Last night was hard. For a lot of reasons. But after an evening of reasons, one nearly broke me.
I read the story of Paul Corby. According to Strollerderby, Paul “has Left Ventricular Noncompaction, a rare, congenital disorder in which part of the heart muscle appears spongy, or “non-compacted.” The heart is less able to pump blood throughout the body; Paul’s “ejection fraction” of blood through his heart is only 20 percent. Strokes and heart failure are common prognoses. Paul has had three mini-strokes already.
Paul now takes 19 medications a day, most of which are to try to stabilize his heart. The only cure for LVN is transplant.
Paul doesn’t drink, or smoke. He is an otherwise healthy 23-year-old man. And yet, he has been denied placement on the national heart transplant list.”
Paul is autistic.
Dear Ms Corby,
You have requested a clarification of our telephone conversation from 6/2/2011. Below is my documentation of our phone conversation. Please call if you have any questions. I understand your concern for your son. If you want to pursue transplant consideration for him, you of course have the option of a second opinion at another center.
I spoke to Ms Corby today to review decision re whether or not I would recommend transplant for Paul. I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior ..
I wanted to pull the covers over my head and make the damn day disappear. I wanted to make a world that would deny life-saving treatment to another mother’s son go away.
But I couldn’t. I can’t. Because in the morning, my baby girl would wake up to that same world. A world that tells her in so many ways that she is other. That she is less. That she is wrong.
That she would not be worthy of saving.
I pulled my computer onto my lap. I opened it to Diary. I searched for the one word that I knew would take me where I wanted to go – needed to go. And I read the post that I’d written in another haunted moment.
My baby girl is not less.
She is not other.
She is not wrong.
And I will do everything in my power to make sure that she knows it.
Every day of my life.
December 28, 2011
Gratuitous picture of my girl that has nothing to do with the post you’re about to read
Brooke and I are cuddled in her bed. It’s getting late and at least one of us is nodding off. I’s time for me to go.
“OK, baby,” I ask, “who’s picking the number?”
“You would do it,” she says.
“OK,” I say, stroking her hair absent-mindedly. “Let’s do twelve.”
“And one for good luck,” she adds.
I smile in the darkness.
We-ve been doing this is one form or another since she was five. Since the day that she asked me, “In how many you go?” and held up her little hand, fingers splayed and asked, “Do you go in five?”
Over the years, we’ve toyed with the ritual. We’ve giggled over numbers like 17,436,812 – “Too big!” and made up numbers like a hundred million million quillion – “Way too big!” We’ve played ‘Too long” and “Too short”. She’s counted and I’ve counted. We’ve counted together. We’ve counted up and (particularly when we were working on early subtraction) we’ve counted down.
One night, we had decided that it was a count together kind of night. But Brooke didn’t seem to be counting. When I reached fourteen, apparently alone, I asked her what happened. “I thought we were counting together,” I said. “I did it,” was her only response. I left it alone.
The pattern persisted. She agreed to count together. I counted alone. She said we HAD counted together.
I knew I was missing something.
So many times we get frustrated with our kids. A teacher says they’re not listening or ‘paying attention’ because their eyes are elsewhere and their bodies remain in perpetual motion. My girl listens best when she’s moving – it eliminates the need for the supreme effort that it costs to keep her body still and leaves her the energy to focus – even though focused is the last thing you might think you see when you look at her.
We get angry because it seems our kids aren’t listening, when really, they’ve taken in every last word – along with every click, tick, hum of the lights and sigh of the radiator all at the same time. But because they’re not making eye contact, we assume they’re not listening. It takes a long time for adults to re-learn that eyes are not ears.
We ask for a response and get frustrated when we think we don’t get one. “Honey,” we say, “I asked you a question.” But perhaps the response came, it just didn’t come where we were looking for it to land.
I knew I was missing something.
One night, I asked her to start counting without me. I promised to follow. Then I laid perfectly still and listened.
And there it was – a faint scratching sound on the comforter.
She was scratching out the numbers with her fingernails.
Two more nights and I was sure.
“Baby, did you scratch out the numbers on the blanket?”
Over time, the scratching turned into rubbing and the rubbing turned into tapping.
One day I asked if I could tap the numbers too.
Now, every night, we choose a number, she grabs my hand and says, ‘We would do the tappies.” And we do. Together. Nothing makes me happier.
The world demands that we interact with it in its own language. A language that Brooke does not instinctively speak. Day in and day out, she must find a way to function within it. To translate nearly every thought and feeling and impulse and mode of communication into something else – something ‘expected’ and ‘acceptable’ and ‘intelligible’ to everyone around her.
I am so grateful for the moments when none of those machinations are necessary – the fleeting instants in which I can, in my own way, tell her that I get it. That there’s someone in this world with whom she can speak her own language and be understood. I wish I could do so much more of it than I currently can. It is a gift to both of us.
I had an e-mail exchange about disclosure yesterday with a young woman on the spectrum who I greatly respect. In her e-mail she said, “The only time I’ve ever not felt disabled and wrong is when I’m with other Autistic people.”
I want so desperately for my girl to have access to others who speak her language instinctively – who have shared her experiences and who are able to understand her from the inside out. She deserves nothing less. But so too, I shudder at the thought of that being the only time and place that she ‘doesn’t feel wrong.’
As I went to bed last night, I thought of her words. And they haunted me. Home, I thought. Home is the place that my daughter – or anyone’s son or daughter, child or adult – should feel ‘not disabled’ and God-forbid, not ‘wrong.’
I had trouble falling asleep. And then I thought of the tappies. And as I pictured my girl and me, hand over hand, tapping out the numbers in her language, I hoped that in some small way, I might be showing her that she’s not the least bit wrong.
Please sign and share the petition on Change.org to help save Paul Corby’s life. Thank you.