I feel like I do this a lot. That I tell you that there are so many things that I want to tell you – that I would tell you – if only I had the time. Of course it’s a nifty trick, this. Because by telling you what I wish I had time to tell you, I sneak in telling you. Well, sort of.
It lacks the detail, the perspective, the dare I say – art that I try to inject into my writing. At the very least, it denies us both the beginning, the middle and the end that us structure-craving types really like. But alas, here we are again. Standing at the crossroads of Desperately Overwhelmed and Mama’s House of Cards – and I have no choice but to tell you what I wish I could tell you – straight; no chaser.
So here goes ..
I wish I could tell you about the conversation that I had with Katie in the car the other day on the way to skating. The one where out of absolutely nowhere (or so it seemed at least), she said, “Mama, I really wish you wouldn’t be so hard on yourself. It’s not your fault, you know.” And I wish I could tell you how her words, even hanging there in their contextless vacuum, took my breath and how I had to hold tight to the wheel and make sure not to swerve into the trees.
I want to tell you how I said, “What do you mean, baby? What’s not my fault?” And how she said, “Everything. You can’t be responsible for everything. It can’t all be your fault.” And I want to tell you how it led to an amazing conversation in which I taught her a little about personal responsibility (that there are things that we are responsible for) and she taught me even more about, well … life (and self-preservation) and how she told me that she just didn’t want me to be sad so much and it made me, well, kinda sad.
I wish I could tell you how I told her that she is my greatest teacher and she told me that that’s backwards and how we agreed to a 2/3: 1/3 deal on the teaching and learning front but how I knew I was lying because as much as I teach her, I learn exponentially more.
I wish I could tell you about my friend Alysia’s labor of love – the SenseAbility Gym. Go ahead, click on the link. I’ll still be here when you get back. I wish I could tell you how inspired I was at her fundraiser the other night and how while listening to her talk, I really, truly believed that we – me, you, all of us – can make our dreams for our kids REAL.
I wish I could tell you how proud I was of Katie as she manned the Sensory Education Table at the fundraiser with Alysia’s son, Gerry and how much pride she took in explaining how each of the tools there made a difference in the lives of those with Sensory Processing Disorder.
I wish I could tell you how amazing it was to listen to her yammer on a mile a minute on the way home, telling Luau and me about how she had convinced someone who was waffling to buy a piece of equipment for the gym. How she had said, “Mama, I told them how the hammock swing had changed my sister’s life and how if they bought it for the gym, they could change someone else’s life and then THEY GOT IT, MAMA!” or how I caught sight of her earlier in the night with another couple whom she’d also charmed into buying something saying, “Thank you SO much. You’re doing a really good thing.”
I want to tell you how she sounded so sincere and so mature and how I just wanted to scream, “That’s my kid!”
(And how when Alysia was talking about the gym – about this incredible place that she seeks to create – that she WILL create – I wanted to scream, “That’s my friend!” because I was so damned proud of her too. )
I wish I could beg you to donate because they need $38,000 to open their doors, but once they do they can ultimately be self-sustaining and you’d get to be part of this amazing thing and well, how cool is that?
I wish I could tell you about how hard that night was because for the first time ever, Brooke said, “Me too.” Because she wanted to come and I knew – I knew that we could bring her but it would be torture for her. I want to tell you how I struggled to make the right decision – how I had no idea if there was a right decision.
I want to tell you how she cried and yelled and hit herself in the face. I want to tell you how it all but destroyed me because there is nothing worse than watching your child hurt herself.
I want to tell you how I DID NOT KNOW WHAT TO DO. I want to tell you how I tried to explain that kids weren’t going to be there but how that didn’t make sense because Katie was coming and how ‘she’s working there’ had no meaning. I want to tell you how I knew – I KNEW that it would be awful for her – how I tried to tell her about the crowd and the noise and the full-to-the brim church function room and the total and utter lack of escape. I want to tell you how we debated taking two cars and bringing the iPad and the headphones and how it just didn’t make sense to bring her somewhere so challenging when she could stay home with Julie and do whatever she wanted.
I want to tell you how we finally convinced her that staying behind was the best plan but how I was overwhelmed with guilt. I want to tell you how I asked Luau if we were making the decision that was best for her or easier for us and how in the end I had to admit that it was a little bit of both and how that felt like crap.
I want to tell you how when we were there and the room was hot as hell and filled with wall to wall bodies and there were no chairs and there was no place to hide and Katie looked at me with wide eyes and said, “Thank God we didn’t bring Brooke,” I knew I’d done the right thing but how it still didn’t feel like the right thing at all.
I want to tell you how Brooke didn’t sleep that night. How she melted down in her bed at 11:15 and how she was in the circle – the dreaded God forsaken circle – the circle of “I’m crying because I’m sad. I’m sad because I’m crying.” Rinse. Repeat. Start again. That circle. And I want to tell you how it broke my heart because I knew why. I knew that we had left her behind and THAT was why.
I want to tell you how I brought her into my room with me and how we cuddled into the night – long after Luau had fled to the upstairs bedroom knowing one of us would need to be rested for the day ahead. I want to tell you how I guiltily loved being so close to her and how much I hated the reason why she was there.
I want to tell you how we’d promised we’d go to the fair the next day and how she perseverated on it as she cried. “We will go to the Big E tomorrow,” she said. “I’m crying because I’m sad. I won’t cry at the Big E.”
I want to tell you how she loves fairs. How she lives for roller coasters and fun houses and flumes. I want to tell you how she loves petting sheep and cows and goats and how she interacts with them in a way that makes me see her on a farm. I want to tell you how she sat down next to one of the sheep for a while and curled her fingers into its wool. I want to tell you how calm she was – right there in the middle of the madness of the animals and the people and the fair – how calm she was sitting next to that sheep with her fingers in its wool.
I want to tell you how she loves to eat popcorn – but only the yellow pieces – or how she loves buying Sno-cones she doesn’t eat and lemonades she doesn’t drink. I want to tell you how the Big E is the mother of all fairs and how, after Saturday night nothing would have kept us from the roller coasters and funhouses and cows and sheep and uneaten Sno-cones on Sunday.
I want to tell you how my heart is breaking for Katie. How I’ve been writing these great things about her – about skating and the fundraiser and about being interviewed and golly gee whiz, ain’t it all unicorns and rainbows because I’m trying desperately to do what I told her yesterday morning that she MUST do – to focus on the positives in her life. Because as much as I want to tell you all the rest, I don’t want to tell you about the 4am nightmares and the e-mails to the staff at the middle school and the helplessness that I feel right now in not being able to make things easier for her.
I want to tell you how Kelley Borer, the director of the Autism Speaks Boston Walk, reached out to me to tell me that she wanted to create a tent especially for the newly diagnosed. I want to tell you how she asked what resources I would have wanted back then – what would have been helpful. I want to tell you how it was all I could do to keep it together because, my God, how amazing is that?
I want to tell you how I reached out to friends for their feedback because I’m so far out over my skis right now that I just can’t do even one more thing and how they came through – how they always come through – and how the tent is going to be a thousand kinds of awesome now. I want to tell you how I need YOU to help with one of my big ideas for it. How I asked Kelley to set up a local mentoring program of sorts and she was all for it but how it won’t work without US.
I want to beg you to sign up as a mentor (or a mentee if you’re new in THIS proverbial tent) if you’re even remotely local to Boston. I want to tell you how we’re looking both for parents of kids on the spectrum and autistic teens and adults to sign on to buddy up with the newbies. I want to implore you to contact Kelley at firstname.lastname@example.org if you’re even a teeny weeny little bit interested in connecting and helping and creating a real, live, in the flesh community (and / or if you can help man the tent for just a few minutes next Sunday, the 30th.)
I want to tell you that the commitment is only what you decide to make it and to say please, please do this because it matters. I want to thank Kelley for reaching out and for so thoughtfully putting this together.
And I want to tell you so much more, but some of it is just too big for this post and some is too small and regardless, it will all have to wait. Because the truth, my friends, is that I’m struggling to make it from one day to the next this month. Because September is hard. And it turns out that September in an election year, when you’ve insisted on being in the mix, is even harder. And when our babies are hurting, well … it’s just hard.
So there it is.
What I wish I could tell you.
If only I had the time.