We are all busy here behind the scenes getting ready for the 11th Annual ShareUnion taking place this year in Chicago on October 16th through the 18th. We have our best overall line up of speakers yet. One of them, includes author Deanna Fei. Deanna is leading a workshop entitled Healing Through Writing and has graciously agreed to write a guest blog for us. You can read it below:
In October 2012, I was just 25 weeks pregnant when I woke up in acute pain. By the time I arrived at the hospital, the baby’s heartbeat was slowing. Within minutes, she was delivered via emergency c-section, resuscitated, and enclosed in a glass box. She weighed one pound, nine ounces. None of her vital organs were ready for the world outside my body.
Her face and body were obscured by tubes and wires. Her skin was reddish-purple and not quite intact; one doctor described it as "gelatinous." The odds against her were already steep, and then she suffered a severe brain hemorrhage. Another doctor referred to her birth as “catastrophic.”
I had no choice but to cling to hope. When I reached into my daughter’s isolette, her tiny hand held on to mine.
Over three long months in the hospital, I watched my daughter fight for her life. Day by day, I learned how to be the mother of a child for whom nothing was guaranteed — not even the next breath.
Even after my daughter began to thrive, I found myself unable to tell the story of her birth. I couldn’t even say the words, she was born. I couldn’t imagine ever celebrating her birthday.
As a writer, I’d never found myself helpless to form any kind of coherent narrative out of a life event. Now I seemed doomed to relive my child’s most precarious moments in disjointed flashbacks: images and sounds and sensations that never developed meaning or context or resolution. Instead, I found myself trapped in a cycle of shame and terror and isolation.
Then, one year after my daughter came home—the same week she took her first steps—my husband’s boss, AOL CEO Tim Armstrong, publicly blamed “distressed babies” for forcing him to cut benefits for all employees. Armstrong slapped a price tag on my daughter’s life, depicting her as an exorbitant drag on the company’s bottom line and insinuating that her care was optional. His comments set off a national firestorm.
At first, all I could do was cower in shame. But as the dehumanizing phrase “distressed babies” became the subject of countless headlines, I realized that I needed to speak out to reclaim my daughter's story. To defend her right to the medical care that saved her life; to refute the depiction of her as a deplorable burden; to show the humanity behind the numbers. To acknowledge her resilience, not only her damage.
I never imagined that her story would go viral. I never expected to receive an outpouring of messages from strangers across the country thanking me for speaking up on behalf of their children, too. Again and again, they told me that my child was their child. That she is all of our children.
They shared the stories of their own babies: babies born at 30 weeks, 28 weeks, 24 weeks. Babies whose births were precipitated by a car accident, an infection, no known cause at all. Babies who never came home, babies who survived with impairments, babies who seemed unscathed.
All of these stories showed me why parents of premature babies need the support and solidarity of others in order to heal. They taught me to let go of the shame, guilt, and fear that had haunted me since my daughter’s birth. They urged me to examine in greater depth the critical issues that the “distressed babies” controversy had exposed. And they illuminated for me all the ways that love takes hold when a birth defies our fundamental beliefs about how life is supposed to begin.
This is how I came to write my new memoir, GIRL IN GLASS. It’s the story of my daughter’s harrowing journey and my discovery of parenthood at its most elemental, but it’s also an exploration of the issues that affect us all: the true tolls of prematurity, the history of how we care for sick newborns, the momentous questions that swirl around our shared future. GIRL IN GLASS is a testament to the power of telling our stories—especially when those stories recount one of the most traumatic and transformative experiences life can offer.
That’s why I’m honored to work with March of Dimes to help raise awareness of the global problem of prematurity and to speak at the Share Union conference this October—just in time to celebrate my daughter’s third birthday. I hope you’ll join me in sharing your story and learning more about what you can do to speak out on behalf of our children.
Welcome to ShareYourStory! Thank you for sharing your story with the world, and with all of us here at Share Your Story.
I heard your story via your NPR interview several months ago and just began reading your book yesterday. I've struggled to put it down. It's as if I'm reading my own story. My son, Ian was 2 years old when my twin daughters were born at just 25 weeks gestation.
I look forward to finishing your book to learn more about your journey and especially look forward to meeting you next month here in Chicago.
All the best,
Karri - ShareYourStory Mom
I'm so excited you are coming to ShareUnion. I followed your story in the media. It is very similar to mine... in the terms of our babies births (mine was one pound eleven ounces) and the aftermath.
I look forward to hearing you speak.
I, too, followed your story in the media. I just ordered your book from Amazon and am anxiously awaiting its arrival. My daughter was also born at 25 weeks (1lb, 10oz). I'm looking forward to hearing you speak at Share Union. See you in Chicago.
I am very excited to see you at Share Union. I was not familiar with your story until now, but I look forward to hearing more about it. At the same time, I am very sorry you had to go through such a harrowing NICU experience with your daughter. I applaud your courageous efforts in bringing more attention to this very important yet often stigmatized issue. Thank you so much.
I can't believe I haven't heard your story until now, and I look forward to hearing more about your daughter and her journey. When my niece was born 3 months early in 1994, I was horrified by the cost of saving her life and that anyone would question if she was "worth" it. She is a thriving almost 21 year old today and there's no way anyone would ever question her worth now. I'm sure the same is true of your daughter.
Thank you for joining us at Share Union this year! I know you'll love being a part of the Share family as much as we'll love having you. I look forward to meeting you soon.
Look forward to meeting you and for your sharing your story. My journey with my son was a different since he was not considered premature and yet never came home. But I still face the same things such as feeling uncomfortable bringing up up that I really have two boys. That moment of putting yourself out there and not knowing what you will get in response. It's sad when there are people out there who feel a life doesn't count just because they were born that young. I have had people in my life who don't understand my need for keeping scott's memory alive since he was only a two weeks old when he died. See you in Chicago in a few weeks. Nicki
I have followed your story in the media and I am looking forward to meeting you and hearing you speak at ShareUnion.
Hi Deanna -
Thank you for sharing your daughter's story, and for standing up and fighting for all preemies. My oldest son was born at 26 weeks, after 16 days of hospital bedrest due to placenta abruption. He turned 15 today.
I look forward to hearing you speak in a few weeks. Just ordered your book today!
Welcome to Share Deanna! Thank you for sharing some of your daughter's story with us. I look forward to meeting you and hearing more about your journey. I have 3 preemie boys: 2 living and 1 angel. My oldest little one spent 3 weeks in the NICU. I kept the bill as the cost of care was completely nutz! Thank your for speaking out and for encouraging others to do the same.
I am really looking forward to meeting Deanna in Chicago. She was able to put into words what so many of us who have been through the traumatic experience of having a critically ill newborn have felt. Words so many of us were afraid to say for fear they might come true. This is a book that very much needed to be written in order to show the world what these babies first weeks of life are really like. Sometimes I feel we focus so much on the positive outcomes and not enough on the journey. Thank you for sharing your story.
I remember hearing the headlines when AOL did that. It is inspirational how you are standing up for the voice of your child and so many others that are or have been in similar situations. I look forward to hearing you speak at Share Union!
We help moms have full-term pregnancies and healthy babies. And if something goes wrong, we offer information and comfort to families. We research the problems that threaten our babies and work on preventing them.
© Privacy, terms and notices