out of the thicket. In the following hours, he has had a good drink, some dinner, and is hanging out with Raya. He seems none the worse for wear. Slowly, my adrenaline is coming back to baseline. Now, all the animals are asleep at my feet and I am exhausted. If you were part of Nikki’s homecoming, thank you very much. Order, for the moment, is restored.
We check in to the hospital at 9 am tomorrow. Surgery begins at 11 and should last about 2.5 hours. Penny will be sitting with Daddy in the waiting room. Lots of other people will call or text him tomorrow night to check in. I am hoping that I am only in the hospital overnight. I want to recover in my own home with Daddy and the pets. Luka will be joining you on Thursday. After we recovered the cat, Daddy and I went to sit with Laurie and Joel and give him lots of love. He definitely enjoyed it. I have fond memories of walking with you, Laurie, and Luka at the nature preserve. We had a lot of good times there. I haven’t seen any cardinals today, but I know that you are close by. I love you forever. Mom.
Dear Ravi,
Happy Sunday. Daddy and I went to church this morning. No one showed up to help him with the AV equipment, but he did figure out how to make the microphones work. Hopefully, next Sunday a mentor will step in, and he can learn to do both streaming services as well as sound. Anyway, it all worked out! As Joy often says, we are just learning together. After services we went to the chapel to visit you. It was nice and cool there down, but I am certain that you are elsewhere having adventures with Cousin Joyce.
Today is the day that celebrates cancer survivors. You never got to celebrate that. Oh my goodness! You, in proper cardinal form, just showed up outside my window! Hello, my love. Great to see you. Never once have I said that you lost your battle to cancer. You did not lose a battle at all; medicine simply failed you. Full stop. You stayed with us as long as you were able and then Jesus took you by the hand and guided you home. This does not mean that I do not deeply miss and grieve you, but it does mean that I know that you are in a better place.
I am two days out from my spinal fusion. It feels like I have been waiting for months (actually, it has only been one month) but time has dragged. Suddenly, the surgery is right in my face, and I am more nervous that I would like to admit. We check in to the hospital on June 9 at 9:10 am. Surgery starts at 11:10 am and should last 2.5 hours. I should be in the PACU for a couple of hours after that and then transferred to a room. I hope to go home sometime on Wednesday. Penny is going to sit with Daddy while he is in the waiting room. Robin is stopping by the house midday to let the dogs out and give them some love. A dear friend from church has started a meal train. We are well taken care of. Mostly, I just want to get the surgery over with and head into recovery.
Please keep an eye out for Laurie’s dog, Luka. He should be arriving in heaven sometime this week. He will be deeply missed on earth, but you and Rosie, Dave and Joyce, can make him feel welcome. Today in heaven, Prince is celebrating his birthday. In his honor, Daddy and I are playing lots of his music. I will be talking to Jenn in a few minutes. Her son, Zach, is not a cancer survivor, either. We belong to the mom’s club where no one wants to be a member. It’s kind of a sucky club. We would rather skip the membership and have our sons back.
Just a quiet day here, rain is moving in. I am preoccupied with thinking about surgery, but I wanted to reach out to you. Fly high and fly free, my son. Love you to the moon and back. Mom.
Harriet's Hedgehogs and Autism Advocacy 