When Eileen Flood O’Connor’s daughter, Erin, was first diagnosed with Duplication 15 Syndrome, a devastating genetic disorder, O’Connor read many books and stories by parents who were going through similar experiences with their kids.
Then she discovered a website called The Mighty for people facing medical conditions and challenges. The site asked readers: “If you could write a letter to yourself the day you received a diagnosis, what would you say?”
She sat down to write and the floodgates opened.
O’Connor had a lot to say. Many essays followed, published in various venues, some here in The Rye Record. When people started asking where they could read her work, she decided to collect the essays into a book.
“They are all in different places, I thought it might be easier to have them in one place,” she said.
The result is “Eating Pizza Backwards and Other Adventures: A Mom, a Daughter, a Life Unexpected,” an essay collection published in June.
O’Connor always thought of herself as a writer. She majored in English as an undergrad and then attended the Columbia School of Journalism part-time while working for a nonprofit in New York City. Midway through the program, she and her husband Bill moved to London, where she earned a Master’s in Literature from the University of London.
“Writing these essays helped me to process what’s going on, and to see it a little bit more clearly in some ways,” she said recently. “It’s not really to make sense of it, because a lot of times things don’t make sense, but it’s more to get some perspective on it and see it in a different light. Whether it’s something funny that happened or something bad or hard, it’s just a way I find that’s helpful to the process of discovery.”
She decided to go the self-publishing route because she was too impatient to wait for notoriously long publishing cycles. “I just wanted it out there!” she said.
The O’Connors were living in London when they welcomed their daughter to the world in 2001. A few years in, they noticed that something wasn’t quite right. Their world turned upside down when Erin received the diagnosis, which is a rare genetic disorder that leads to developmental and neurological issues such as developmental delays, intellectual disability, autism spectrum disorder, and epilepsy.
Devastated, the couple marched on, determined to find the joy beneath the fear and exhaustion. As writer Lee Woodruff wrote in the book’s foreword, “The world has a way of showing us how little we control the script.”
Three boys followed Erin: Will, 22; Patrick, 20, and Jeremiah (Jay), 18. So, yeah, life got complicated and hectic between caring for Erin and making sure the boys were not neglected. “Glass child syndrome” is a term that refers to typical children who don’t get the attention they need because of a special-needs sibling.
“Erin has taken a lot of time, energy and focus,” O’Connor said. “I used to feel guilty sometimes, going off and doing fun things just with the boys and leaving her either with a sitter or with my parents. A friend made me see that it’s important to also spend time with my typical kids, even though a lot of the time I’m worried about her.”
But living with Erin has made her sons develop strength, independence, compassion, and empathy beyond their years.
“When we go out, they are so sensitive to other families,” she said. “They notice there’s somebody who has special needs.”
In fact, Patrick, the artist, created a series of pieces reflecting Erin’s experience of the world for his AP Art class. One of them serves as the cover of the book.
Divorce rates for parents of children with autism spectrum disorder are significantly higher than in control groups. The O’Connors defied the odds with shared faith, family, and a close circle of friends who have been instrumental in helping them through many challenging times with Erin.
“Also, a shared sense of humor has been crucial in allowing Bill and me to maintain resilience and give perspective,” O’Connor said. “When the kids were little, Bill used to call home from work to ask, ‘What’s the crisis of the day’ and I never failed to deliver big or small.”
O’Connor is not unaware, however, that they are fortunate to be financially able to get help as needed, and for that she is grateful. “While economic stability does not guarantee a lasting marriage by any stretch, it has allowed us to find time for each other and our three boys,” she said.
O’Connor quotes Mr. Rogers’ mother, who once told him that if frightening things happen to look for the helpers. Rye is the O’Connor family’s helpers.
“A lot of the essays that I’ve written were motivated because I was so moved by how people have treated Erin and us,” she said. “I’ve been so excited to put them together in a book to share with the many people that have helped us. In the back of the book, I list almost 50 names. I’m just so excited to let them know how much they’ve meant to us.”
Erin has worked delivering The Rye Record to local businesses. Two boys are in college and one is getting ready to leave the nest. Life goes on. As O’Connor writes in one of her essays: “This diagnosis will bruise but not break your heart, your family, your marriage. It will strengthen and enrich every relationship in your life. It will stretch your soul … Have faith in faith.”
O’Connor will promote her book at several local events this fall. On Sept. 4 she will be in conversation with author Annabel Monaghan at the Rye Free Reading Room, and on Sept. 27 she will be a panelist in a session on “How Words Help and Heal” with other local authors at Rye’s Watershed Literary Festival.
“Eating Pizza Backwards, and Other Adventures” is available at Arcade Books, Rye Beach Pharmacy, Coffee for Good, Athena Books in Greenwich, and the Rye Free Reading Room. It is also available online at Amazon.com and Barnes and Noble.
