“The wheel is turning and you can’t slow down,
You can’t let go and you can’t hold on,
You can’t go back and you can’t stand still,
If the thunder don’t get you then the lightning will.”
~ The Wheel by the Grateful Dead
I’ve probably quoted that before in this blog. A funny fact is that I’ve never read my blog straight through from beginning to end. I could be repeating quotes, stories, ideas…hell, all kinds of shit.
Well it appears our 15 minutes of fame are over. Jonah’s been swept off the top ten stories of HLNtv.com by famous people and real news. And here I’d dreamed of some publisher happening upon our story and offering me an advance of $25,000 to edit the blog into a book…but not a one has materialized, thus far. Heh. I did, however, connect with all lots of amazing new people. People just like me. And supportive souls. And adults on the spectrum. We’re all in a magical, leaky, strangely expanding ship – the S.S. Autism.
The whole experience, though, was a jolt of affirmation I really needed. (I thrive on affirmation; it’s damn near Pavlovian).
The thing is someone gave me a chance to tell my story, and I’m grateful for that chance. Thank you, KC.
But the wheel turns, and comes a time for things I don’t want to think about. Jonah’s first visit to a rheumatologist in this area on Friday, and, on Monday, exploratory eye surgery. I pray to God those same two awesome people who drove him up last time, E and J, will be there. With them everything will be okay. It will be okay if Jonah kicks and it will be okay if I burst out sobbing and I don’t have to worry about keeping it together because they will help, they will know what to do and what to say and how to navigate the whole mess. They have compassion and knowledge and heart, these people. They love. Thank God, they love.
Because without them I’d fall apart again. I can’t stand the thought of Jonah scared. In pain.
I remember holding him in my arms for his first eye surgery, when they implanted the Retisert – how he looked at me with this deep, intense fear in his eyes as I placed him on the operating table…how I watched him go limp-that-looks-like-dead as the anesthesia took effect. I kept it together long enough to look the surgeon in the eye and whisper “please help my son.” She held my gaze and promised me, silently, nodding.
I remember closing the door and flattening myself out against the coolness of the wall on the other side. Telling myself to breathe. To trust.
Throughout these last ten years I have entrusted my child to so many people. I am so lucky, so grateful. I trust and I trust. To do anything else is to deliberately envision (create?) a worse reality. At least with trust there is hope.
“You must trust and believe in people or life becomes impossible.” ~ Anton Chekhov
The Never Normal 