19 months

Dear Ravi,

I meant to write to you two days ago, but our internet was down. I thought of you, as I am always thinking of you, on the May 11th, 19 months after you left us. Today I am thinking of our dear cousin Joyce, who was an unstoppable force of nature. Today, she is celebrating her 11th anniversary in heaven. I am positive that you and she are running around heaven with a pile of pets causing “good trouble”.

The dogs have been raising a lively racket this morning as the internet technician has been in and out of the house numerous times. The cat has decamped and probably will not come out until dinner. He is a peace loving creature, except when he decides to ambush Jack Jack who then screams dramatically. At any rate, we have internet services again, but at a much higher rate than we did a few days ago.

Your Uncle Rob has come through both of his surgeries, but not without a lot of pain and an Addison’s crash. The surgeon reported that there was not much left of his his femur, it was more like a wet sponge than a bone. The tumor had also grown significantly since his last scan, 3 weeks ago. Please continue to pray for his healing. Pray for calm and strength for your Aunt Cindy.

I am moving slowly today but looking forward to a walk with a friend. Like us, he is very peripatetic and thinks best on his feet. We can walk and talk for hours. Often, our conversations are about autism and advocacy. We both feel strongly that there is not enough attention given to adults with severe autism. People seem to forget that autism lasts a lifetime, one does not age out of it at 22 when services end. One does not ride away from their struggles on a magical unicorn. The struggles continue and usually only the direct families see it. Caretakers are lauded for being “brave” or “self-sacrificing” but are never given a break or the slightest semblance of respite. I was planning on going to AUSM Steps of Hope this Sunday to advocate for better services, but my neck is not letting me drive anywhere so I will go to my last day of Sunday School instead. I loved teaching Youth Formation this year and definitely plan to do it again in the fall, as well as working on the Gather committee. In these ways, I will honor your memory. I am also thinking of doing a fundraiser for the Osteosarcoma Institute on your 24th birthday. I will ask people to donate $24 in your memory and do something kind for someone else. I got this idea from Jen and Jon, who did a very similar thing to celebrate what would have been Zack’s 21st birthday. Since I got a haircut that day, I tipped my stylist 21% in his honor.

I am on the surgery waiting list in case an opening comes up before June 11th. My goal before then is to keep my body in as good shape as possible so hopefully my recovery will be a non-issue. All I remember from my last surgery was that I slept a lot, and you and Gloria thought that I was really boring! Sending you and Joyce all of my love. Hug Rosie for me, as well Sadie and all the other pets we have loved and lost. Love you forever, Mom.