Tag: love

Saints of God

Dear Ravi,

It is good to be back in Minnesota. As you know, we were in Indiana for a week, supporting your aunt Cindy after the death of her husband, your uncle Rob. The funeral was beautiful and tragic. Rob liked all the “smells and bells” of a high church, so the service included incense and bells. Father Allan gave the homily and Doug, Rob’s brother, gave a beautiful eulogy. The recessional was the same as the processional at your service, I Sing a Song of the Saints of God. It seemed very fitting. Cindy said that she chose that on purpose. It is an odd time that follows the funeral of a loved one. Everything slows down and nothing seems quite real. Fortunately, your aunt is surrounded by friends and her parish. Aside from filling out paperwork, there is nothing pressing for her to do. The funeral is over. Rob is buried. Time grinds slowly and grief beats a tattoo on the heart. Please welcome your Uncle Rob to the afterlife and pray for Cindy, Robbie, and Aaron.

I am grateful to start a new month. September was the month for awareness of childhood cancers. Though I will never stop advocating about autism or osteosarcoma, I am glad that we are entering October. Having cancer on my social media feed for a month was exhausting. Your two trees are doing well. I think it is time to harvest the crab apple tree. We are coming up on your second anniversary in heaven. I have ordered altar flowers in your memory for October 11. After church, we plan to buy a bird feeder for the front yard and fill it full of seeds that will hopefully, attract cardinals. Speaking of cardinals, I just got a sweet present from Jenn, my bereavement peer. She sent me a candle in your memory and a crocheted red cardinal. They are sitting on the dining room table. On the windowsill next to me are two tiny dragons. Rob loved dragons and had been creating and hand painting them since the age of 12. There were over 2,000 dragons of all sizes in his house. Family members each picked out a dragon that spoke to them. I chose 2 baby dragons that reminded me of you and Rob. The green one speaks to me of Rob, and the red one reminds me of you. The rest of the dragons were carefully boxed up and taken to the church. At the reception following the funeral, people were invited to take home a dragon that reminded them of Rob. Many of the dragons have now found new homes. It is a beautiful tribute to their creator. Rob will live on in the hearts of those who knew and loved him.

I miss you so much, Boo. I wish that you and Rob were here, healthy and happy. You are my first thought when I wake up and my last thoughts as I drift off to sleep. I continue to submit my manuscript to agents, but I have not gotten any bites yet. I will continue to advocate about autism and osteosarcoma. I will continue to tell your story. Love you forever, Mom.

The Algorithm

Dear Ravi,

Sometimes I really hate social media. As soon as you were diagnosed, my feed was flooded with cancer information, some of it useful, most of it laughably inaccurate. Newsflash: coconuts do not cure osteosarcoma. If a clinic does not accept any insurance, they are bogus. Your autism and your cancer were not caused by vaccinations.

In the 6 days following your Uncle Rob’s death, Facebook has inundated me with hospice and grief videos. Some are fitting, some are outrageous. I am still mad at social media for sending me hospice videos a year before we ever considered it for you. I guess they figured a kid with stage IV osteosarcoma could not last forever, so I should take this as an omen. Instead, I snoozed these videos for 30 days, again and again and we fought harder. Gradually, over the past 2 years these videos have thinned out a bit. I see more things that I like; such as Aussies being silly, cats being snarky, and goats doing yoga. You know, the things that bring a smile to my face. I am tempted to either throw my phone out the window or sage the living room. I did snooze St. Jude’s today because I think they are a cult. They may not charge a cent for treatment, but their hospital only has 70 beds available, they cherry pick who they will treat, and they will not let patients or parents seek a second opinion. These are all deal breakers for me. You got excellent care at Masonic Children’s and Mayo and I have no regrets. I also have a lifetime supply of return address stickers because a family member sent them a donation over 4 years ago and they refuse to leave me alone. My money will always go to The Osteosarcoma Institute. Period.

It is a rainy day today. Between showers, Daddy and I walked all 3 dogs. I am slightly damp right now, but happy. Your baby trees are rejoicing in the rain and looking very lush and green. I am going to do some writing this afternoon and some cleaning. I am fully acknowledging my grief for both you and Uncle Rob, but I also feel the need to be productive. I got a very sweet text from a friend last night. She had donated to OSI and on the 2nd anniversary of your death will light a Yartzheit candle in your memory. I am deeply touched.

We will leave for Indiana next Wednesday. Rob’s memorial service is next Saturday. We will remain in Clarksville a few days to give Cindy, Robbie, and Aaron our company and support. Tomorrow is our first day of Youth Formation at St. Clement’s and I am excited to be back in the classroom. I hope that you enjoy the noise and happiness emanating from our classroom down the hall to the chapel. Please give your Uncle Rob a huge hug from all of us. May light eternal shine upon you both. Love, Mom.

Good night, sweet prince

Dear Ravi,

At 8:21 this morning your Uncle Rob ascended into glory and joined you in heaven. “Good night, sweet prince. May flights of angels sing thee to thy rest.” He fought a long hard fight against cancer. I refuse to say that he lost that battle, but that medicine failed him. The tumors came fast and furious in the last 18 months, particularly in the past few weeks. When we saw him in August, he was in the hospital, but still sharp and working remotely. He was bright, engaging and interested in the world around him.

Do you remember the axolotl that sits on the back of our living room sofa? Your Uncle Rob sent that to you because he believed in the healing power of stuffed animals. One day, shortly after you were diagnosed, a small package showed up on our doorstep. It was addressed to you. We opened it the box up and a 3-foot-long axolotl sprang forth from the box. There was no note, nothing to explain where it came from. We were charmed but dumbfounded. I sent a picture to your Aunt Mags, a wildlife biologist, and she concurred that it was, indeed, and axolotl. I sent a picture to my cousin Paul, a veterinarian. We often send each other silly gifts. Nope, not him. Still completely perplexed, I put a picture of it on social media and asked if anyone knew where it came from. A bit later, your Aunt Cindy remarked that Rob had seen it online and thought it was cute. She had no idea that he was actually going to buy it! Mystery solved. The axolotl was promptly dubbed Rob and spent much of its time either lounging on the back of the sofa or on your bed. You loved it. After you passed, I worried that the stuffed Rob would become lonely, so he has inhabited the back of the sofa ever since. When I look at it, it never fails to bring a smile to my face.

Ravi, I want you to know this. Your Uncle Rob fought cancer with a tenacity that I have never seen before. Even in the last weeks of his life, he was still looking for another treatment or potential cure. He never gave up. He worked up until almost the very end. He leaves behind scores of bereaved people; his family, his friends, his coworkers and members of St. Albans. He will not be forgotten, he lives on in our hearts, just like you do. Please welcome him to heaven and give him a giant hug. We are traveling to Indiana early next week to comfort Cindy, Robbie, and Aaron. I believe that the funeral is next weekend. We will stay for a few days after that, just to lend support. The best things that our friends ever did for us after we lost you was just to show up. We were deep in mourning, but we never once felt alone. We want to give that support to Cindy.

It is a grey, blustery, windy day here which rather matches my mood. The day after you died was blue and beautiful. I could not comprehend how that sun continued to rise and set when you were no longer in our world. Today, it feels like heaven is crying, even though Rob is being greeted with a grand reception at the heavenly gates. My love, I miss you and I miss your Uncle Rob. Take care of each other. Until we meet again, love, Mom.

Hi Ravi!

Good afternoon! Daddy and I were out walking Gloria when we saw you flitting from tree to tree in your perky red cardinal form. You seemed to be enjoying the cooler weather. Today, Daddy and I are in recovery mode. Last night we went to the State Fair for the first time in over 2 decades. I think the last time we attended Daddy had you in a backpack and I had your sibling in a front carrier. You thought that the goats were funny. After you were able to walk, we never went back. Huge crowds of people overwhelmed you, and I was terrified of losing you. I did take Mercury to the fair when she was 5. I put them in the jogger and pushed them around the grounds. We rode the sky needle and checked out the baby animals. After an hour, they were done. Going to the fair without kids was a new experience. We rather liked it. I was not worried about anyone overheating, melting down, getting lost, throwing up, etc. We parked about as mile away and walked in. We viewed the arts and crafts and textiles building. We roamed the 4H building and looked at the kid’s crafts. Daddy found his favorite strawberries and cream and devoured them. We split a coke. We sat on a bench and watched the crowds go by, leaning up against each other. As it got later, we wended our way to the grandstand.

Weird Al was the featured performer last night. I have loved him since the 1980s when he was on Dr. Demento. If we do not own all of his albums, I am shocked. Daddy and I have wanted to see him live for decades and last night we got our wish. Al sang, danced, played the accordion and parodied other artists for well over 2 hours. The man was literally nonstop! At 10 pm he wrapped up his performance with some incredible encores and then the fireworks started. I don’t think I have been to a fireworks show since 1998. Daddy and I spent the entire evening smiling and laughing. I don’t think we have done that in years either. I guess it just goes to show you that we all have the capacity for deep grief and for deep joy. I never stop missing you, but last night showed us that it is okay to feel happiness. You were never a homebody, and you would not expect us to wither up at home either. The world is made to be explored!

After the fireworks we drifted off the grounds with thousands of other fairgoers and walked back to the car, gabbing about what a great concert it had been. This morning, we slept late. Daddy and I are introverts. Being around throngs of people takes all of our energy. Today is just a quiet day to look for you flying about while we walk the dogs. Today is a day for laundry and cleaning. Today is a time to be quiet.

Tomorrow, I have a Sunday School meeting before church and then Daddy and I are heading back to the fair with Laurie. There is an exhibition of draft horses doing barrel racing. That sounds so incredibly goofy that we just have to see it. I also want to go to the barns and see all the 4H kids showing their animals. I am not really interested in fair food as everything seems to center around dairy, but I am very curious how many fair foods can be served deep fried and on a stick. One of our friends highly recommends the key lime pie on a stick. In a world that feels like it is crashing into madness, there is something deeply human and affirming about just being at the fair. We were not ready to do it last year, but this year I count it as a blessing.

Keep flying high my son. I see you in the cardinals and the monarch butterflies. I miss you but I delight that you were part of our lives for 22 years. Love you to the moon and back. Mom.

Thoughts on Osteosarcoma

Dear Ravi,

July is Sarcoma awareness month, and it is winding to a close. We are touched by all the friends who reached out with memories of you, donated to the Osteosarcoma Institute, or just volunteered a kind word. The words thank you simply do not express our deep gratitude. There were all sorts of statistics that were on social media about Osteosarcoma. Some of them were correct and a few of them were simply very wrong. I saw one statistic that claimed that there was a 70% survival rate at the 5-year mark. Maybe this is true if the cancer was stage one. I highly doubt it. Osteosarcoma is a sneaky, devious cancer. It hides deep in the body and often is stage 4 before it is ever caught. The 5-year survival rate at that point is about 30% and that does not factor in the other cancers that may come later from treatment, the kidney disease, the heart problems, or the potential of going blind or deaf. In short, the statistics are really grim and treatments for Osteosarcoma are over 40 years old. So, we continue to fight and to advocate for better outcomes. I will always be an autism advocate, but I will also be an osteosarcoma advocate. I can wear more than one hat.

The weather is super hot and muggy. Daddy is faithfully watering your trees every night and they are doing well. I can’t say as much for the rest of the yard. I was out walking the other day and wondering what I can do to honor your upcoming second anniversary in heaven. Just then a cardinal swooped in front of me. I thought about my recent conversation with Jenn, my bereavement peer, and it occurred to me that the most useful way that I can honor you is to become a bereavement peer myself. Jenn came into my life when I was completely overcome with grief and not even functional. We meet every week and talked about all sorts of things. Sometimes we laugh, sometimes we cry Sometimes we swear a lot. Our dogs wander in and out of our zoom meetings. We share snarky texts and cute animal photos all during the week. I want to be a light in someone’s grief like Jenn is for me. I am not going to do anything before your heavenly anniversary in October, but then I will sign up for training sessions.

It’s been a busy morning. I took the car to the garage for a low tire and then walked back. I took Raya for a walk. In a little bit I will take Gloria to the vet. She has not been eating and we are very worried. Hopefully, they can set her to right. Please keep praying for your Uncle Rob. He is back in the hospital with an infection. I have a pet sitter on standby and have told your Aunt Cindy that if she needs us, we will pick up the keys and start driving. Clarksville is about 10 hours from St. Paul, and we can drive there in one day. First though, I have to get Gloria to the vet. She was your best bed buddy and she misses you. This does not stop her from bossing around the other dogs and the cat. Even though she does not feel great she is still a force of nature! I am off to wake up your Daddy and get the day moving. I miss you but hope that heaven is climate controlled. Love you to the moon and back. Mom.

Six Week Follow Up

Dear Ravi,

I have just obtained a modicum of freedom! Yesterday was my 6 week follow up appointment with Dr. Mullaney, my orthopedic surgeon. He looked at the most recent X ray of my cervical spina and said that it was healing nicely. All restrictions were lifted. I no longer have to wear a neck brace, aka the cone of shame, I can drive, and I can begin PT! I am very happy. I haven’t driven yet but I will later today. I scheduled a haircut and a facial just to make myself look and feel better. It has been months since I have been behind the wheel. I keep telling myself that I have been driving for over 4 decades and it will come back to me. Nonetheless, I will stick to our neighborhood streets and back roads for my first time out. Daddy has been a lovely and trusted chauffeur these last few months it will feel great to venture out on my own.

I had two very solid reminders of you yesterday. Daddy and I were at the running store, and an older gentleman and his adult autistic son came in for a pair of shoes. This young man did not look like you, but other than that the semblance was uncanny. He was tall, wore a floppy hat, was doing lots of happy flaps, and clearly loved his daddy. HIs gait was also just like yours. I can never quite put into words how you moved, but it was very distinctive. You were easy to pick out of a crowd. This young man moved in a very similar fashion. The store staff was so sweet to him and helped him find the perfect pair of shoes. I did not hear him speak a word, but it was clear that mouth words were not needed between him and his dad. They understood each other perfectly. He stood next to his dad the entire time, held his hand and it was clear that this was his favorite human. I thought of how you always held my hand when we were out in public, or stood as close as possible to me and your daddy. I can still feel your hand in mine, warm and solid with a firm grip. I can see you wearing one of your favorite hats, bopping along, exploring the wide world around you. The world was your oyster and you were determined to open it.

The other sign that you are still close by came last night when I was road testing my new running shoes. I took all of the dogs out for individual walks. As Gloria and I were heading back towards our street a male cardinal swooped down from a tree directly in front of us. He flew across the street, landed on a fence and looked curiously at us. Then he flew to a nearby tree. I could hear another cardinal calling to him but could not see it. I can only assume that he had a mate and possibly chicks in a nest close by. As always, family is important.

Please pray for your Uncle Rob. He has spent the last week in the hospital. Today he is moving into a step down sub-acute facility. He is not sick enough to be in the hospital but not well enough to return home. He was scheduled for 2 weeks of radiation therapy but that is being put on hold as the step-down facility does not coordinate with the cancer center. Hopefully, this will be a time of healing and rest for him. His son, your cousin Aaron has his 26th birthday this week. I can always remember both Robbie and Aaron’s birthdays. You and Robbie share a birthday, and Aaron’s birthday is exactly one month after Mercury’s.

Ravi, I miss you deeply, but you sent me two signs yesterday that you are doing well and flying free. I have a meeting this morning with an agent to talk about my manuscript and your short but impactful life. After that I will get a haircut and join Pamela for a dog walk. She is juggling multiple dogs at the moment so all hands on deck are helpful. It feels so good to be strong enough to help my friends. It is a beautiful day today, the weather is not too hot, and the air is blessedly clear. It does not hurt to breathe. The dogs are just happy to be going on walks again. A week indoors due to unsafe air conditions was enough to drive us all a bit batty. Fly free my son and I will look for you in the autism community and in the cardinals that fly through our neighborhood. I love you to the moon and back. Mom.

One Month Out

Dear Ravi,

I am now a month out from surgery and feeling better. I don’t need trekking poles to walk anymore, and I can walk one dog at a time by myself. This is nice as I am not so tied into daddy’s schedule and can take off whenever I chose. I walked 3.5 miles with a friend today, and 5 miles on Monday. I am slow but gradually gaining strength and speed. In 12 days, I will go see the surgeon and hopefully get to leave the cervical spine brace behind. I will also find out what activites I can do and what activies from which I must refrain. I have no idea if I can ever run again. As to the brace, it is hot and cumbersome, and I am tired of sleeping in it. It is doing a very good job protecting my spine, but I want to be able to drive again. I have things lined up to do when I get this brace off. I am going to go for a drive in my car and listen to 80’s music, like we used to do. I am going to the salon and getting a haircut and a facial. Then, Pam and I are going soaring with daddy. Hopefully, I will be able to look sideways again, without rotating my entire body. Lots of things to look forward to.

It is hot today and supposed to be even warmer tomorrow. If I am going to do any walking, I will have to get up early. Raya does not like the heat at all. Jack Jack can tolerate it. Gloria just charges on through, but I am careful to walk her at cooler times of the day. Nikki and Catherine are seeking out parts of the house that are in the shade.

I spent an hour today talking to Jenn, my bereavement peer mentor. She lost her son Zach to osteosarcoma about 5 years ago. She is encouraging me to become a peer mentor. I am not quite ready to do this, but I would like to help other bereaved parents. After you lose a child to cancer, your entire vocabulary changes, your interests change, your priorities change. I just want to be a kind person in a world that is often random, callous and cruel. Since it is Sarcoma awareness month, I am spending the entire month putting Osteosarcoma on blast. I am still an autism advocate and always will be, but autism is not nearly as lethal as osteosarcoma. Jenn and I doubt that there will be a cure in our lifetime, but we will keep fighting and advocating for better resources and outcomes. For my readers, I will continue to put forth this link so you can help us with better resources and hopefully, one day, a cure. Every little bit helps.

https://osinst.org/herndon-fundraiser

Today, my coach Dave Coyne is celebrating his second birthday in heaven. He would have been 70 years old today. His running club misses him here on earth, but I am certain that you and Joyce are having a wonderful time with him in heaven. Please pray for your Uncle Rob. He is recovering well from his latest surgery, but his last scan was rather grim. He is still working, mostly from bed, but he gets up every day and continues. I am in awe of his fortitude.

It is 5:04 pm and the animals are telling me that it is dinner time. There is kitty chow, dog chow, and bugs to be served. Some things never change. My love for you will never change. See you on the flip side. Mom.

Gloria has a birthday today!

Hi everyone!

This is Gloria and I have stolen mommy’s computer. Please bear with me as I don’t have thumbs and it takes me a while to type. I want you to know that I am a very good girl. I first met mommy when I was 3 weeks old. She sat down in a pile of puppies, me and my brothers and sisters, to play with us. We all played for a while and then all the other puppies wandered off, and I crawled into her lap and fell asleep. That was when mommy and I decided that we belonged together. I came home with mommy when I was 8 weeks old. I was a little uncertain about leaving my littermates, but I decided that mommy, daddy, Ravi, and Mercury were okay. When mommy introduced me to Ravi he began to cry. He was afraid that mommy would not love him anymore. She convinced him that she had plenty of love in her heart for all of us and soon Ravi and I became good friends. I miss him.

Right now, I live with mommy, daddy, Jack Jack ,Raya, Nikki, and Catherine. Jack Jack is my half-brother, we have the same daddy. I wasn’t sure about Raya at first, but we have learned to live with each other. Mostly we just ignore each other. She likes to play with Nikki, she cat. I like to play with/boss around Jack Jack. My favorite thing to do is to go for walks with Mommy by myself. Yesterday, I was trotting down the sidewalk and a funny man said, “Hi there, killer!” I was very proud. I may only weigh 12 pounds, but I am very fierce. When I am not walking with mommy I like to run around the backyard and bark at bunnies or people in the alley, chew on bones, and sit in mom’s lap. Since she is recovering from surgery we have been watching a lot of World Cup Soccer. I would love to chase a soccer ball. I bet I could even score a goal! Messi has nothing on me!

Well, my paws are getting tired, so I think I will sign off. I have bunnies to chase. I want to remind you that I really loved Ravi and that this month is Sarcoma Awareness Month. Did you know that the drugs used to treat Osteosarcoma are over 40 years old? Did you know that you can help further research and better outcomes by clicking the link below?

https://osinst.org/herndon-fundraiser

Even if you don’t contribute you can still see some fun pictures of my best friend, Ravi. As mommy always says, be a good human. I will try to be a good dog, but sometimes it is more fun to be naughty. Ta ta, Gloria.

Osteosarcoma Awareness

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.

Happy Birthday Mercury

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.