worthy

~

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.

6/2/11

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.

*

Not Wrong

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.

“Of course.”

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?”

“I did.”

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.

26 thoughts on “worthy

  1. Good job, Jess! The petition is signed. Thank you for giving me the opportunity to do something to make this right.

    Love you,
    Mom

  2. I will sign. Just to let you know, we were denied life insurance for my son because he is on the spectrum. They would cover my husband and myself, but not him. This makes me think as to what else he may be denied in the future.

  3. It is not as though I intend to incense the community, because I myself am very attached. But, there is a bit of background here that makes this more than just an autism-related issue. Thousands of people die every year waiting for organs. There just aren’t enough to go around. So, unfortunately, doctors have to make decisions about who is most likely to get the most use out of that organ. The story mentions autism, but also comorbid mood disorders. Psychiatric conditions (from bipolar disorder to anorexia) have long-been prohibitive in the the transplant system because people dealing with those conditions often do not have the mental strength, or physical support to deal with the lifetime of healing. They are also far more likely to self-harm or commit suicide.

    My point is this: it sucks. I don’t like it any more than anyone else. But I think the solution is to encourage more people to be organ donors so that doctors aren’t put in these impossible positions. If there were enough organs to go around, they wouldn’t have to consider things like who is the biggest bang of the buck and who has the highest likelihood of living the longest with that organ.

    I hope this doesn’t come across as my defending the situation because it absolutely stinks. My son is on the spectrum and I deal with frequent depression and I can’t image what they are going through knowing that those things make them less-than-ideal transplant candidates.. My point is that if you want to make a difference, advocate for everyone you know to be an organ donor so that there is no reason for these decisions in the first place

    Here’s the government website to sign up to be a donor in your state: http://www.organdonor.gov/becomingdonor/index.html

    • You are absolutely right, it’s a horrible situation and organ donation is so important. Hopefully, this story should encourage more people to become donors, so many lives could be saved, not just those who desperately need the organs, but the families who love them and have the blessing of more years together.

  4. Jess, this was a beautiful post when I read it this past winter, and beautiful to re-read again now. Thank you. I too was so saddened when I read this news, signed the petition, wish I could somehow do more (and I have signed the organ donor card on my license).

  5. I saw this last night, and I signed, and shared. This is heart breaking. I can’t even imagine if it was Cymbie. Different, not less! I’m praying we get the message across. It’s already gone viral. Your platform and the power of numbers will help our voices to be heard. We’ll change the world. One person at a time if we have to. And make it a better, more tolerant, and peaceful place for all of our kids.

  6. So sad for Paul and his family….. So sad for all of us…. Thanks for a wonderful post, and re-post (that made me cry AGAIN)! I wish I could sign the petition a million times, but I pray my one is helpful.

  7. I LOVE this….

    “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.”

    Thank you.

    And the petition is signed… and will be shared. It needs to be.

  8. My daughter is autistic and schizophrenic. We live everyday knowing she lives in a world that won’t help save her should she (and I pray she never does) ever need something like this. The schizophrenia alone makes that a reality, the autism makes it a double whammy. My girl is non violent, non aggressive, and flourishing with her therapy and services. I understand that there are more people needing transplants than there are organs to give but I cringe that the doctors get to decide who gets a chance to live and who doesn’t.

  9. What a beautiful post!! We recently went to see an autism specialist who first diagnosed Hunter for a follow-up (what’s happened after 14 years) visit. She watched us interact and finally, about 3/4 of the way through our appointment, said to me, “You are so in sync with him”. Yes, after 17 years, I have mostly learned the language of Hunter and it a wonderful thing to connect on their level, where they are comfortable and can be themselves.

  10. Signed it…. this is sickening. When my brother was 28 years old he collapsed in the shower after a cerebral aneurysm ruptured. After surgery and many complications he was pronounced “brain dead” and my parents had to make the painstaking decision of whether to have his organs donated. It was an excruciating decision, but they decided to do it because of the hope that other families may be helped in some way by our tragedy. And now, 16 years later… I have a 5 year old son that is autistic, and I am heartbroken that this young man has been denied to be placed on the transplant list because of autism. Just heartbroken.

  11. I signed it! My Autistic Grandson is 3. He’s smart and fun and just as important as anyone. We must not allow these decisions to be made based on their Autism!

  12. Thank you for writing this story. What a beautiful picture of the love of a mother. My son is going to turn 18 in October and he too has autism. He blesses my life every day – I cannot imagine who I would be without him in my life. While he is able to verbalize now, he really struggled with it and we too have a language all our own. You are a great mother. If all else fails just rest in that knowledge. While your little girl no doubt blesses your life – she is blessed to have you for her mother.

  13. Reading this is very informitive. My son has autism he is 13. I now worry if anything happens to his heart. I am a stay at home mom and my husband works…. but no health insurance.So this is twice as scary.I pray for Paul and his family. Paul will alway be in my heart and in my thoughts
    .

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