Honestly, I found it much easier to participate in a radio interview about Leelo than to read a My Baby Rides the Short Bus story about him to a room full of people. Jen thinks the difference is my social awkwardness, but really, I think it's because the radio interview moved too quickly for my emotions to overwhelm me, for me to be at the mercy of my raging love for my son, my fierce need to protect him, yet make other people see him.
No such luck at the Modern Times reading for My Baby Rides the Short Bus. That room, it pulsed with purpose, but also with such deeply conflicted love and sorrow. After three readings, I lost it, completely. I couldn't read when I was supposed to, had to switch places with Jen. I rallied for the Q&A afterwards, probably looked fine. But I felt gutted. And let me tell you why.
Leo has always been easy to love. He's a loving boy, free with his hugs, laughs, and vocal in his desire to spend time with the people he cares about. He wants to cuddle before he gets out of bed in the morning, wants to snuggle whenever he sits next to us, and his reaction to being pleasantly surprised is to jump up and fling his arms around our necks.
And that kind of carefree affection was not what the first three parents spoke about. They spoke about the difficulties of understanding their children, of children who didn't seem to connect at all, though they otherwise seemed so like Leo. Or they spoke of serious medical conditions and complications, of physical challenges and trials like our family has never experienced.
Even though I'd already read their stories and poems, already knew what the writers were going to read, I hadn't prepared myself to hear the stories in the authors' own voices, while seeing their eyes and watching their faces.
Still, I tried to get up and read. But I couldn't. I almost never encounter that kind of public raw, and it took me out. I started crying, started shaking. Hard. No matter how much I appreciate your stories, and how grateful I am to you for sharing them, I'm usually shielded by my computer screen or the written page. Or we're in more casual social situations, where the tone remains light-hearted even if the subject matter does not. The reality of parenting kids like ours rarely stares me in the face like that. Apparently, I'm not quite up to it yet. I'm so sorry.
Thankfully, Jen Silverman snuck up and handed me a magic pastille. Also Jen Myers took my place in the reading roster -- and her story, in case you haven't read it yet, is wittily written though not funny at all. Iz, who was sitting with me, patted my hand and reassured me, told me I'd be fine. I was, by the time Jen finished. I got up, protested that the person who had previously tried to read wasn't actually me, and tore through my story. (Which is partially about meeting Jen, and in hindsight made sense to read after the audience had already made her acquaintance.)
Here's what else happened when I wasn't in hysterics:
Iz and I rode in with one of the other MBRTSB authors, Thida. What a treat! We're going to kidnap her and bring her to Bad Moms Coffee one of these Thursdays.
The My Baby Rides the Short Bus editors, Furies, Fates -- Jen Silverman, Yantra Bertelli, and Sarah Talbot were all more luminous than imagined. They were also all at the end of individual traveling days and were very tired, though they still crackled with supernatural intelligence and energy. I wish we'd had time to sit and chat. Sigh. In another life.
The house was packed! People were poking their heads in through the door, trying to have a look. And the books sold out! (You should buy a copy.)
Iz came. Her Godfather came. Sarah (!) came. People who'd listened to our Forum interview came. Jen's family came, from several different parts of our state. Seymour couldn't come, because he was giving a talk in a different part of our state. (If you came and didn't say hi, please feel free to do so now. :) )
The Q&A after the readings was interesting. One woman said that she taught our children and thought they were wonderful. I lit up, anticipating hearing other nice things, as we rarely get positive feedback that doesn't devolve into "special angel" speak. So of course she devolved into special angel speak, asking if we didn't think our kids had a different purpose, like a 19th century missionary speaking about how the heathens they live among are touched by God. Sarah Talbot respectfully and forcefully disagreed, and I agreed with Sarah. Though I have to wonder if the first woman was using an outmoded verbal toolbox, and could actually have been saying something I'd be interested in hearing, had she used different terms.
Another woman asked about whether My Baby Rides the Short Bus included perspectives from parents of color. She said her son was already challenged by being black, now he has disabilities as well, and on top of that, she keeps getting asked whether she took drugs while she was pregnant with him (several heads exploded, after that statement). Jen Silverman explained that perspective variety was a goal of MBRTSB, and how the deadline had been pushed back several times while they actively tried to recruit authors, but eventually they had to proceed with what they had.
Which is what we all do, isn't it?
If anyone knows who that final mom was or how to contact her, please let me know. I'd love to have a conversation with her, for BlogHer.
I spoke with that woman as well Squid, and am fairly certain I gave her my card. She definitely has a story, and I would love for you to tease the rest of it out. I know I poured her a sip or two of some wine. I'll let you know if she contacts me; I hope she does.ReplyDelete
It never occurs to me that I have a different life than you do, or that you have such a different life from someone with a medically fragile or sick child. I think I generally see the wound first, and what caused it second. It makes me admire you even more that you are still moved, in spite of all you see and hear. Your inability to callous serves all of us well.
And in case I haven't told you today, I love knowing you, and at least some of how you work. Thank you for who the role you play in my family's life, and for all you do for our community.
(aka: your willing accomplice)
You are a role model to so many--and not because you are raising a "special angel" or because you are a "perfect mother", but because you are unafraid and honest and you remind us all that there is work, good work, to be done.ReplyDelete
It would be very hard to read things I've written about my son out loud to actual people. Even harder to keep from clocking the "special angel" people. Ugh. Emotional roller coaster for you that day. I hope you managed to let the fizzes settle. And that's great about your book sellout!ReplyDelete
One thing I've learned is that when the real events of our lives become a "story" read in public, there is a kind of pathological detachment that is necessary. It's not good and it's not bad, it's just what is. But that detachment does not change who we are as real people, or who are children are in real life. I'm sure you did grand, and I'm so glad the book is getting the recognition it deserves. Now it's all about the work, having a life of its own.ReplyDelete
I heard you speak on NPR, and was very impressed and moved.ReplyDelete
I work with children on the spectrum, and of course I fall in love with my clients-every child is unique and charming in his/her own way, even when they are so challenging that at the end of a day when I am covered with spittle I wonder what the heck I am doing and yearn for a cubicle job wherein I can cruise the Internet all day.
it is so easy to fall into the 'angel' mindset, which of course does not respect how incredibly difficult it is to parent special needs kids.
I just had my first child 3 months ago, and have a completely new respect and sorrow for the parents of my kidlets, because as much as I love my clients, I would be lying if I didn't admit that I will be heartbroken if my son ends up being diagnosed.
Thank you for being so courageous in sharing your life with us. I am sure it helps much more than you can fathom. Good luck to you and your sweet boy.
Jen, please do find her info! I'd be so grateful. And *mwah*ReplyDelete
Kristen, thank you. The more I get to know parents like you, Jen, Emily, and Vicki, the stronger I feel, and the stronger I think we can all be.
s.a., thank you for being a frank but affectionate fan of our kids. Good luck with that new baby! NOM!
I just finished reading MBRTSB in the privacy of my own bedroom, and I wept at almost every story; can't imagine reading my own in public, although I never think of our family or my son as a sad case.
The stories are so different, and yet so similar in an elemental way, that each could easily be one's own; I don't wonder that you choked a bit. I commend all of you for putting your stories out there both in print and face-to-face.
Leelo sounds a great deal like my own SquidBoy--how ironic is it that that's his nickname?