Monthly Archives: July 2018

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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