The Telling

writershavenI am sitting in a loft in the beautiful Writers Haven, in South Haven, Michigan, overlooking Lake Michigan. For the first time since I gave up on a graduate program in creative writing, I am dedicating time just to writing. I spent money and unfathomable emotional capital to give myself two days here. It is fantastic, and it is scary.

From the outset of this blog, and long before its existence, I’ve wanted to write a book about what’s happened to my family since Sammi was born. Every child changes the family they are born into; we want that, or we wouldn’t have children. Sammi, though, brought with her such shattering and foundational changes to our dynamic and to our daily life that I absolutely can’t remember what I ever expected before she was born. What did I think our life would be? Did I even know?

Children with health issues are not news, not really. There is always a heartbreaking story to read about a child with a disease or a chronic condition. These stories tell us something about perseverance, or hope, or preventable tragedy, or miracles, or change. We know that our hearts will move with these stories, whether they are soundbytes in our social media feeds or heartbreaking book-length memoirs, and if the particular medical issue has touched our own lives, we nod knowingly, or call our family and say read this. Someone else gets it.

So, why another story about hospitals and illness, and a mother’s love? Why, after all this time away from my love of wordcraft, is this the story I want to tell?

This is what I have been pondering as I prepared for this retreat. How can I hone the shape of this story so that it says something new, something the world needs to hear more than that poor child, that poor family?

I began writing what is taking shape as the book before I knew how it would end — a common path for a fiction writer, but not for a memoirist. I took pieces of the blogs I wrote in Sammi’s infancy and sliced and merged them into the first third of her story. I kept going, moving the shapes and adjusting the tone over and over, and then, as the real-time story came to climax, I stopped. It was so painful to look back and see all the avoidable things that had happened, to read about my state of mind and know that it could have been helped. I couldn’t look at the history and not want to reach through and grab white coat after white coat and say LISTEN.

Listen. Listen!

And so I stopped again as we crested the next wave of medical drama. I thought perhaps the writing had been therapeutic at the time, and maybe I just needed to stop. Maybe this story wasn’t for a book. Maybe I used it to reach out at the time, to find my tribe, to feel heard, and now, having solved the problem of my daughter’s health, I needed to stop letting it define me.

But.

I look back at why I started a blog in 2006, home alone with this ambiguously sick baby. I didn’t know why I felt silenced, but I did. I felt silenced by family members who expected me to love having the choice to stay home with my daughters. I felt silenced by my isolation, required to keep her safe from germs. I felt silenced by other parents who couldn’t bear to listen to me. I felt silenced by doctors who told me that my panic over her health was really just postpartum depression. I didn’t like the silence. I raged against the silence, out into the world of early blogging, and I said we don’t talk about this stuff enough.

So now, before I finish the story of Sammi’s rise from the ashes here on this blog, it’s only right for me to tell you about the silence I hate most. This silence exists for so many reasons, and will persist unabated in the system we’ve created, unless more people rage along with me. Here’s the silence I resent with a poisonous heart, a poison I can only drain into my keyboard:

I hate the silence of blind trust in doctors, by myself and by them.

Over these years, I have swallowed that silence in emergency rooms acquiescing to another blood draw. I have swallowed that silence in clinics, having a protocol explained over the head of my daughter who, I knew, exhibited too few of the symptoms for the disease with which she was diagnosed. I have swallowed that silence at her bedside in a recovery room as another resident asks the same forty questions over her limp body, never dropping eye contact as I hand her the cup and straw and say no, no juice, just water, she can’t have that.

I swallowed that silence in the falling action of accurate diagnosis, when no one once called to apologize, to check, to connect with her or me after years of puzzling together.

Mothers are universally accepted as imperfect. We joke about it, we wear ironic t-shirts and admit to heavy reliance on the tv and one-more-minute answers to urgent questions. We admit it, and then everyone agrees, yes, mothers, ha-ha, they’re barely holding it together.

No one ever hears a doctor say, “oops.”

There are no pithy t-shirts about missed stitches or accidental sponges left inside a patient. There are no doctor memes about sending a patient his neighbor’s test results by mistake. I have spent hours, days, weeks in the presence of doctors, and never once has one said to me, “We got that one wrong, didn’t we? I’m sorry.”

Doctors don’t admit to misdiagnosis, and we don’t talk about it, but there are at least three people involved in the medical relationship when a child is the patient. That silence belongs to the adults. That silence was heaped on me, piled on me, over years of parenting a child with a medical mystery.

That’s the story, then. All the cascades of quiet mistakes, unnamed because doctors don’t admit to them, certainly not to the mom, the silly mom, the emotional mom, the overwrought hormonal mess of a mom. That’s the story. The details have all that heartbreaking heaviness, and at the root is a child, but growing from that root are the intertwined branches of a silence that could have killed her.

She could have died from that silence.

I’m going to do the telling, here and in the book that has been soaking in that silence for ten years. If you want to stay connected to this story, and this work, and keep pulling the silence out of the air, please subscribe to the blog, follow me on twitter, write to me and tell me your story.

If you are an agent, or if you know an agent who might be interested in this story, please contact me.

sammi

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7 thoughts on “The Telling

  1. Wow, such a powerful post! You touched on so many themes! Keep the flame going for your memoir! I know what a battle it can be! (I love your idea of a writer getaway, I have done the same, albeit for just one night! You are brave, LOL!) And “silence can kill” is a universal theme, and on so many levels, go with it!

  2. It takes enormous courage to do this, to tell this story. But it must be told, with all the poison draining into the keyboard, to break the silence and awaken the rest of us from the blind trust that could kill. Thank you for your courage, for being willing to break the silence.

  3. Wow!! I cant wait to read more. This blog post was so intriguing.

    • As the mother of a child with pretty mild medical issues, I always struggle to find the balance between telling the whole (not so long) story while the MDs eyes glaze over vs assuming they’ll read the chart. Your post is a stark reminder of how we have to act as “general contractor” for our children’s medical care. Once you get clarity around what is going on and she’s getting appropriate treatment, please reach out to the hospital ombudsman, the board, and anyone else who will listen. There’s no excuse for her doctors not to have read her chart, and the result was want uneccesary and inappropriate tests. Hoping for a good outcome for you guys!

      • We’ve been thinking quite a bit about how to respond to the hospital and gastroenterology practice. We’re now two years out from this initial conversation and could not have a more different child in regard to her health. The time may come for us to do as you suggest — we’re still wrestling with enormous frustration and mourning the life she could have had if her real issue had been recognized earlier.

  4. Hi Debi,

    I’m looking forward to hearing the end of the story. I have a 2.5 year old and his story shares a lot of parallels with your daughter’s. I’m tired of being treated like the silly/emotional/hormonal mom by doctors. I’m tired of people telling me there is nothing wrong because my son is bright and energetic and a nice kid. I’m tired of being told he dropped off the growth chart because I myself am petite. We see yet another doctor next week and I really thank you for all the information you have posted here. I’m definitely bringing some new ideas to the table with the doctor.

    • Beck, I hope something here helps! Please don’t be afraid to get second and third opinions. There’s nothing more frustrating than having your instincts second-guessed. Figure out what it is that would reassure you and ask for it! And please — let me know what you learn. I’d love to hear.

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