My path out of darkness was writing
After Sarah was born, I started a basic blog that snowballed into more.
OK, so I’m taking a deep breath as I introduce you to the thematic thread of June’s weekly posts. I haven’t publicly written or spoken about my creative past—the fact that I once was a branded Catholic grief author who traveled nationwide to speak to the bereaved in workshops and retreats and conferences.
But two of my Substack friends,
and , independently of each other suggested that maybe I write about the thing I didn’t want to write about. Maybe I just work with the resistance and lean into it, then share whatever stories about my past want to be told through me.So there are five essays that take you into this world I left behind. This is the second one. I hope you will stay along for the ride.
Today is the second essay, following “I have a confession to make,” that explains the origins of how I became a branded Catholic author. I’d love to hear from you in the comments about a specific time one of your dreams came true.
To read the first post, click here:
The birth of a blog
2013
I’m walking to the post office nestled in the heart of our sleepy, rural Indiana town. Sarah kicks her legs in the baby stroller I’m pushing, while Felicity, almost three, skips ahead of me. As we pass our elderly neighbor’s house, Max approaches me, wiping his hands with a shop towel.
“How’s your baby doing?” he asks, grinning. I return his smile, tell him Sarah’s doing fine, and hold my breath for what I assume he’s going to ask next.
“What is it she has again? Doesn’t she need a bunch of surgeries?”
There it is.
I hear variations of this question on a daily basis, and somehow I’ve formed a truncated summary of Sarah’s diagnosis and related health conditions that becomes my canned response. “Apert syndrome,” I say, exhaling loudly.
“App-irt?” he asks, scrunching his brow.
“No, it’s pronounced ape-irt,” I correct him.
He slowly nods, then offers a polite wave, and the girls and I are free to carry on with our day. Except not really, because I know today at least two more people will ask me the same questions my sweet older neighbor Max did.
When I share with my close friend Julie my frustration at repeating the same information about Sarah’s rare disease to multiple people, she offers a simple solution: “You should start a blog. That way you can tell people to read the blog, and you won’t have to spend the mental energy saying the same thing over and over again.”
Of course.
Later that evening, after Felicity and Sarah are in bed and Ben decides to tinker in our detached garage, I open my laptop and begin researching “How to start a blog.” Naturally, there are options—too many—and I feel disoriented. I snap my laptop shut, lean back on our couch, and close my eyelids.
I don’t know the first thing about starting a blog, but I’m going to figure it out.
Love Alone Creates
After much deliberation over the course of a few weeks, I settle on WordPress to host my blog, because it is viewed by most writers as the “professional way to go.” I decide on the name Love Alone Creates, because this is a site dedicated to chronicling Sarah’s diagnosis, upcoming surgeries, and therapeutic interventions.
I stumbled upon this phrase, maybe while reading an article or a book, and never forgot their potency. The quote is attributed to Maximilian Kolbe, a Catholic saint who died in Auschwitz. He said there are only three words we need to remember about life: “Only love creates.”
Because I am what’s called a cradle Catholic—meaning I was baptized as a baby in the Catholic Church and raised by parents who faithfully took me and my younger brother to Mass every Sunday and Holy Day of Obligation—my faith matters a great deal, even more than it did before Sarah came into our family.
The one problem is that I’m angry with God. Sometimes I feel a roiling rage inside me, and I can’t make sense of why this happened to Sarah. Why this diagnosis? Why her? I already know these are fruitless questions, but I ask them, because two of my friends gave birth to healthy babies the same week Sarah was born. And instead of feeling overjoyed, I was pissed. I balled my fists and shook them at heaven, at a God I thought I knew and understood.
Why?
“There is no answer,” my spiritual director, Mary Sharon Moore, tells me. “Only the questions. ‘Live the questions today,’ like Rilke wrote in his Letters to a Young Poet.1 That’s all we are given, anyway.”
A Face Only A Mother Could Love?
I begin posting information about Sarah on the blog: what I learn at her latest checkup with specific specialists, photos of her head and fingers pre- and post-operation, and updates on her growth and development. Quickly, however, I insert short reflections about what it’s like raising Sarah and how her diagnosis has shaped my idea of motherhood.
Over time, my posts contain less information and more stories. Writing in this way—honestly, reflectively, deeply—weakens the intensity of my rage. It is cathartic, but it’s more than that. I know, because my three friends who habitually read my posts encourage me with these messages:
“You are a gifted writer. I think you should find other places to publish your work.”
“Have you ever thought about writing a book?”
“You have the ability to put into words what other people go through but don’t know how to explain.”
Bolstered by the faint possibility that maybe my writing serves more than the initial purpose I had planned, I type a draft I plan to post on my blog later this week:
A FACE ONLY A MOTHER COULD LOVE?
I remember growing up and hearing the cliche, "S/he has a face only a mother could love." I came to understand that this meant some kids were endowed with natural, exterior beauty while others had less-than-desirable looks. Recently I thought about this phrase, and it took on new meaning. As a mother of a daughter with a facial difference, I realize that I am biased toward her appearance. Sarah's countenance is one that has been familiar to me since her birth. I know every curvature of her little nose, every trace of her unique fingers. There's comfort in knowing our children so intimately that, regardless of their visage, we love them.
But this was not always so for me. I regret to admit that, when Sarah was a newborn, it took me several weeks—months, even—before I came to see her as my daughter. Every time I held her, I was frightened, because I didn't fully understand what Apert Syndrome was all about. Her severe facial features always made me uncomfortable, mainly because I was afraid of facing the inevitable surgeries and struggles. I didn't know what the fight for her life would look like, and I had no way of seeing her three, ten, or fifteen years down the road.
I have come to see with the eyes of my heart now.
I am drawn to Sarah’s natural ability to love.
Maybe some people will always see Sarah as "ugly" or "reprehensible," but I don't. I don't believe in the old adage, "a face only a mother could love" anymore, because it's incomplete. Every face of every person reveals the window of their soul, which is what I am looking for in my daughter, more than what is found in plastic faces that are carbon-copied on billboards and in magazines. I am looking for substance, and Sarah has it. She is a real human with a genuine desire to learn and grow and love, and that's what I see in her—Love.
Sarah is still young, and so am I. At thirty-two, though, I wonder how much I know about religion and faith and God. What I know is that writing helps me explore these ideas and alchemize my powerlessness into something that gives both Sarah and me a voice in this world.
Today I share with you a testimonial from a phenomenal writer
whose story I featured as April’s monthly guest post—and which received a huge response! Jess touched many lives, as I knew she would, and when I received this note from her shortly after her post went live, she generously agreed for me to publicly share it. It’s connecting with real people, like each and every one of you, that makes this creative work I do so fulfilling. Thanks for spending time with me today.
Your financial contribution helps supplement our family’s expenses and offset the costs of ongoing medical care for our daughter Sarah that requires 20 hours of unpaid caregiving on my part. I want you to know how much your support means and how it helps our family.
See https://www.goodreads.com/quotes/717-be-patient-toward-all-that-is-unsolved-in-your-heart for full quote.
"I have come to see with the eyes of my heart now.
I am drawn to Sarah’s natural ability to love."
Beautiful Jeannie. It's interesting how anger often gets a bad rap. Anger, rage, vengance are uncomfortable emotions, deeply so. For me I've discovered that anger and rage are both "hot", full of fire and by contrast vengeance is cold, full of ice. While vengeance is something we can feel, I believe it is not something intended for us to own. Conversely, anger is. As humans, we can learn a lot through anger. It is a fire that can temper, purify, and strengthen. They are all qualities that add value to who we are. Fire can also destroy when out of control. How incredible that you have used your writing to express, own, sort through, make sense of, the experiences of life including the anger and rage you felt against your God and be brought to a place where "I have come to see with the eyes of my heart now." Phenomenal. Thank you for sharing.
Thank you for sharing
I’m enjoying reading your posts
How could anyone not be interested in pure, loving , charming and sweet Sarah
Hi Sarah
You are lovely
☺️