Tag: cancer

Brave Like Gabe

Dear Ravi,

Yesterday, I ran another 5km for you, and for a very brave lady named Gabe. Like you, she fought cancer bravely. She was an elite runner and ran for the University of Minnesota. In 2018 she set up the Brave Like Gabe 5km to promote exercise in the life of cancer patients and to raise funds for better outcomes for rare cancers, including osteosarcoma. Sadly, she passed away in 2019, but her race and legacy live on.

There was quite the party going when your daddy and I arrived at Como Park. Tents and balloons, streamers, signs one could make in honor of their loved one with cancer. Runners who had survived cancer wore Survivor tags on their bibs. I made a sign for you and hung it on the wall of honor and wrote #TeamRavi on my race number. There were 330 and runners in this race, most of them women. Some were fast, some were slow, but all were determined to finish this run. People ran with dogs, kids, strollers, etc. It was a moving festival which ran out into the park and around the lake. It was humid and I was wearing your Fight Like a Kid cancer shirt, which is cotton, and it very soon was drenched. I didn’t care, I was out there running for you and for everyone who is fighting or has fought this demon called cancer. I was pretty happy with my time, 32:42, with an average pace of 10:28 a mile. I was in the top third overall and 8th in my age group. I did not see any cardinals or monarch butterflies on my run, but I felt your presence. I ran into an old club member during the race and after the race the race director came out and gave me a huge hug. She has followed your story for years. There were tears on both sides. Your daddy met me right after that and we chatted with people for a few minutes, got some treats and headed home. Ravi, I was so proud to run this race both for Gabe and for you. This will become an annual tradition.

We got home mid-morning and had a snack. The dogs were anxious to go for walks, so I took them out. I had a lot of feelings to work through, and I think best on my feet. The dogs and I walked at least 5 miles. I call this grief walking. There was a huge pit of emptiness inside of me. I just kept walking. If I run and walk far enough, will I find you?

On a cheerier note, I am on the Gather committee, making St. Clement’s and other churches more autism and sensory friendly. We will begin meeting next month. There are two part time positions open to help our committee do our work. This week Elizabeth asked me to sit on the hiring committee to help choose these two people. I immediately answered in the affirmative. The only hiring I have ever done was in finding PCAs to help you and I let you guide the hiring process. You knew who you liked and trusted. Jessie, Peter, Alissa, I am looking at you. Anyway, it will be a different view being on the other end of the hiring process. I will let you know how it goes, though this will not be until early November.

Ravi, please pray for your nonbinary sibling, Mercury. They have made some bad decisions and published an essay about our family that is completely untrue. They used you for a ploy for sympathy but did not even get the part about your cancer right. They misspelled your grandmother’s name and said that we had disowned them and threw all their possessions out on the front lawn. As you know, this is patently untrue. They called a domestic on us and 4 armed policemen raided our house on what had been a quiet Sunday afternoon. That trauma still hangs with me. I did not see Mercury that day and we have not seen them since. Three years have passed. Anyway, it has been a very strange and week. I feel like we have suffered a death and a very messy divorce in less than one year. I hope and pray for reconciliation, but this is a lot for Mercury to walk back from. If they ever reach out, I will gladly answer them, but this wound will take many years to heal, on both sides.

Ravi, my love, I was so proud to run for you and to raise research funds to fight osteosarcoma and other rare cancers. You and Gabe did not die in vain. We wish you were still here with us, but please know that your name and your story still carry an impact. I am still working on getting a publisher for your first book. I look for you in cardinals and monarch butterflies. I carry you forever in my heart. 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