I can’t remember a time when I had such two momentous events in such a short span of time. The book launch a week ago was a bigger threshold than I expected and not in the way I anticipated. Somehow with all of my eagerness for the publication and launch, I didn’t think about how afterwards I might doubt myself and feel like I had a burning scarlet NGE on my chest. NGE stands for Not Good Enough. When I started the Sarah-Rise program, I started writing email updates to my immediate family and best friends. As that list grew I had to pretend I was still writing to the small group to try to stay true to myself and my voice. As I expanded to a blog and then made it something people could sign up for without my involvement, I struggled to figure out how to share things in the same way because I felt like now I had a potentially bigger audience but wanted to keep sharing as if it was still small. Now with the book at large, I find myself rather obsessively checking to see if there are new reviews, feeling frustrated by some reviews where the reader didn’t seem to read carefully. But it’s out of my hands now. In terms of my weekly updates, I still compose them in my email browser and sometimes write, “dear lovely readers” as I used to, because that helps me get into what feels like a cozier more private mindset, but then I’m so aware that anyone anywhere could read what I write, which is an honor and can feel like a lot of pressure. I like to do things right! And it’s hard to give up the illusion of control that I can always do so if I try hard enough.
Needless to say, I have had a lot of big feelings this week. As always, my mom leaped into the trenches with me to listen for as many hours as I needed an ear. She and my brother are my defense attorneys for when I am prosecuting my own self. They didn’t realize they were part of the same firm, but they are. Elizabeth Fein, who has always listened attentively and helped me to figure out who I am at the moment, also helped me navigate this new territory. Elizabeth’s book Living on The Spectrum: Autism and Youth In Community came out a few years ago, so she has already navigated writing about autism and having those words be printed for all of the world to see and judge, even though all I see in her words is an incredible testament of love, respect, and representation. She is also in a band called Take Me With You (if you are in Pittsburgh you can see them live at Mr. Smalls on Feb 13. I’ll see you there!). So she has been in the public eye for longer than I have and has thought about these things and maintained her sanity. She helped me think about how I might want to shift things as I move forward, while compassionately listening to all of my feelings about everything. I still feel a bit uncertain as I go forward, especially as I prepare for more book events in Philadelphia. I’ll be at Main Point Books (Wayne, PA) with Nancy Schwartz (Up, Not Down Syndrome) on February 8th at 6:30pm, I’m doing a bookclub visit on February 9th, and I’ll be on a Harrisburg morning tv show (Good Day PA) February 10th at 10am. That last one is especially thrilling and terrifying. Will my eyebrows even show up?! They already don’t make much of an appearance on podcasts. I’m not one to usually concern myself with eyebrows or hair, but suddenly I’m telling myself not to wear a hat before a public appearance so my hair isn’t squished and to remember to use my little eyebrow mascara-type thing so my eyebrows show up. Egad. Who am I? I jest, and I’m also totally in earnest about this. I will just keep coming back to the picture from my launch of me with Elizabeth, when I got teary trying to say that we called our program Sarah Rise, and Elizabeth is beaming love at me, reminding me that maybe it’s ok to be my messy self, eyebrows or no.

The other huge occurrence that we just commemorated was Sarah turning 18. I don’t understand how that is possible even though I have been there witnessing all of those years. We rented out Atithi Studios and had the Bandits on the Run come from New York City to play. Sarah’s bus driver drove her to the party. I made so much cake! Sarah had been asking for months to have a cake with the Dog Train cover (Dog Train is a book and music album by Sandra Boynton), so I asked Amy to decorate the cake. She is extremely talented at looking at a picture and recreating it. Even though I know her skills with markers and paper, I was astounded by what she did with fondant, frosting, and edible paint. Instead of writing the names of the various singers for the album, as the original cover has, Amy wrote Sarah’s name in that space. So brilliant and inspired! During the party she provided face painting services, having already created a beautiful musical staff across her own visage. It was incredible to have so many people from Sarah’s life in one place, many of whom had also come to the book launch.

For the party, the Bandits on the Run, which is normally a three-person band, became a four person band starring Sarah!! We didn’t expect that. I don’t think any of us did, including the Bandits or Sarah. We had planned to bring her small yellow guitar and asked them if she could be up on stage with them for one song. That is how it started, but then she stayed up there for the whole set. Everyone was having so much fun, especially Sarah. She was singing and playing and smiling. Who would have ever thought, when Adrian used to bring his guitar for Sarah-Rise sessions, that 13 years later they would be on stage together rocking it so beautifully. I don’t think we can ever top this as a party or an experience for Sarah. Words do not do the moment justice, but how can words touch one of the biggest bestest happiest experiences ever? The Bandits even made a special tour poster that they signed, and the first stop on the tour is Sarah’s 18th birthday.

After the birthday party concert extravaganza we went home to nap before Sarah had her Birthday Bash Sleepover with our sitter Anna. They watched the movie Turning Red and had soup dumplings for dinner. A good time was had by all, and Sarah is taking another long nap to recover after so much amazingness.
Lots of love to all of you.
Leave a Reply