“The Value of a Child.”

First, I’d like to say thank you to Megan Brightwell and to all those who have labored

to bring this conference about. It is truly exciting for me to be here—all the way

from Hawaii—and to be able to enter into this conversation with all of you. And I

also want to say that I am delighted to see that, so many of you are men, because

infant death is not a women’s issue. It is a cosmic issue.

When any child dies—in the womb, at birth, this kind of death raises difficult

questions about life and God. I think it is fair to say that when a child dies in the

womb—or really, when any child dies—nature has turned upside down. As

Orthodox Christians we believe all death is unnatural, that it was not part of the

original plan. But the death of a child could perhaps be called super-unnatural. It is

something we never can, and never should get used to. A Jewish friend of mine told

me that when her brother died, the rabbi said that the original prayer books did not

even include services for the death of a child, because this kind of thing is not

supposed to happen.

But when it does happen—and it happens quite a lot—to twenty to thirty percent of

mothers, depending on age—it is the beginning of a journey, a journey that is both

external and internal, a journey that no parent would ever choose. Perhaps one of

the worst parts of this journey is that it is often made in silence. While the start

point is very clear—in it begins with the moment of conception—the end point is

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rarely defined. This kind of grief can stretch over a lifetime. Last night I heard about

a woman who works in hospice. When she visits female patients on their deathbeds,

she is often surprised to learn that the first thing they want to talk about is their

own miscarriages. They may have occurred sixty years ago, but as these patients

prepare for their own death, they are thinking about those babies they long for.

In The Eldest Child by Maeve Brennan, she describes a mother grappling with the

death of her 3-day-old infant:

At the time he died, she said that she would never get used to it, and what she meant by

that was that as long as she lived she would never accept what had happened in the

mechanical subdued way the rest of them had accepted it. . . They behaved as though

what had happened was finished, as though some ordinary event had taken place and

come to an end in a natural way. There had not been an ordinary event, and it had not

come to and end.

The wound remains, and I think that the very ache must remain because it is

actually leading us somewhere. It is leading us toward the one place where some

real resolution is possible—eternity.

So this is a journey that is in many ways endless, and there is no road map for those

who undertake it. But I would say that there are some signposts along the way,

experiences that are common, if not universal, amongst grieving parents, and this is

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what I want to focus on today. I want to discuss to discuss something that is both

general and specific—I want to outline three obstacles faced by grieving parents,

whatever their religious or cultural background, and also three steppingstones, or

assets, that you as Eastern Orthodox Christian physicians, nurses, pastors and

therapists can offer to those in your care.

But first, a little bit about my own journey—or why I came to write the book,

“Naming the Child.”

My parents first-born son, Garrison, died when he was just a few weeks old. He was

born in 1970, in Washington DC in a world that was much less aware of the grieving

process. When my brother was born, he was diagnosed with a severe case of spina

bifida. My parents were told to leave him at the hospital to die. In their shock, grief

and confusion, they did as they were told. Although I never met or even saw a photo

of my brother, I have always longed to know him. I wondered (and I hoped) that I

would have a chance to meet him in the world to come.

As an adult, when friends experienced the death of a baby in the womb or within the

first year, I was always drawn to them. I wanted to sit with them and hear their

stories. The more stories I heard, the more I realized that there were common

elements, or common struggles (but also hidden graces and supernatural

experiences) that were present in many of the stories.

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When I heard Orthodox ethicist Fr. John Breck speak about the healing power of

naming these infants, the title of the book, Naming the Child, dropped into my head. I

had the title. Now all that I had to do was write the book. But it took me more than a

decade to work up the courage to begin to write the book. It is a fearful thing to try

to write about something that is so often shrouded in silence, and also to try to be

true to such deep pain, not to mention the complexity of all the medical situations

that I would attempt to detail. And so I think for my first stumbling block, I would

like to talk about fear, because I’ve certainly wrestled with it quite a bit, and I think

that all caregivers are forced to grapple with it.

1) FEAR

Early on in the process of writing Naming the Child, I had a dream that there was a

room in my house that I never knew existed. I entered the room and inside of the

room I found a manila envelope. I opened the envelope and inside the envelope I

found something I’d never seen before: photos of my brother Garrison, and his birth

certificate with footprints. I was standing there in the dream poring over these

documents when a man walked into the room. I was caught. From his expression I

could see that he was angry. He wanted me out of that room. NOW.

When I woke from the dream I understood that a lot of the fear I faced in writing the

book had to do with the fact that the topic of death still has a lot of taboo. It is a

forbidden room. And there is no topic that is more forbidden or more taboo than the

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death of an infant. But all of us who live on this earth ultimately have no choice: we

will all face the death of someone we love, and we all must grapple with our own

deaths.

Another fear that I know is huge is the fear of saying the wrong thing. This is a

legitimate fear because there are so many wrong things that can be said.

There is a poem in my book by Jan Cosby that offers a sobering glimpse into this.

This poem is called, “Nobody Knew You,” but it could just as easily be called, “What

Not to Say.”

Nobody Knew You

“Sorry about the miscarriage dear, but you couldn’t have been very far along.”

…existed.

Nobody knew you

“It’s not as though you lost an actual person.”

…were real.

Nobody knew you

“Well it probably wasn’t a viable fetus. It’s all for the best.”

…were perfect.

Nobody knew you

“You can always have another.”

…were unique.

Nobody knew you

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“You already have a beautiful child. Be happy!”

…were loved for yourself.

Nobody knew you

…but us.

And we will always remember

…you.

When you consider all of the things that can be hurtful, you can understand why so

many people run the other direction when the death of an infant occurs. It can be

extremely awkward to try figure out what to say in these situations. And from

talking to parents while working on book, I understand now that the language that

is often used to talk about death—or really to soften it—can be part of the problem.

This came up last night—somebody here raised the question of miscarriage. I only

included the word in book because it is recognizable. But I don’t like any term that

connotes blame. Even talking about early child loss can be problematic.

One of the mothers I interviewed told me that she could not stand it when people

said that she was sorry that she “lost the baby.” She that the so much of the language

we use surround infant death implicitly blames the mother. Like if the mother had

been paying more attention, she wouldn’t have “lost her baby.” She said, “I did not

lose my baby. He died.”

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I even cringe when I hear the word, “Passed away.” It seems like it is an attempt to

soften or whitewash the reality of death. That’s one thing I can say for the Orthodox:

our funerals are a very honest attempt to grapple with the real pain and ugliness

that is inherent in death.

C.S. Lewis said it well:

“It is hard to have patience with people who say, ‘There is no death’ or ‘Death doesn’t

matter.’ There is death. And whatever it is matters. And whatever happens has

consequences, and it and they are irrevocable and irreversible. You might as well say

that birth doesn’t matter.”

I think that in so many situations, the very best thing, the most loving response is

simply to be present with the other person in the pain. And the other part of that is

having the courage to let our own tears flow. One time I gave a talk in Minnesota at a

church. A few rows back, there was a woman with a wide-brimmed hat. I could see

her perfectly. But as I shared some of the stories that I’d heard, I watched her tip the

rim of her hat forward to cover her eyes so that people couldn’t see that she was

crying. I really didn’t get it. Why was she was embarrassed about her tears? Tears

are the correct emotional response, and they are also the correct theological

response. What did Jesus do when he learned that Lazarus had died? He wept.

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2) ISOLATION

Sometimes bereaved parents feel isolated because such awkwardness surrounds

their situation. Miscarriage can be especially isolating because it sometimes occurs

before the pregnancy is public, so those that learn of it don’t really know the

protocol. Should you say something or not? And every experience of grief is unique.

Some parents want to be left alone, and others may fear being left alone. These

conversations can be awkward, embarrassing and raw.

C.S. Lewis described this phenomenon well in his book A Grief Observed.

An odd by-product of my loss is that I’m aware of being an embarrassment to

everyone I meet. At work, at the club, in the street, I see people, as they

approach me, trying to make up their minds whether they’ll ‘say something

about it’ or not. I hate it if they do, and if they don’t. Some funk it altogether. R.

has been avoiding me for a week. I like best the well brought-up young men,

almost boys, who walk up to me as if I were a dentist, turn very red, get it over,

and then edge away to the bar as quickly as they decently can. Perhaps the

bereaved ought to be isolated in special settlements like lepers.

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3) JUDGEMENT

Another obstacle on the journey can be the fear of being judged. Especially

after a miscarriage occurs, the parents may be silently wracking their brains

to figure out the cause. They may be blaming each other. Sometimes doctors

don’t help, either. One of the women I interviewed for the book told me that

early in her pregnancy, she asked her doctor if it was safe to travel by plane.

He told her it was. But then, when the bleeding began just after a long,

international flight, he said, “But why did you fly?” This is the kind of sentence

we don’t want to level on grieving parents.

The same could be said for those who are beginning to process grief

surrounding an abortion. The fear of being judged for this choice could

prevent a parent from openly sharing their experience. I think is always

important to realize that most people already questioning themselves in the

midst of this pain. In almost every case, I think the best thing we can offer is a

willingness to walk alongside the grieving person, almost as a second self,

allowing them to process their experience in their own time and way.

Maeve Brennan describes this grieving mother, struggling with those who tell her

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the death was God's will:

When she spoke for any length of time they always silenced her by telling her it was

God's will. She had accepted God's will all her life without argument, and she was not

arguing now, but she knew that what had happened was not finished and she was sure

that it was not God's will that she not be left in this bewilderment.... All she wanted to

do was say how she felt, but they mentioned God's will as if they were slamming a door

between her and some territory that was forbidden to her.

Now I’d like to transition to three stepping stones, or unique assets that we

as Eastern Orthodox caregivers can offer to bereaved parents. The first is a long

view of time.

1) A LONG VIEW OF TIME

I met for coffee this week with a friend from Hospice of Kona, she said that she was

recently asked, “How long does it take to get over the death of a loved one?” She

said, “Well, I don’t think you ever really get over a death.” But I don’t actually thing

this about getting over a death. I think the grieving process is about finding ways to

integrate the death.

I know—I think everyone in this room knows—that where society really fails

bereaved parents, and mourners in general, is that we push people to move things

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along at an unnatural pace. Many well-meaning family members would like to

impose some kind of artificial timeline on the grieving process. It can be

uncomfortable to linger with death and all the associated emotions for too long. But

those who have truly grieved for someone they love recognize that this journey has

no timeline.

It is a process that you do not control, certainly, it is not linear, but cyclical. Long

after the raw season, an experience can trigger fresh grief. In particular,

anniversaries can be intense. One of the women I interviewed, Rachelle Mee-

Chapman, told me that she had the strangest experience three years after she gave

birth to her stillborn son. She was eating lunch alone when she felt this intense pain,

much like a labor. She didn’t understand what had happened to her until she was in

therapy and her psychologist explained that she had experienced a physical

memory. This was her body’s attempt to make sense of what had happened.

This is certainly a component of the death of a child—and parenting in general—it is

a physical experience. Parenting is a total body experience, especially for the

woman, who has felt the child grow in her and (in most cases) experienced a labor

as real as any other with all of the associated post-partum hormones and pain. Many

of the women I interviewed for my book were horrified to discover that their milk

came in anyway, even when there was no infant to feed.

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When I think about the time it takes to integrate this kind of death, the way that

even our bodies have to work at it, I think that the Orthodox really have something

to offer. Not only do we see death—and perhaps the progression into the afterlife—

as a process, marked by our forty-day memorials, and yearly prayers on the

anniversary—truly the glory of Orthodoxy is that there is no rush—we also

understand that it helps to do something. In the context of the church, we bake

koliva and light candles, we sprinkle dirt on caskets and we touch the body of our

loved one. We say goodbye with our hands and we let our bodies grieve, too.

This easily translates into the next steppingstone, or what we as Orthodox

caregivers offer to those who grieve—we understand hands-on-love. We live it.

Even after death has occurred, we recognize and cherish the body. It is sacred. As

my friend Tawnya said to me last night, “Even after a death has occurred, we

recognize that there is still something precious in the room, and we honor it.”

2) HANDS-ON LOVE

My friend Tawnya—who is here in the front row and graciously has allowed me to

share her story with all of you—experienced the death of her son when he was just

48 hours old. Although she was exhausted from a traumatic labor and distraught at

the news that her son was going to die, although she was fighting to stay awake, she

did what was most natural to her after her son was born. She opened her shirt and

loosened his swaddling and she let him lean against her chest.

This is how she described the experience:

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His sweet baby body. It makes life more real to me. Loving touch confirms the

sacredness of life. But it was painful and hard to hold him, waiting for life to end;

hearing the labor of his breathing, knowing it could—and would—stop at any

moment…I could see why you would want to protect someone from that—it was hard

to hold him. To look on the suffering of your sweet innocent baby, to know that he was

hurting, to know that he could barely take his next breath—who wants to see that?

And yet to miss it would have been to deprive myself, not of some great memory, but of

the ability to do the one small thing I could do for my son in his life.”

I believe that we need to facilitate opportunities for parents to touch and see their

babies, if it is possible. It is good to have the opportunity to bathe your baby, to be

gently encouraged to open their eyes, if they are closed.

One of the women I interviewed for the book, Dr. Joanne Cacciatore, said that

hospitals and medical professionals have an ethical obligation to facilitate these

farewell rituals, while never pressuring parents to hold their babies if they are

uncomfortable with it.

She said that in many cases when parents don’t want to hold their babies, what is

usually holding them back is something I mentioned earlier in this talk: Fear. To

help parents overcome the fear, she will sit with them in their hospital room. She

will talk to them for a time, and then, if they are not interacting with their baby at all,

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she will say, “It is alright if you don’t want to hold you baby, but can I hold your

baby? She that in every case, no matter what the cultural or religious background of

the mother, when they saw her hold their baby, they said, “Can I hold my baby?”

3) LIFE REIGNS

And finally, I think the very most valuable asset that we as Orthodox Christian

caregivers bring to the conversation is the conviction that life is stronger than

death. I think Orthodoxy holds this balance so beautifully. We don’t whitewash the

reality of death, but we also very serious about the Resurrection. Life Reigns!

I’ve added to your folders one of my favorite articles of all time, Born toward Dying

by Fr. Richard John Neuhaus. In it, he describes his own near-death-experience as he

grapples with the reality that death permeates all of our lives. He says that death is

the horizon that we go to sleep against and that each day we wake to find that the

horizon has grown closer.

He writes:

A measure of reticence and silence is in order. There is a time simply to be present to

death—whether one’s own or that of others—without any felt urgencies about doing

something about it or getting over it. The Preacher had it right: "For everything there

is a season, and a time for every matter under heaven: a time to be born, and a time to

die . . . a time to mourn, and a time to dance." The time of mourning should be given its

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due. One may be permitted to wonder about the wisdom of contemporary funeral rites

that hurry to the dancing, displacing sorrow with the determined affirmation of

resurrection hope, supplying a ready answer to a question that has not been given time

to understand itself.

So we engage death in that spirit, without softening any of the ugly realities. It is

what it is, unwelcomed and unplanned. We recoil at it. We remember that death was

not part of the original plan.

But even as we stare straight into the horror of death, we offer the profound

conviction that life is stronger than death. Last night I asked my friend Tawnya for

permission to share her story. Her first child, Samuel, died of a chromosomal

abnormality. Because of this, she and her husband were encouraged to get genetic

testing to see if they might be carriers and if future children might be at risk. At the

time, my husband—an Orthodox priest—told them to not be afraid. He said that

sometimes even when life is more fragile or wounded than we might have hoped,

life is still bigger than death.

Tawyna and Nick made the choice not to get genetic testing because they decided

that the information may not be helpful in the end. She said that they asked

themselves, “Would this be life-giving information?” and finally concluded that it

wouldn’t be. This is a question I think we should all ask ourselves as we navigate the

complex terrain of genetic testing.

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Now about death, and the church, and the conviction that life reigns, I realize that I

haven’t said anything yet about abortion. I very carefully tiptoed around that subject

in my book, actually, because I was hoping that women who had had abortions could

find something healing in my book. I was hoping that those from a variety of

positions on the subject would find common ground in the experience of grief,

without the polarizing pro-life/pro-choice conversation.

But I had an experience soon after the book was published that seemed to witness

to this reality that life is stronger than death. I was at Fr. George Gray’s church in

Portland, Or. St. Nicholas. Just before I got up to speak, Fr. George had the idea that

we do an impromptu service for these babies. Nothing about this was really planned

—he just kind of put it all together.

So he asked those in attendance to write down the names of their babies, and then

we began to pray. I never before (or since) experienced anything like I did that day.

As soon as the prayers began, there was a sense of a—a…I can only say, a “whoosh”

as if we were being surrounded. It seemed to me that the church even looked

brighter, which is why I started snapping photos because I was curious if the change

that had occurred would show up on film. Anyway, as we prayed, there were many,

many tears all around. They were not just tears of grief, but also, maybe, fullness? I

really didn’t know what exactly was happening, until afterward, when two different

mothers came up to me and told me that during the prayers they had a sense that

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the babies that they had aborted were standing with them in prayer. We had been—

in a very real way—joined, by that great cloud of witnesses.

I understood then, that life is stronger than death, and that we bridge the gap—or

sometimes perhaps even these babies walk over that bridge to help us—through

love. Every conversation, every word, every breath we take must be based on love.

And I understood, that even in cases of abortion, death is not the final answer. And

that is perhaps, the ultimate stepping stone for those who are struggling to get back

on their feet. They have to know, we have to know—and live this conviction—that

death is not the end, that life is still bigger than death, bigger than any of the horrors

we may endure in this life. Where there is pain, where there is a sense that we have

failed our children in some way, there is forgiveness and reconciliation, there is

healing beyond what we could ask or imagine.

Last night my friend Tawyna said something else that lingered with me all through

the night. She said that you know that healing has really begun when (years later)

you experience gratitude. Even if was not a journey you ever wanted to take,

gratitude comes when you see where it brought you and what gifts have come into

your life along the way.

In your folders I have also included a small icon of Matushka Olga Michael. I love the

words on her scroll, “God Brings Great Beauty From Complete Devastation.” This is

the other conviction we hold, or the other conviction that holds us. I would like to

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encourage all of you to get to know Matushka Olga, to learn more about her life and

witness. You can learn more about her at www.oholy.net. But for now, I only want to

say that she was a contemporary—she died in 1979, and she was midwife and had a

profound and intuitive love for women facing challenging pregnancies. I think that it

would be great if you all could keep this icon in your offices and share it with those

who are struggling. There are so many situations where there really is no answer,

situations that feel so unnatural and agonizing. But where God is, there is hope, the

hope that He will, in His own perfect time, bring great beauty from the ashes of our

devastation.

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