Gregory of Nazianzus, an early bishop, had said, “That which God has not assumed, God cannot redeem.” We couldn’t be saved by a human being, he reasoned. But neither could we be saved by God unless God saved us entirely, by becoming one of us. I had appreciated his point when I first came across it. But now, looking at that baby doll representing Jesus, I had to wonder what His birth meant for Penny. What would it mean for Jesus to have redeemed us all, including the ones with an extra chromosome? Could Jesus have come as a baby with Down syndrome? And what about the miscarriage? Had Jesus redeemed that tiny clump of cells that had never been born?
———
Penny remained festive throughout Christmas and into her first birthday. She enjoyed the wrapping paper in equal measure to the laughter of adoring relatives and paid little attention to her pile of gifts. When we sang “Happy Birthday,” she signaled her unqualified approval by shouting with delight from start to finish. And yet, throughout the celebrations, I felt myself pulling back. With the miscarriage still on my mind, I cradled fear and doubt, as attentive to their pull as I would have been to a newborn.
———
Three days after Penny’s birthday, I flew to South Carolina. My seminary scholarship required that I join other recipients for an annual retreat, a time to share the struggles and blessings of theological training as we prayed and learned together.
There was something almost intoxicating about the promise of time to think and sleep and read and be by myself. And yet worshiping God was the last thing I wanted. My faith was perched on the edge of a cliff, in danger of toppling into oblivion if even a small storm came along. I had so many doubts, so many fears, including the fear that other Christians would judge me for all my questions. I knew the standard line, but I wasn’t satisfied with theological explanations for the pain I had witnessed when taking Penny for checkups at the hospital over the past year. What could ever redeem the suffering of all those little ones? I stepped off that plane with an open wound in my soul, a wound that had been festering without my knowledge all these months, a wound that had been ripped open with this most recent loss.
The architecture of the retreat center was simple, and it made for a somewhat bleak first impression—buildings of inexpensive brick that sat low to the ground, floors of linoleum or industrial carpet. Yet something about its simplicity brought a sense of peace. Outside, the trees were bare and the grass brown. But even though it was January, the air held a suggestion of warmth, of green buds and dandelions and robins’ eggs.
I unpacked my clothes and stacked a few books on the bedside table. I picked up my journal and opened it, only to find a series of empty pages. I kept a separate journal with my thoughts about Penny; this one was meant to be a place for prayer requests and thoughts about God. It had hardly gotten any use since I had bought it four months before.
“Well, here’s your chance,” I said out loud. With less confidence, and I’m not sure if it was a thought or a prayer, I said, “I believe. Help my unbelief.” And then I squared my shoulders and walked out the door.
On my way to dinner, I bumped into a fellow seminarian, a young woman who had participated in the retreat two years earlier. We traded hugs and started an easy stream of chitchat.
“How’s your daughter? Don’t you miss her so much?” she asked.
I laughed. “You know what? I don’t. I mean, I’m sure I will soon enough, but right now it’s just nice to be here. My mom and Peter are with Penny, so she’s in very good hands.”
As we opened the door to the dining hall, she said, “So how does it feel to be a Down’s parent?”
Her words were earnest, interested, laid before me as casually as possible, and yet the question changed the tone. I said, “I actually think of it as being a parent of a child who has Down syndrome.”
She didn’t have time to respond. Our group was already assembled in a semicircle. We took our places, and I stood shoulder to shoulder with my friend, although I felt the temptation to take a step back. To take the place I felt I had been assigned, in a separate category of parent with a separate category of child.
There were about twenty of us alongside the men who lived at the monastery. One of the brothers stood up to pray and read Scripture before our meal. He walked to the podium with an awkward gait, as if his hips and legs were hewn of the same piece. His head tilted slightly to the side. He opened the Bible and began to page through. Back and forth, back and forth.
People around me began to shift their weight. Impatience rose like steam from a boiling pot of water, wispy at first, and then picking up in speed and intensity. I held my breath, willing him to speak.
He looked up. Another brother walked to his side, and the reader said, “I can’t find the passage.” His words were somewhat unclear, as if he had rocks in his mouth.
The younger brother located the passage and stepped back, and the first man proclaimed, “In the beginning, God created the heavens and the earth.” He finished reading Genesis 1, offered a blessing for our meal, and turned to get in line for food.
As we moved to pick up trays and utensils for dinner, greeting other friends and maintaining steady conversation about our lives, I kept thinking about the brother behind the podium. Had I watched the same scene unfold a year earlier, I would have been annoyed by the delay, maybe even embarrassed by his predicament. I could imagine the questions that would have been running through my head—Why can’t they find someone who can read, who at least knows where the first book in the Bible is located? But today, I could have listened to him for an hour. Without knowing it, he had welcomed me, with his imperfect speech and the fact that he needed help finding Genesis. He allowed me to envision Penny one day reading the Bible in public. He allowed me to believe Penny could be treated as a fellow child of God without distinction, without dividing lines.
That night I picked up the journal. I wrote,
The words that keep running through my heart are safety and protection. I am afraid that God will not keep us safe. And I wonder if these are words that expose my fear of the Lord. Is this a reverent fear? Or the fear of the wicked servant in Jesus’ parable who doesn’t really understand the character of God? I hope it is the fear that the writer of Proverbs references—the fear of the Lord that is the beginning of wisdom. Because I know that faith in God—full assent to God—means faith in God’s goodness come what may, faith in God’s faithfulness even when confused, knowledge that God is not content to let me stay the way I am, but that God will insist upon changing me, whatever it takes.
———
Two nights later, our whole group convened for dinner. We numbered forty or fifty people in all—two dozen seminary students, the retreat speakers, and a dozen more local sponsors of our scholarship. It was a fun evening by seminary standards—good food and wine, conversation about theology. The hosts had even hired a magician. He worked the crowd, pulling a large silver coin from behind my ear and then making it vanish only to appear again in my friend’s purse. Some members of our group shadowed him all evening, intent on discovering his secrets. I was content to suspend disbelief. After dinner, the magician took his leave and we gathered in the living room where the couple who had founded the scholarship, Leighton and Jeanie Ford, gave us a chance to ask questions.
They were in their seventies—his hair white, hers salt-and-peppered. They had established the scholarship decades earlier after their son Sandy died when he was in college, before he could fulfill his own dreams of attending seminary.
The questions were winding down, and I raised my hand. Jeanie looked at me and nodded.
I said, “You talked tonight about the purpose God had through this scholarship, and yet I’m struck by the fact that the scholarship wouldn’t have started if it hadn’t been for a tragedy in your life. And I’m wondering how you think about Sandy’s death now.” I wanted to know how they had lived with it, with the everyday knowledge that they were alive and their son was not, with the everyday sadness that h
is life was not what they had expected it to be.
Jeanie stroked the arm of the chair as if it were a cat, with absent-minded gentleness. “For all my gratitude for all of you,” she said, moving her head to acknowledge the whole room, “and for all my gratitude for the hundreds of other students who came before you, for the twenty-five years that we’ve had scholarships and fellowship with all of you . . .” Her hand stopped moving. “I would trade it all in. I would trade it all in for the chance to run my fingers through Sandy’s gray hair.”
The last sentence she spoke to me, her eyes fixed on my face.
And as my eyes filled up with tears, I nodded. She knew what I was really asking. Even though she could see purpose in her son’s death, even though hundreds of young men and women had gone on to become pastors and teachers and serve the world through this scholarship, with all that, it wasn’t enough. It would never explain Sandy’s absence. It would never make up for her loss.
My story was different, and yet her words acted as a balm. They gave me permission to keep asking questions and move forward in faith at the same time. The thing was, I could see God’s hand, God’s work, God’s care in Penny’s life. Starting with the Spirit’s voice, “But then you wouldn’t have had this child.” Thinking of the joy and light that Penny gave to us and to so many others. Peter’s insistence that she could talk to angels. The way her life had smashed idols in my heart and begun to teach me of love. The way I was able to see other people now.
And yet there was this pervasive sadness in me, this resistance, this voice that cried out no. I knew that we were privileged to have her, but it seemed our privilege came at her expense. She was the one with the body that was vulnerable and limited. She was the one with the shorter life expectancy, the one who might never live independently, who probably wouldn’t have children of her own.
How could I hold these things together, the gratitude and the loss? The hope and the fear?
———
The next morning we were invited to walk through a labyrinth, a circuitous path etched in stone in the center of a small garden. Our leader instructed, “As you walk, consider praying the words, Lord, I trust you.”
I set out along the curving path, stopping every so often, praying those words, Lord, I trust you. Lord, I trust you. I trust you with my family. I trust you with my career. I trust you with Penny. But it wasn’t true. They were empty words, prayed out of obedience. And on the heels of that thought came the realization that I wasn’t sure that God was trustworthy. I was still walking slowly, but now my fists were clenched and it was as if I were alone, in court, pacing before a judge, demanding that God answer me. How can I trust you to protect us? How can I trust that you will take care of Penny? After two miscarriages, how can I trust that you will care for our family? After seeing all those children in the hospital—in wheelchairs and on feeding tubes and stretchers—how can I trust you? How can I ever again find the faith to trust you?
I reached the center of the labyrinth, a circle, and I stood there, head down. No words came. I waited, but there was nothing, just an emptiness, like a room that had been cleared of furniture, with bits of paper fluttering around.
I walked out slowly, silent.
I found a bench nearby and pulled out my Bible. I held it in my hand unopened, as if I were weighing the risk of turning the pages. I thought back to the magician the night before, the card tricks and coins that showed up in places they couldn’t have been, with a wave of a wand, with sleight of hand and optical illusion. I knew I shouldn’t treat the Bible that way, like a Magic 8 Ball that would cater its words to my questions. The Word of God was serious business, telling a story that spanned generations. It wasn’t to be manipulated.
And yet I didn’t know what else to do but hope that God would speak to me. I opened the Bible at random to Psalm 116. It began,
I love the Lord, for he heard my voice; he heard my cry for mercy.
I read on, and every word seemed to be written for me, to me. And then I reached verse 6:
The Lord protects the simplehearted; when I was in great need, he saved me.
Be at rest once more, O my soul, for the Lord has been good to you.
It came as a promise. I have been good to you. I will protect your family. Your daughter will be protected from harm. Your soul can heal. Your soul can rest.
———
That week, we’d had an ongoing conversation about the nature of prayer. I was struck by how often my prayer life resembled a grocery list. Share the things I need and then tick them off the list one at a time. Without really expecting an answer. Without listening for God’s response. Without faith that prayer matters, that it really can change things, that it actually allows us to know God more fully.
A number of my classmates had felt the same way, and so we had decided to come together with the expectation that God would be with us as we prayed, leading us in prayer, hearing us and answering.
We gathered that afternoon. At first, I sat on the edge of a wing chair, elbows on my knees, eyes closed. A few people were standing, others seated on the couch. In my mind I saw a picture of Mary of Bethany kneeling before Jesus, having let go of her tasks and worries as she simply sat at His feet and learned. I slid from the chair onto the floor.
Someone asked if I wanted prayer, and I nodded. I could feel strong, warm hands on my shoulder, my back, the top of my head.
Our leader prayed out loud, “Spirit, if you have anything to say, speak through us.”
The first word I heard was from Tom. “Release,” he said.
And then another voice, “Lay it down.”
I was so disappointed. I had tried and tried and tried, and those commands were exactly the things I was unable to do. I couldn’t release all the fear and doubt and worry. I couldn’t lay it down. I wanted to stand up and walk away.
But then Mark prayed, “Lord, I remember reading an essay Amy Julia wrote a few years back. And I remember that she wrote about your promise to be with us. Not your promise to take away pain or to explain everything, but your promise to be present in the midst of our pain and in the midst of our questions. So be with her now, Lord. Be with her. Release her. Lay it down for her.”
His words spilled over me like a warm rain.
And another friend spoke up. “When I see Amy Julia kneeling here, what comes to mind is Mary of Bethany sitting before Jesus and receiving from Him. I see her doing what Jesus says is the best thing.”
———
I flew home that evening. Penny was asleep when I arrived, arms and legs splayed, facial muscles relaxed. I reached over the side of the crib to rest my hand on hers. I hadn’t received any clear answers to the questions I was asking. No new explanations for pain in the world. No promises that my life would be easier from now on. Just a reminder that God was with us, through a baby in a manger, through suffering, through a cross. Through a child with Down syndrome, in the midst of a miscarriage, in the midst of worry and grief and doubt. As I watched Penny’s chest rise and fall, there was peace.
Be at rest once more, O my soul, for the Lord has been good to you.
16
Penny has started clapping and waving. She raises her hands over her head when I say, “How big is Penny?” and she lets go of her spoon when I ask. I always say, “Good girl,” and she claps for herself. She is beginning to pivot and scoot and slowly, cautiously, move around.
I still get overwhelmed by the breadth of the difficulties she could face with this extra chromosome. The little things—thin hair, creased palms, widely spaced toes . . . The physiology—soft spots, small ears and nose, misshapen teeth, hearing loss, poor eyesight, speech problems, large tongue, small mouth, low muscle tone, heart defects, lung vulnerabilities.
The deck is so stacked against her, and yet she is thriving. What a gift.
January 2007
I stepped out of the shadows of Penny’s bedroom. Peter was waiting for me in the hallway, and he opened his arms for a long hug. Fro
m there, we got ready for bed, but then we lay awake for a long time as I shared the details of my week. We had talked on the phone while I was away, but only in person could I try to convey my renewed sense of peace and hope and gratitude. The new faith that God cared about me, about us. That even in my anger and doubt, God would respond. That I didn’t need answers as much as I needed love.
After he heard my account—the tears, the prayers, the repeated image of sitting at Jesus’s feet—he asked, “Did you miss Penny?”
“I was glad to see her when I got home,” I said. “But no, I didn’t really miss her. Is that terrible? It was as if I needed to be away from her in order to sort through some of this stuff. I did miss you.”
“Age,” he said, “I worry sometimes, because this has been so much harder for you.”
I cocked my head, waiting for more.
“It was hard for me when Penny was born. Those first twenty-four hours were the darkest ones of my life. But since then, I’ve been pretty much fine.” He shrugged. “And sometimes I worry that my lack of doubt and anger has been hard for you. That somehow you might feel judged by me or something. But I think how you’ve been feeling totally makes sense, even though I haven’t felt the same way.”
I pictured Peter and Penny together—when he scooped her into his arms and turned on jazz from New Orleans and danced, when he threw her in the air to bring on giggles, when he helped her work through the motions from sitting to standing up, all the while whispering encouraging words. I shook my head. “I can see why you might think I felt judged. But you haven’t made me feel that way at all. It’s funny. Your attitude has actually been a gift to me. I watch you with her and listen to you talk about her, and it’s just this unadulterated love. It’s exactly what I want you to feel. It’s exactly what I want to feel, even though for me it gets complicated by all my doubts and fears. The way I see it is that you’ve let me wander off wherever I need to go, but you’ve given me a place to return.”
Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny Page 15