Sarcoma Awareness Month

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.