Category Archives: Anencephaly

A Slow Walk to Wonder: Anencephaly, and Love

37233069_10215261927874206_5466771748877762560_nOn the day that my daughter April found out that the baby she was carrying had anencephaly, we weren’t terrified. We didn’t know enough to be. Even the baby’s gender was still unknown. We weren’t given sonogram pictures to obsess over, and we certainly didn’t know anyone else whose baby suffered from it.

Our friends, likewise, had never heard of anencephaly, and several googled it–and saw things they wished they hadn’t. More than one friend said, “You should have told us not to look that up.”


On the day of her birth, for just an instant after delivery, life felt like Ripley’s Believe It or Not. It was not until we saw her that we learned Stephanie Grace’s anencephaly was brought about by a severe case of Amniotic Band Syndrome,  in which bits of the amniotic sac’s lining somehow tangle around the baby.

Our world had shifted once on diagnosis day; on her birthday, those amputations and alterations we did not know could even be–horrors so great no one talked about them–changed our world again.

But the wholly-engulfing terror and loss lasted only a moment–a millisecond where the roller coaster plummets, the stomach goes–and then everything settles, the breath returns. The terror is gone.


In 2016, on those early-summer afternoons when I stared at the Drake elm in my backyard, I was lost. We all were. And people were scared to try to reach across our chasmed grief, since, as a cousin in New York confided, “They don’t make greeting cards for this.”


I’m not easily soothed. I can’t soothe, either. From the outset each school year, I tell my students that I will not pat them. They will not get daily compliments from me; praise will not be flung like confetti. I stand there and say some sweet things, “Honey, I love your jacket” or “Your hair is lovely,” and even though they do not know me yet, they agree: it sounds fake.

Then I talk about alcoholism, privilege, and pain. I talk to them about self-doubt and pregnancy and wild parties–things on teenagers’ plates. I tell them that I know that a teacher is just another problem in their lives; I know they pay their parents’ water bills, and Mom sometimes does crack before school. I acknowledge their pain.

I sound real.

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It was not until four months after Stephanie Grace’s birth that we found the Facebook support groups Anencephaly Info and Anencephaly Hope. April, by then, was a thousand miles away living with her birth family, and I suppose my initial thought was that Facebook could provide her connection–a virtual peer group.

My initial Messenger exchange with Info’s founder was twenty-three words. It hardly seemed life-changing.


In those days, I listened to Shane & Shane’s “Though You Slay Me” on a loop during my planning period. Over and over I listened to John Piper declare, “Of course you can’t see what [your affliction] is doing . . . It’s not meaningless . . . do not lose heart. But take these truths and focus on them. Preach them to yourself every morning . . . until your heart sings with confidence that you are new and cared for.”

I saw no meaning in my granddaughter’s horrific death or my daughter’s anguish.

To even consider the possibility of a singing heart was absurd.


But on a quiet Spring morning, on the day of what should have been a sad stillbirth, my family instead had witnessed the hand of God. In that little hospital room, we felt the splitting of time, we glimpsed the eternal, we lived a Truth that most do not. And I will say it always, testify forever: I didn’t know Time could freeze like that, that Solitude could descend, that Love and God could wholly fill a space.

I shake my head as I type those words. I marvel still.


I imagine God chuckled, looking down at me that day–broken, willful, and impulsive on my best days–and said to Himself, “She is going to tell everyone what she sees Me do,” as He wooshed into that room.


37209108_10216042626315933_6139790444101369856_oBecause that’s what you cannot fathom on the dark diagnosis day: you cannot fathom that anything good will come; you cannot see any option other than pure pain. You see loss, loss, only loss. Such an abundance of loss.

And there is no room for joy in the words “incompatible with life, ” because, for parents, their children’s lives are their joy–the cuddling in the bed on Saturday mornings, everyone warm under the covers, safe and together; the first walk in the muddy backyard in the pouring rain, reveling in the toddler’s joyous splashing of his rubber frog boots; the simple pleasure of looking at cows.

On diagnosis day and in the shell-shocked weeks that follow, when so much is newly ruined, to imagine any possibility of redemption is almost impossible. To suggest it is nonsense.


But that’s what comes. After the funeral home, with the tiny Moses basket; the coffin so small a mother can carry it; the urn smaller than a child’s fist. After the months spent in the dark on the sofa–or in the rocker on the patio staring at silent trees. After the memory garden is planted and the headstone with its tiny angel wings arrives. After the first Christmas is survived, the Mother’s Day endured. After all those tears.

After all that, redemption slowly comes.


When I was younger, at church youth group, we had testimony time. We would stand in front of everyone, the microphone tightly gripped, and tell each other: this is what I’ve seen God do. This is what I know for sure. And there would be applause.

Truthfully, at that point in our lives, most of us had endured very little.

But I am thankful for that seed, for the understanding that it is important to say to others: I have done this hard thing, and I am standing here–because your standing implies that if they, too, have to walk that route, then they, too, will also stand.


That’s how I spend several hours a week now: testifying into a Google phone, talking to women in England and New Mexico and Belgium. Telling them how terrified we all were, how April didn’t think she could bear her sorrow, how I wanted to run from the room,  how we all thought we would collapse, but instead, we saw God.

I reassure them their babies are going to be beautiful, that their lives’ best worst day is coming. I tell them to try and believe me, despite the pictures on Google.  I ask that they instead look, really look, at the anencephaly family pictures posted in our Facebook group–the bonneted babies held by truly proud parents, their tiny fingernails painted like their mothers’, their footprints pressed into the family Bible, their beaming siblings bedecked in “Big Brother” and “Big Sister” shirts.

I tell them of the Love in the room.


Last week, two moms had their sweet babies. Born alive. Miracles, both.

And their moms’ first report was, as I promised them it would be, of all that Love.

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https://www.gofundme.com/grimes-family-cancer-fund

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Stillbirth: One Month On

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Memorial flowers still absorb our silent cross-eyed stares.

(What is this? What is this, even?)

Sympathy cards pile on her dresser.

Crisp handwriting and broken words.

(There are no words when there is no life.)

So much stolen that the words go, too.

Meals feralize. We eat all. Or nothing.

Books cannot distract. (The crossed eyes, taut, refuse.)

TV–never compelling–now even worse.

Prayers surround us, unanswered:broken steppingstones.

A few more could not hurt. But they (may) change nothing.

We cannot touch each other.

The ramrod anger stiffens so; there is no bend or ease:

No reaching arm, nor hand of comfort.

Father, mother, daughters–none can hold our own hard sorrow.

(Do not, please, prop yours unthinkingly here even for an instant.)

Work lies like forgotten knitting. One day we craft. The next–indolence.

(It is absurd how little truly matters. The world lies: to claim value in the worthless.)

Our teeth unbrushed. Our unkempt, haphazard hair trimmed in the dim bathroom.

(Who can brave the Southern beauty shop?)

No rest is found in darkness. Nightmares abound, constant and grim.

(Except one sweet reprieve in a garden sculptured with stark metalloid poppies.)

Even the most obtuse pity our brokenness. Impelled to help, nevertheless

Sensing the ridiculous in the grand gesture, so worthless with its words.

This known, they are simple and quick. (Unrelenting.)

Repeatedly they push the stuck and damaged buttons of our broken hearts.

Daily, students press their warm faces to mine; insistent touchstones.

(The whirring cameras document their dogged reaching beyond my statuary.)

Kind questions and hugs in the acquaintance-filled grocery store,

Like spider webs flung over the Grand Canyon–

perhaps (someday) shall lead us back to the known familiar.

 

And we may find the people we were before this devastation.

Before the raging. Before such sorrow.

 

Before we fully knew.

 

 

The Worst, Best Day

12992368_10209707986039601_374484923_nTuesday evening, the baby was not kicking. She had not kicked in about nine hours, and April was growing concerned. She tried a warm bath, a sugary drink, a cold drink, a Mountain Dew, walking, sitting still, lying down, and playing music. We called her obstetrician’s office in Savannah; the answering service attendant and I strongly disagreed over whether she needed to know precisely what medicine April took at age six. (“I cannot tell you that right now.”/”Let me just write down that you refused.”/”Please make sure you also write down that we are two hours away and the baby is not moving.”) My truculence was punished by my not getting to talk to the doctor, though the secretary did condescend to say, “He said you can go to the Waycross ER.”

The Waycross ER it was.

Like most ERs, our ER is sometimes a place where you have to consider pinching  your children to make sure they wail louder than the drug seekers. Last night, when we walked through the door, the lobby was calm, but they were training a sweet new intake clerk. If you are a waitress in training, spill a coke on me; I won’t say a word. A slow, new cashier? Count that money three times–I’ll wait. Kind and fumbly ER typist? No. I can’t.

I used my Teacher Voice to holler to a triage nurse: “How long’s it going to take to get this baby’s heartbeat seen about?” She asked if April was over twenty weeks, and then gave us the “Get Out of the Waiting Room Free” card: pregnant women over twenty weeks get to go straight to the third floor.

Three nurses greeted us quickly; it was a slow night. One patient had just given birth and was immediately moved to another wing: we then had the entire labor and delivery wing to ourselves. They set about trying to hear Stephanie Grace’s heartbeat using a fetal monitor; it seemed to be there, but faint. They weren’t sure, and wanted to do a sonogram–an expense we wanted to avoid if possible. But sitting there together on that hospital bed, not really knowing whether that was the baby’s heartbeat or an echo of April’s, we decided that one more scan might be best.

I have never seen a stiller sonogram.

I gripped April’s arm too tightly, willing the baby to wake. Once again, I was stunned by my inability to see anything baby about the sonogram. No heartbeat, no feet, no head, no arms. Just spine. It was March 16th all over again–but worse. I looked at the tech and the nurses, trying to sense weakness: who would tell us now? Did we really have to wait an hour and a half for a radiologist in Minnesota or Maine to download and read what looked instantly obvious? They formed a tight huddle, but as April went into the restroom, I pounced, hissing their names and making thumbs up and thumbs down motions with raised eyebrows. Demanding. Now.

I honor their professionalism. None cracked. But in my eighteen years teaching teens, I have learned to read split-second reactions. And although I wasn’t told, although no one’s face changed an iota, I knew.

April did, too. She swaddled herself in blankets and said, “I just don’t feel good about this. I don’t think I saw a heartbeat on the sonogram. Nothing moved.” We sat in silence, and time passed. The nurses and the tech once again entered in a huddle–they took turns speaking, so that no one person broke our hearts. There was no heartbeat.

At 46, my rage, I know is impotent. It will not pay the bills, fix the car, cure the cancer, or start my grandchild’s heart. It’s useless, really, to argue about what we are dealt--but I had continually prayed, hoped, and believed for Stephanie Grace to have a chance to enjoy a few hours on earth. To  ask April to gracefully bear this, too, seemed a most brutal injustice. 

April’s tears were hard and angry, but brief–because, as she points out, “I was given medicine.” As she dozed, I sat wondering about the unfolding day–we’d envisioned Stephanie Grace’s birthday as a summer day in a Savannah hospital with a top-notch neonatal unit. To be in small-town Waycross on a spring work day was unexpected. I knew the day would be long, but I hoped we would be able to proceed with what April wanted–very few visitors, a tight circle of love around sweet Stephanie Grace.

The first sign that the day held possibility: a message brightened my phone about 7:00 AM. “I’m working in the OB today if you need me. I love you.” A former student, Ursy, was checking in. Her firstborn also died from severe birth defects, and she and April had been planning to have lunch one day and discuss what April could expect. A room-brightener by nature, she cheered us greatly. She told us the story of her daughter’s birth; the girls discussed memorial tattoos–April wanted Stephanie Grace’s footprints and the green anencephaly ribbon. Ursy kept telling April, “Get lots of pictures. Lots and lots of pictures!”  

Pictures posed a problem: early that morning, we’d learned that the photographer we planned to use was unavailable on such short notice; others were similarly booked or not up to the task–and who could blame them, with so much unknown? It was anguishing–it was so important to us all that this day be preserved. We’d been comforted by others’ beautiful baby pictures, and April wanted her own. I kept Facebooking photographers, and finally texted another former student, “Help me find someone!” Within thirty minutes, a sweet-voiced stranger named Stacey was reassuring me, “I’m on my way,” and another piece of our day fell into place.

In all of our time enduring medical crises and hospitalizations, I have learned two things: the first is that the right person will ALWAYS show up. I was mildly curious who the day’s right person would be. For us, the Right Person is never a best friend or a favorite relative because second truth is simply emotional distance is ideal in a hospital visitor during the first throes of crisis. (Alternately: helpful acquaintances can be better than friends, who are often better than family.) This second truth seems cold, but it’s a truth we have lived. It is easy to lose yourself to sorrow when a much-loved aunt shows up, especially if her emotions are also running high. A casual friend or coworker can be a more appropriate support; they recognize your sadness,but their presence encourages equilibrium, something a 40-hour stretch without sleep can require.

At 9:35, a Facebook message came through: “I’m wrapping up things here at the church so I can be free for you the rest of the day.” And, just like that, I knew who the Lord had planned to be the day’s right person: Beth, the mother of four of my former students. I’d seen her at a restaurant a few weeks before and told her the news; she invited April to lunch and took her shopping for the baby. And she planned to attend Stephanie Grace’s sad, sweet birthday.

April dozed as the baby’s father slept in a recliner, having come straight from the night-shift. I quietly sent texts to family members, including Abby, who reported that Greg was still asleep after his midnight run to check on us in the ER. I advised her to wake him and arrive by 11:00.

By 11:17, we’d assembled–a small, slightly frightened crew. The nurses had cautioned that the baby, having died, may be discolored or disfigured; they explained privately to me that, for babies like Stephanie Grace, if the baby’s defect was thought too gruesome for the mother to see, the nurses would whisk the child out of the room and “attempt to make the baby presentable, or wrap her so that the mother can at least see the hands and feet.” We all were silently afraid of what we might see, of what the next hours held.

Abby, Beth, and Stacey waited together down the hall as April slept. We’d been told that the mothers of stillborn, preterm babies often slept, then woke abruptly and–whoosh!–gave birth before the nurse call button could even be pushed. As April slept, my prayers were frantic. My mind was frantic. I could not deliver my granddaughter, could not disentangle her from the sheets. Surely that would not be required of me.

(Author’s note: Brown text below may be difficult to read, but no harder than it was for us to live.)

And then it was time. April awoke, and the just-in-time doctor delivered sweet Stephanie Grace at 12:13–and I was overtaken.  Ninety seconds before, I doubted my ability to look at my granddaughter,  but I was now thunderstruck, mesmerized. The nurses were hastening her from the room, and I whipped behind them, literally, completely unable to take my eyes from this perfectly imperfect, tiny child.

“Don’t you want to stay and encourage April?” a sweet nurse suggested, for the defect was horrific. “No, I’m not leaving her side,” I replied, my eyes still fixed on her. Two truths: It was so awful. And she was so beautiful. They took Stephanie Grace to a nearby room and laid her on an empty hospital bed. As she lay on the blue plastic chuck, her perfect mouth open and her tiny hands clasped, I saw what will be the horror of my life–a secret the sonogram had not revealed: the baby was missing her right leg below the knee. My brain screamed and screamed and screamed at God: ALL April had come to want was a footprint tattoo, and she couldn’t even have THAT??? Two feet was too much to ask for? We were to be denied even that???

And then, that quickly, the rage was gone–I knew we would have loved her, leg or no leg. We would have played soccer, gone to therapy, visited specialists–the rage was gone and the wishing returned. I so desperately wanted a well, one-legged soccer player romping through our house. I wanted the hassle of driving to the best pediatric orthopedists.

My breath was gone; I was full of wanting. I was only all the wanting in the world. 

I started taking pictures of the baby, ungroomed, imperfect, untouched. I turned my camera into a sanctuary forever–full of true, if gruesome beauty. She had one leg, a clubbed hand, a deformed arm, and no skull–but also long fingers, a sweet face, a tiny nose, and decidedly un-toadlike eyes (how wrong the doctor had been!)–all of her, unswaddled. Pristine.

Greg came in search of me, and after begging him not to leave the baby for a second, I went to April. She was proud–radiant with pride. I went to get the photographer and Abby–who went immediately to the baby, and then to tell her sister of Stephanie Grace’s beauty. To soothe her as only a sibling can, to say, you will be able to hold and love this baby because she so very far from frightening.

April stuck her hand out, silently demanding my iPhone. She saw the baby’s hands and relaxed some. The baby’s face, her small nose. April relaxed futher, and a flick of her wrist got her more quickly to the other pictures. She brought the iPhone to her face, peering and scrutinizing. I could almost hear her saying to herself, “That’s not too bad.”

And suddenly, holding her baby became possible for her.

The nurses dressed Stephanie Grace in a tiny gown and covered her head in two caps; they wrapped her in a pink lace-trimmed blanket hand-sewn by an 83 year-old woman touched by April’s story. Stephanie Grace, snug and beautiful, was taken down the hall to her mother’s arms.

The only word: transformation. The truth of that word, of every word here–all of the Unknown that had stalked and savaged us for weeks was gone. Removed. East and West became real–the Unknown was so far away and so absurd. The room was reverent–this sounds like hyperbole and romance and overkill, but oh, I assure you, it is so true–the room was far and away and time was frozen and sound was still and there was just that baby, that sweet baby, and all of these people who loved her. 

It was so awful, so beautiful. So terrible, so holy. 

She was our shared treasure, everyone holding her and studying her, marveling at her pin-prick fingernails, and April adoring her tiny ears. Her petite mouth was a mirror of April’s. We held her hands, kissed her forehead. There was no chatter or cooing–looking back, there is so much silence, but there was no need for words. The cries of you’re here and I’m delighted and you’re here, and I’m so sorry, though unspoken, filled the room.

We took so many pictures. The compulsion: capture every instant. Store it up. True treasure. Truth and treasure. The room was filled with these two things. There was no posing, no checking for a camera, no glancing or glimpsing.I did not look at April, Abby, or Greg–I did not worry about any of them. There was no concern for anyone or anything–our time in that room was the most singular time in our lives. We were all alone, so alone with that sweet baby. Her nineteen ounces filled all space.

We held Stephanie Grace throughout the afternoon. At 3:00, the nurses suggested making a pallet for the baby on the sofa, so April could see her from her bed. I told Stephanie good-bye, once, then twice, and, in order to live, I have to know she heard my apologies as well. They are legion.

***************

There is so much that we do that is wrong and ill. We make decisions and say words that are foolish and hateful. We destroy ourselves with anger and rage and all sorts of envy. We self-destruct and immolate and blaze and blaze and blaze. There is so much wrong. There is so much wrong in all of us.

But I have seen the right, and I have seen the perfect. I have glimpsed the glory, and I will tell the tale.

***************

As she went to sleep empty-armed and aching in her hospital bed last night, April said to me through the darkness, “I know this sounds crazy, but I’d do it all again.”

As would we all.

 

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Christ: Who Strengthens Me

12976754_920310534764208_2244250461583658971_oOn my classroom white board, there is a list of things I cannot do. Currently, it reads: “Carve into a mountain; jog to Blackshear (nine miles); cross the monkey bars; roller skate; be nice to Abby about her eyelashes” (Ab added that last one).  It’s a silly list, but it’s meant to remind my students of two things: that works of nonfiction may not always be truthful (mountain carving; jogging barefoot through the snow carrying a violin) and that we all have things we cannot do.

An honest and fearless list would, of course, be much longer. It would include more negatives: I can’t help you with a loose tooth or a nosebleed–ever.  I can’t be kind when I’m really, really tired.  I can’t repeat an answer more than three times nicely. (I start spelling each word in thundering tones.) I can’t remember names when I’m anxious. But lately, the biggest Can’t remains this: I can’t cope well with my daughter’s pregnancy, nor with the fact that her anencephalic daughter, Stephanie Grace, is expected to die soon after birth.

I generally fare well in the struggles we face. I always have. From my husband’s leukemia and our family’s cross-country move to students’ in-class seizures, I have handled past crises calmly. But this pregnancy, after a series of smaller family crises in the fall, has just done me in. I’m ready to turn in any medal I won in the Cancer Caregiver Olympics or the Child of an Alcoholic Triathlons–because in the Parent of an Unwed Pregnant Daughter Speed Trials, I’m not doing as well as I’d like.

I suppose that I expected more of myself because I’ve always done well with my pregnant students. I recognize their stammering and hesitant, “Can we talk?” and, if I’m among the first adults they tell, I manage to make the interaction survivable for both of us. I want my student mothers to remember adult support, not condemnation. Logically, I also want that for my own daughter as well.

I just can’t find my footing–I can’t put the pieces together. I can do some things–buy maternity clothes, accompany April to doctor’s visits, get excited when I feel the baby kick, make jokes about the baby’s stubborn streak, and even talk with some equanimity about the plans for her funeral. Anything pragmatic about this pregnancy, I have a pretty good handle on–if I haven’t figured out the logistics, I have a fairly adequate general plan. But in every emotional aspect of this pregnancy, I am inadequate. Not enough.

I couldn’t even be happy before it was time to be sad. 

April, at 24 weeks, is not struggling. If the time with her daughter is limited to Stephanie Grace’s time en utero, then April will make the most of it. She wants maternity pictures, plaster casts of the baby’s footprints, and an adorable layette. She’s letting the baby listen to her favorite songs, singing to her, and making certain that she knows she is loved.

There is nothing, nothing that I would rather do than curl up beside April and read Let’s Get a Pup, Said Kate loudly to my granddaughter, to cheerfully chirp, “What a brand new one?/With the wrapping still on?” and to let that baby learn my voice. But I can’t stop sobbing long enough to read a book. I can’t talk for more than one minute about maternity pictures or help April shop for the right dress. I can’t stay in the baby section of any store for more than thirty seconds before the air leaves the room. I can’t share in my daughter’s fragile joy because I am still gathering the pieces of my broken heart. 

There is no instant fix for this. I’ve been trying to tell myself, “I can do all things through Christ who strengthens me,” but I’m finding that, for me, that verse has been stripped to something akin to “I can live another day, and perhaps be kind to people.” I can’t do much more than that right now. I cannot be all that my daughter needs me to be. 

12959564_10208178114863308_601819068_oBut I want you to know, my grandbaby now has a layette. A former student’s mother took April to lunch last week; afterwards they shopped in Belk’s, where April selected a pink dress and bonnet set for Stephanie Grace.  The student’s great aunt, whom April has never met, has also crocheted the baby a blanket.

My daughter has her professional maternity pictures. A former coworker volunteered to spend the last day of her spring break doing a beach photo shoot. In addition to having pictures to cherish, April will always remember the flower crown she wore, the wind whipping her dress, and the nearby wedding that was close enough to hear.

She has a lovely, long maternity dress. One of her elementary school classmates, Caitlyn, loaned April the dress she’d used for her own cotton-field maternity shots. When we went to fetch the dress, Caitlyn sat holding her newborn, whom we’d thought would grow up alongside Stephanie Grace. I marveled at our peace in the room.

She has freshly cut and curled hair. Our hairdresser, whom I have known for over thirty years, made sure that April felt special and looked beautiful for her photos, refusing payment. “She said it was her gift to me,” April explained.

Yesterday afternoon, as April was dropped off after the photo session, we got to sneak a peek at some of the shots. She beamed peacefully onscreen, totally relaxed, trusting God and enjoying the moment. She was beautiful and radiant and loved. She’d accomplished one mission, ticked one item off the To Do list; her pregnancy was, in at least one way, normal and fun.

My part in all this? Well, I had made the phone call for the hair appointment and suggested a pink bow. That’s it. Because I could not do any more, my friends did Much More. They enthused and rejoiced and clucked over April. They smiled and laughed and chatted. They made everything better. 

12968095_920310824764179_7958268002363552032_oLast night, as I was once again wishing my failures away, I thought about that verse in a different light. What if the words “in others” were included? “I can do all things through Christ [in others] who strengthens me” seems a bit more reflective of the way I’m living now. The funny texts, sweet cards, and late night phone calls from friends strengthen me. The Bible devotional a friend gave me months ago feeds me daily. My husband’s patience with me and my daughters’ understanding show me God’s grace. No one is mad that I cannot do what they can; they are simply picking up my load and going forward, then looking back to make sure I’m still straggling along.

This is the only way I will survive this journey: through the Christ in others, ministering to me. Though I wish I could lead the pack and plow confidently ahead, in accepting my current weakness, I am seeing other’s strengths.

I may be lagging behind, lost in “What ifs” and exhausted tears, but I’m still at least journeying toward the finish line that I don’t want to reach. I don’t want to go there; none of us do. But with our friends we are moving forward; through their love, we are all moving onward.

Myself included.

 

 

Cappello Rosa

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I have seen photos of adorable skull-less babies

With perfect hands and match-tip fingernails

Grasping and holding. Saying hello.

Baby, will you be be closed-or-open-eyed?

These babies with fancy hats–

Pink crowns, Santa caps, bonnets of love–

Hiding the horrific known.

I promise you a soft hat and proper bandages.

Babies waving braceleted-arms pink and healthy

Against their white swaddles and reassurances:

Denied ponies, tricycles, and redwagon rides–

yet begifted–bedecked with glories and trinkets of love.

Baby, will you please live a little while?

Let our delivery room hold

A baby simply blowing spit bubbles,

Resting dimple-cheeked in loving arms.

Before leaving, let her

Bellow and caterwaul her opinion

Of all this Unfairness.

Yell, baby. Yell. All you want.  

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Creeping Toward Joy: Rejoicing in Unplanned Pregnancy (Casi la Alegría)

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When my elder daughter told us she was pregnant, my husband and I, both school teachers, took the news well. There was no shouting or cursing. Nothing was broken or smashed. We didn’t call her names, and no one said anything that they will regret twenty-five years from now. Mostly, my memories of that December night are of April’s sorrowful weeping, long hugs, and vague reassurance.

Still, we are school teachers–between us, we possess almost every typical teacher trait. Greg accepts no excuses; I’ll accept your excuses and give you a cookie, too. Greg better not see your cell phone during class, while I’ll loan you my charger. He is matter-of-fact, and I’m a hugging cheek-pincher. In our eighteen plus years in the classroom, we’ve seen students struggle. Struggle a lot, with hard things like depression, drugs, alcohol, and crisis pregnancies. As a result, we have had frequent dinnertime conversations with our daughters about decisions and consequences. We have had the frankest of talks.  Chatting at school with students about their hurts and heartbreaks allows us to freely do the same at home. Teachers are, in many ways, some of the realest people out there. We tried to be real with our daughters.

And, still: Pregnant.

For a veteran South Georgia teacher, an unwed pregnant daughter is a bit of a dilemma. (It was somewhat fortunate that we’d mostly quit going to church–since we were likely considered among The Backslidden, maybe such a faux pas would be more easily forgiven.)  It wasn’t news I wanted to shout from the rooftops, but our family is pretty honest about our battles. I told enough close friends at work to make the early days bearable; at night, I would Google things like “Christian unwed pregnant daughter” and read about grace and sin.

I wasn’t feeling entirely gracious, but neither did I feel like I needed to gather the younger children and talk about their sister’s sin, as one site urged. Greg, of course, felt none of my discomfiture, saying, “I’m not a failure. She’s 21. I raised her to adulthood. I did my job.”

How I wished I had his clarity. I occupied a sort of middle ground, where on one side of the scale I stacked all the talks about birth control and sex; on the other side was my general love of babies. Surprisingly, although my classroom and my Facebook wall are plastered with pictures of my former students’ babies, I just couldn’t get to Baby Excitement. I was stuck, firmly, in quasi-resentment.  Greg and I and our small house had no room for a fifth person, especially one who cried in the night. A two-time cancer survivor, my husband had even confessed, “I just wanted to live out the rest of my life in peace.” We would soon be trading afternoon sweet tea on the patio for bottles and a playpen. Delight just wasn’t there.

Friends took our mixed feelings in stride; they were supportive of all of us when we decided that April would move to The Living Vine and focus on the pregnancy. The space allowed us to begin to regroup. When neighbors put a changing table and toys in the garage, Greg and I both felt our first positive emotion about the pregnancy. Discovering the Christmas clearance rack at Macy’s helped bring out a little of the grandma in me, and later, when I bought the baby a sweatshirt that proclaimed “My Heart Is So Happy,” I prayed that my own heart would soon be.

Although we were often stopping to catch our breath, we were creeping toward joy.

And then–anencephaly–a hurricane in a word. Category five. Everything leveled. Obliterated.

I gathered our girl and her heartbreak and brought them home, where we now discuss cremation instead of child-proofing and funeral services instead of christenings.

Tonight, I texted a dear friend to tell him that April has decided to name the baby Stephanie Grace, after his first wife, who died of breast cancer, and my phone soon rung in my hand.

He was kind. He said the things everyone has, throwing in a few dark-humored jokes that people who’ve gone through Much together can tell one another. We laughed. And then, he said it. The most honest of truths: “Three months ago you couldn’t take her pregnancy for a different reason.”

To think: we couldn’t do delight.

 

 

 

 

 

 

 

 

 

 

 

 

 

Inconnaissable

 

We are in the life raft–

Having walked an unexpected plank.

Fallen. Shattered. Piled close.

 

Keelhauling seems kinder.

(Barnacles across our backs

Better than this heartbreak.)

We have no oxygen, at any rate.

 

Months mast-climbing now wasted;

the crow’s nest meaningless.

A formidable, sandless shore

(Still, certainly, with its treasures)

Awaits us now, black-rocked.

We dare not look or think too long.

 

Decades of gathered ballast

Bilge-hidden for such a day

(Godcan/Godloves/Godhears)

Discharge, trickle, and sustain.

 

The cannons boom. “Certainly Lethal.”

Foremast, mainmast, mizzenmast:

All are tangled. Torn, destroyed.

And the wind will show no mercy.

 

135 days of Unknown await.

 

Surely we will again sleep and breathe and eat.

But the waves are high; our vessel weak.

 

And the voyage is so long.

 

 

 

 

 

 

 

 

 

 

Angustia/La Cara de Sapo

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A list of things I have survived: hydrocephalus at birth; pneumonia at age six; a childhood marathon of parental alcoholism, prescription drug-addiction, and manic depression; my parents’ divorce; Bullying (note the capital B); the usual heart-breaking string of high school and college love triangles and unrequited/worthwhile loves; two miscarriages; a disrupted adoption; a second, wrenching failed adoption in which relatives showed up at the last moment to whisk the baby away; caring for 93 foster children, including—simultaneously–five under the age of two and a blind, brain-damaged, wheel-chair bound, Daddy-shaken toddler; my husband’s leukemia diagnosis; a cross-country move with two children for Greg’s subsequent bone marrow transplant; bearing witness to the deaths of 21 people–among them children and dear friends–in the Seattle hospital; a DFCS investigation; the death of my best friend from breast cancer; deaths of loved ones; parenting a special needs, autistic daughter;  parenting a profoundly gifted daughter, who insists I include her mental breakdown, incurred after 72 hours with no sleep, because she DID have one; navigating the community resistance to one daughter’s interracial dating relationship; a compound fracture of my leg followed by six bed-bound months of convalescence—a time during which my husband was diagnosed with his second cancer, caused by the treatment of the first; a cross-country flight with a broken leg—and the required groping by the TSA; and, finally, the financial ruin that is the most certain and faithful of companions to cancer. 

      A list of things I may not survive: my elder daughter’s unplanned pregnancy.

 

I wrote those words exactly two months ago, on my elder daughter’s first day in a maternity home two hours away. I was a rank amateur in Dark Days, but I didn’t know that then.

 

Today, I felt my grandchild’s kick for the first time–thrilling, lovely, and sweet.

Yesterday, we were told that this child would live only a few moments, perhaps hours.

 

In late February at our last visit, April said I could accompany her to her anatomy sonogram, when she hoped to find out the baby’s gender. At her initial sonogram, early in the pregnancy, I had gone with her–but, when they called her name in the waiting room, I found that my legs wouldn’t work. With two miscarried babies, I couldn’t bear the pain of hearing, “There is no heartbeat,” spoken to my daughter.

A second sonogram in the second trimester–the gender reveal!–was a joyous lure, a chance to begin to repair some of the rifts and rends initially caused by the surprise pregnancy. The maternity home authorized my presence, and when I arrived, several staffers remarked that my accompaniment of April was “really unusual” and “not something we usually do.” They even allowed me to drive her, since the regular driver was ill.

The drive to the hospital was short; the wait in the sonographer’s lobby was, too. A pretty brunette in yoga gear made small talk with us, drinking from her “It’s a Girl” water bottle that the office was known for distributing. She’d found out her baby’s gender the week before.  As we were called back, I thought to myself, “It can’t be good that she’s back so soon. Poor thing.

The small sonography room was well-lit, with  a large computer screen on the wall opposite the exam table and chairs. Everything about the scan was quick and high def, but I couldn’t see anything that looked familiar or right. There were lots and lots of bones. I commented that I couldn’t see anything but the spine, and the lady replied, “Bones show up brighter.” She was busy and silent. I was clueless. I searched for curves that I knew, and, finding none, watched idly as the words “stomach” and “femur” were typed upon the screen.

Sonographers, of course, are poker-faced, trained to tell patients nothing. But, finally, she said, “April, your amniotic fluid is really low,” and printed a stream of photos, heading for the nearest doctor. Ignoring the multitude of “no cell phones allowed” signs, I began googling. Oligohydramnios. No kidneys?

I was still reading when the contingent arrived with their brusque introductions. The sweet, petite doctor said, “April, I’m not sure it’s anencephaly, but the cranium isn’t completely closed over the brain.” She explained that the neonatologist downstairs had cleared a spot and would see us immediately.

Anyone with the life experiences we have had knows that when you become the building’s instant VIP, your world is about to crumble. We were whisked out a back door and somehow got downstairs, though I still couldn’t tell you if an elevator or stairs were involved.

In the waiting room, April called the maternity home on my cell phone, requesting reinforcements. I forged her signatures on multiple mercifully short forms as she wept in a plush chair. Other people averted their gazes, and we were whisked once again to the back. Away.

April climbed up on the table. The new sonographer was efficient and kind. The screen was larger, and a brutal fact became clearer: what I was seeing that looked so unfamiliar was, in all likelihood, the baby’s face. The cranium trailing behind it was distended.

The femur was measured again. (The baby has beautiful femurs.)

The doctor came in. Earlier, when our day was normal, we had unknowingly ridden alone with him on the elevator, where I’d closed the door instead of holding it for some children approaching in the distance. I’d jokingly said, “We don’t need any screaming children in this elevator. We are praying this baby isn’t a crier. We have a small house.”

Now, this stranger, with his legion of mute sidekicks, was delivering sad news. He matter-of-factly destroyed our hopes.

The first word in his arsenal was “lethal.” We didn’t wither or crack.

“Anencephaly.”

“You can see there is no forehead.”

“The uterus likely created a band restricting the head.”

“Unsurvivable.”

“Perhaps a genetic defect.”

We still were largely unfazed. April was weeping, but there were no histrionics. At some point, the maternity home’s representative appeared, coming in so unobtrusively that even the doctor was a bit rattled. She was just there. Stolid and loving. I continued peppering the doctor with questions, which were reasonably intelligent because of my exposure, via Facebook, to Layla Sky and Shane.

I guess my manner is led this doctor, who had been receiving simultaneous A+’s in Bedside Manner and The Delivering of Devastating News, to look me in the eye and ask, “Do you see the toad face?”

I nodded. In fact, I did see the large eyes. I also saw my grandchild. And my daughter’s breaking heart.

 

I have, in my younger daughter’s baby book, a medical report that noted we “refuse[d] to consider termination.” My older daughter was so swift and firm in her refusal that I imagine the medical stenographer may have typed the words in boldface for her.

 

We returned to the maternity home, where April was hugged and patted and prayed for by her surrogate family. The other pregnant girls were quiet, weeping and reassuring. The staffers discreetly packed and loaded our van. They said right things, and we headed home, where my husband and younger daughter waited. They, too, had blindly expected only the gender–a fact that the baby had refused to share with any doctor. A surprise we still await.

 

April has eighteen weeks or so to go, if she makes it to her due date. Despite the fact that the baby could die at any time, she was singing as she did her chores today, singing just as she always has.

And all the while, the baby, whose cry we may never hear, kicked along inside her.