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This is the letter we sent on diagnosis:


Dear family –

It is with pleasure and pain that we announce the expected arrival of our newest family member in mid-August. Our much-loved baby has been diagnosed with anencephaly, which means that the skull failed to form properly from the start. There is no known cause, no treatment, and no chance of life beyond the few hours or days we might be lucky enough to get.

As much as we grieve this, we don't grieve as those without hope. Our hope is not for a miraculous recovery – although we would be out of our minds with joy if it happened – but for a celebration of this life and the next. As I shared with some friends last night, the difference between seventy minutes and seventy years is, in light of eternity, rather small. We believe with all of our hearts that he (Owen thinks it is a "he" so we'll stick with that until we know better) is our son regardless of his capacity and deserves to be cherished and enjoyed during his short trip around the block.

Some bare facts, for the interested (if you google it, the images are so often clinical and unloving and worst possible light, so try not to if you can, a good site is anencephalie-info.org):

  • it's an open neural tube defect that occurs in 1 in 1000 pregnancies (most elect for abortion)
  • it's what women are supposed to make sure they get enough folic acid to prevent
  • it's a mechanical, not a genetic problem
  • the forebrain and cerebellum form normally but will be dissolved by contact with amniotic fluid
  • at this point our chance of a live birth is about 75%
  • he will probably breathe on his own and have some reactions - consciousness without a forebrain is disputable
  • his body will be lovely from the nasal bridge down, his eyes large and puffed out, nothing above the eyebrows
  • chance of death – 100%. But then again, that's true for all of us eventually.

We've had a lot of people ask us, "what can we do?" Honestly, at this point, not much besides accept him and enjoy him. His heart is still beating, his little legs kicking away... now is not the time for sadness. Touch my belly, tell me how cute I look pregnant (I do!), ask if I'm craving anything, what his personality seems like, how the kids are thinking and talking about it. Laugh at my gallows humor. Don't feel weird or bad talking about your own pregnancy if you are. Pray for Graham and I for courage and communion and joy as parents of a non-typical child. Pray that Baby Emmett can somehow sense how much he is cared for and that we get to kiss his cheeks while he is alive. Don't worry about saying the wrong thing. There is no wrong this to say.

Later on I may have even more severe polyhydramnios (too much fluid) than I did with my daughter and I might need some practical help and I'm prepared to ask for it or accept it if offered. If you get the chance, come to the hospital and see him, hold him, see if you can tell whether he got my weirdly long palms or Graham's early moustache . Right now we're not planning any kind of funeral but we hope to say a happy goodbye there.

That's about it. Feel free to ask any questions. We already feel so loved and supported by the friends and family that know, and we are glad to count you among them.




This is the letter we sent after he was born:


Friends –

Our son Emmett Michael arrived on Wednesday, March 25. He was three inches long, weighed one ounce, and was born sleeping. I thought I'd share the letter I wrote him.


Emmett –

Lovely little one. I first found out I was pregnant with you on Christmas eve, and planned the big reveal for the next morning. It was hard to keep the secret all night, especially when we placed the baby in the manger and I thought of how vulnerable it had been for Jesus to be born. That morning as your sister opened the present everyone expected to be a baby doll and pulled out that little stick, it slowly dawned on everyone what it was and we shared our delight in you. Best surprise I ever pulled off.

Over the next few months you rang in the new year, sat through multiple book club discussions, rocked out at a G-Love concert, rolled your eyes while your parents smooched, celebrated your brother's birthday, worshipped to the tune of daddy's bass, kicked like it was going out of style, and made me crazy for Entemann's chocolate donuts. We watched you wiggle on the ultrasound screen, the room a little too quiet, the technician concentrating instead of chatting. When the doctor quietly wrote down the names of clinics, I knew that what was expected of us by the medical establishment and by the One who shaped you were two different things. We were stewards of a gift, no more or less than with our other children, and we would love you with all we had for as long as you would stick around. You made us brave with how much we loved you.

Which is not to say it wasn't hard. So, so hard. I can't tell you how many times I cried, how many babies' big, round heads I stared at with envy and anger. But do you know how many people were praying for us, were asking God to transform hurt into healing, were shaping the direction of your parents' hearts? I will never forget how I walked into a support group alone one night, a weeping mess, and as the stories of parents still wracked with pain and hopelessness years after the fact washed over me I remembered that already the only one who loved you more than I could had prepared a place for you that was not the grave; was shaping the perfect, whole body that I could not give you; that grief was real but death had lost its sting. (By the way, did you know your name means "wholeness"? We had picked it before we knew anything about you beyond Owen's assurance that you were a boy, and now it seems as though it was less a name than a promise.) But even beyond this current trial I realized that no matter what happens to me, my life could never be a tragedy because it is already a victory song by the one that had saved us both. On the way home that evening you and I danced in the grocery store.

I thought we'd have longer, I did. You never fit even the tiniest hat I knit for you. It turns out you came the same week as the dogwood flowers, sudden and brief and beautiful, my little bird.

I miss you so much. I think you know how much I loved being your mama. Thank you for letting me.


Thank you for sharing this journey with us. We praise the God who made us able to love him as he deserved, and who surrounded us with people who have lifted our heads and held our hands.

The Farras



Last updated April 2, 2019