Wednesday, June 20, 2012


So, June 14th came and went, the seventeenth anniversary of Sophie's diagnosis of infantile spasms. Sophie was three months old, and I was thirty-one. I used to believe in a sort of muscle memory, a growing dread that was nameless until the day came and I realized that that was what it was, oh, yes, and no.

I wrote a book about it all, a book that I found tiresome and put on a shelf a couple of years ago. I've pulled it down, though, and might even do something with it. Here's an excerpt, a piece from the end of the first chapter, titled Diagnosis.

Within a half hour of arrival, our 12-pound baby had what appeared to be dozens of electrodes attached to her head and to a small monitor that showed an alarming screen of black squiggles and waves. Told this was an EEG, a machine to register brain-wave activity, I stood beside Sophie and feebly patted her.

"How does it look?" I ventured. 

The technician kept her eyes on the screen, twiddling with some dials.

"Oh, I'm not reading it. Your doctor will let you know."

She said nothing else for the next forty-five minutes. After that, I was led back to the original room, where I sat on a beige metal chair and nursed Sophie. In what seemed like hours, the two chipper Fellows returned, their earnest faces poking around the doorway. It didn't seem right that they were my age or younger.

"May we speak with you now, Mrs. Aquino?" They drew up chairs and cornered me. They each had clipboards and pens. I had Sophie. The Fellow spoke up first, abruptly and efficiently.

"All right. Your daughter appears to have what is called hypssarhythmia, indicated by sharp spikes and slow waves on her EEG. This is usually indicative of a rare type of seizure disorder called infantile spasms. We'll need to admit her to the hospital and start her on a course of high dose steroids. These will be administered by intra-muscular injection. We will, of course, train you so that when you take her home after a week, you'll feel confident giving her the shots yourself. We have some information here, and unless you have any question, we can begin the process of admitting your daughter, Dr. S. will see you up..."

"What are you talking about?" I hear myself say. 

The Fellow's last few sentences were coming at me from the other end of a tunnel, an incomprehensible drone. The younger resident leaned forward and spoke firmly. 

"Mrs. Aquino, your daughter will need further tests so that we can find out..."

"I don't know what you're talking about," I said, this time a little louder and I began to stand up, clutching Sophie. The two women stood up, also, simultaneously scraping their metal chairs along the beige floor.

"GET OUT OF HERE. I DON'T WANT YOU IN HERE." My voice, just below a shout, seemed to be emanating from somewhere different than my own mouth.

Who were these two women, bowing out the door, excusing themselves? Ten years later, I remember that day and that room and those women with a painful clarity. That they were quickly replaced by our new neurologist, a slightly daffy, bird-like woman with a head of wild, wiry gray hair, didn't erase them from my memory. Their attention to personal fashion and relative cheerfulness, even professionalism was an obscene contrast to the diagnosis they had loosed into that room. I’m not sure what could have made the situation better at that time, but I do know that those two women who diagnosed Sophie that afternoon became emblems for me of the medical world. I would meet them again and again over the next several years, their bland faces peering out at me in the guise of twenty-four year old hospital social workers, residents and interns.  I would feel most comfortable, later, with their opposites: Dr. S, who flitted into and out of the examining room with an almost Tourette-like intensity and who stopped me one day as I strolled Sophie down the street outside of the hospital, “Pretty in pink, she is, she is, pretty in pink.”  Dr. T, who carried a beat-up Thomas the Tank Engine briefcase had noticeable hygiene problems, rips in her hose, and tea-colored stains on her white blouse, yet she carried far more authority for me than the impeccably bow-tied senior physician who held Sophie up like a specimen and rotated her for his student’s inquisitive eyes.            

I wonder if those first two women should have entered that beige room, wailing and cursing at the news they would have to deliver. They might have dropped their clipboards and notes and ripped their expensive clothing and tore at their glossy hair. They might have wrapped me in their arms and then we could have all held Sophie and wept for her.


  1. we need that book.

    and surely those women, the ones on the first day, should have conveyed the diagnosis with some humanity, some sense that what they were telling you about your loved infant would not be easy to absorb, some compassion.

    stepford doctors. i distrust them too.

    i love your writing and your heart.

  2. Where can I pre-order?

    Stunning Stunning Stunning.

  3. Amazing, Elizabeth, and I want you to do something with it. That was breathtaking.

  4. This is stunning, Elizabeth. Breath-taking. The last paragraph just guts you. I hope you send this book out. It has the power to help. Your voice is a perfect, beautiful whirlwind. It should be heard.

  5. Yeah. Take that book off the shelf. The world needs it, just as the world needs you.

  6. Keep working with this material. You've found the vein of dramatic action. It's incredibly vivid and affecting. Find the separation now between you, the writer, and you, the character. Keep going.

  7. Well, my friend, the writing, yes amazing. As always. Does it need to find it's way out to the world? Absolutely. For so many reasons.

    For me, I am crying as I read this. My heart with yours in those moments. Knowing what you felt like. The anger.The fear. The bewilderment of how it was you were even in that place. Literally and figuratively. My room was different. Doctors different but also, entwined as our lives seem to be, I know we would come to share a Dr. S as another common bond.

    I don't know my friend, my overwhelming emotions right now as I read this, seem to vacillate between sadness and anger. For Sophie and Zoey and all the children that have and will enter this world. And for other moms who will sit and then stand and then shout " What are you talking about?"

    Love you.

  8. I am usually amazed at the callousness with which medical staff deliver devastating news, but even more so that they were speaking to you, a new mother with a tender newborn in your arms, practically barking out orders as to what was to be done. No time to process, no time to mourn or feel. Crazy.

    I think there are so many who would benefit from a book. Hope you do it!

  9. That should absolutely be required reading for everyone connected with this area of medicine.

    Your reaction was the very essence of motherhood. Breathtaking.

  10. Oh, Elizabeth.
    I hope you will reconsider publishing this book. How will they learn if WE don't teach them?
    And yes, they should have wept with you and Sophie, they should have showed their humanity. They should not have been allowed to give you this news on their own; they should have observed as a more experienced, compassionate doctor told you news that was going to change your life. Honestly. I feel such a calling to teach medical staff (as I wonder, who will listen?). Speak the truth anyway, Elizabeth. Tell that sacred story of Sophie's life. Your beautiful writing may make all the difference to medical professionals; you may also end the isolation of mothers who will come after you, walking innocently into desolate exam rooms and having their lives changed by such unformed "caregivers."

  11. Oh, Elizabeth.
    That piece of writing stabbed me right in the heart the first time. And now again.
    xoxox to you and Sophie.

  12. I still remember when Katie was diagnosed, not the day but what was said. Her birthday was hard this year, the same time as her high school graduation. Milestones always get me, measuring sticks that show me how far behind her peers she is.

  13. Having read Karen's book and having been in the medical world as a surgical assistant and the bearer of bad news time and again, I hope that you find it in you to finish the book. I suspect that it's been on the shelf for a while as you learn and grow with Sophie and become even more aware of the important messages you have to offer.

    Thank you for sharing this snippet today.

  14. I'm joining the chorus of those who want more. I thought of you and then of my mother, so long ago - Alice holding her baby and having them tell her to take my sister home because she would die soon (she lived 27 years, and she continued to have seizures). Thank you for this, Elizabeth. Keep working on it if you can.
    And P.S. I may be the only one, but I cannot easily read this black print on blue background. It's pretty but the eyestrain isn't much fun.

  15. I'm glad you're looking at this again -- it's terrific, and I'm sure many parents could benefit from your experiences!

  16. As for doctors, not to entirely excuse their chilly demeanor, but I think there's an element of self-preservation there. Doctors deliver so much bad news to so many people, they just can't afford emotionally to invest their own tears. They'd be emotional wrecks. They have to distance themselves.

  17. I think the time has come, Elizabeth. Finish and publish! Wonderful writing and an important message. My favorite books since Daniel was born are the first person accounts. Not cure stories, but honest descriptions of that long and winding road. Thanks for sharing!

  18. So beautiful your writing Elizabeth. I would love to read your book. I would find much comfort in the familiarity of your feelings. Thank you for your comforting comment yesterday, it meant alot to me xo

  19. Oh Elizabeth. This gave me goosebumps and a heavy heart filled with compassion for you and your beautiful daughter. I am so sorry you were treated with such coldness in the midst of agony. I hope you finish the book. Your writing is poignant.

  20. Beautiful writing. It took me back to our diagnosis day too.

  21. holy crap.

    i've lived just a smidge of that.

    send me a copy of that book will ya?


  22. I often gasp at the evocative grace and beauty of your writing. This is one of those times.

  23. You simply must tell your story. You are a talented writer.

  24. Strong and moving. I can see and hear the scene. Made me want to curse the women who didn't have the brains and compassion to talk to you like a human being.

    I hope you do 'do something' with this book.

  25. So, can't you send this blog post to publishers (or agents?) and ask them to see how many people are asking you to finish and publish this book? Me, too--I love your writing, and that story was amazing.

    I know what you mean about the days leading up to the anniversary of a diagnosis, how you can feel your body gearing up even if you don't consciously remember what's happening. I don't feel that way about Maybelle's birth at all, thankfully, but I do in the days leading up to Christmas eve, which is when my brain tumor was diagnosed.

  26. Saw this quote on the Bedlam Farm blog this morning and thought of you:

    “Love is what carries you, for it is always there, even in the dark, but shining out at times like gold stitches in a piece of embroidery.”

    – Wendell Berry

  27. Did I ever tell you here about how I worked with my (gyn) doctor on a course for ob/gyns and nurses (people trained to welcome life and not deal with death) on how to treat women during pregnancy loss - and how I was the first patient after the course, and how I listened to the young doctor tell me what I'd written they should say, thinking whether I should just stop her. I didn't, and at the end thank her for her help: I hoped she wouldn't ever forget, should she assist another woman during stillbirth.

  28. Publish it... its really, really good. Don't wait..even if you miss a few blog posts. Send it to the med schools... the good ones w/ ivy all over the walls. It will be read.

  29. My job is to teach healthcare professionals communication skills, and techniques such as how to break bad news.Sometimes people say "Oh, it's just common sense, isn't it?" Stories like yours show that no, it's not, and how terrible it can be if done badly. I'm so sorry for how this happened and every day I work to try to stop it happening again.

  30. Ditto all the above.
    I'll be your agent.
    I mean, I can pay 25 bucks to become a notary, shouldn't I be able to be an agent just as easily??

  31. I love your writing. I would buy and read that book and get copies for the libraries too.



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