The First Year

After Olivia died, my chest hurt and I felt heavy all over, as if my body was made of substances more substantial than flesh, bone, and sinew. I questioned myself torturously, second-guessing everything I had done before and during her illness. I had many regrets, and some were deep. I questioned whether we should have adopted another child after Olivia, and even regretted the accidental conception of our twins. All I could think about during the first few weeks was “what if” and “if only.”

swans00 by you.I was also grateful. I felt as overwhelmed by gratitude as I was by grief, thanking God daily that we’d been able to have Olivia at all. I was surprised to discover that I would accept Olivia back at any price, even in a coma, even as a child needing total care. I longed to see her live body again, to feel her hand in mine, to smell the smell of her.

Though we had anticipated and planned Olivia’s death, we hadn’t planned for what life without Olivia would be like; this was unimaginable. We all went through life in slow motion, those first few months after her death. Everyone else in the world seemed happy, sane, and successful. We suffered. I could not tell whether it was sorrow or guilt that felt so heavy in my body.

For months after Olivia’s death, I was terrified of losing another child.

I read Kaddish, Leon Wiesenhalter’s book about his grief the year after his father’s death. Wiesenhalter was a mostly unobservant Jew whose grief compelled him to observe his religion’s rituals of mourning, daily swans02 by you.attending synagogue to recite the Kaddish, the traditional Jewish prayers of mourning. The reading was sometimes slow going because of all the rabbinical teachings; but it was compelling and a very good read. I found myself enraged with Martin Luther for the Protestant Reformation, because before the Reformation, the early Christian church followed many Jewish customs. We had lost these thanks to Martin Luther, Zwingli, and other Reformers, and although I had been a practicing Protestant for most of my Christian life, I found myself deeply regretting the devastating loss of rituals within the Christian church, particularly those for mourning. The modern Christian was supposed to bury a child and then return to the world of the living and be normal. I reflected that a new mother has as many as six weeks of maternity leave or tender care following a child’s birth; after surgery, one is prescribed a set amount of time for recuperating. But when death comes, there is nothing.

For months after my daughter died, every day I woke up feeling heaviness and chest pain. Tears dithered behind my eyes constantly. Some people-even family members and old friends-avoided us. It seemed that we were allowed a week or two of grace period, after which we were expected to return to our normal strength. Death had birthed us into a caste of undesirables, and our isolation was great sometimes.

swans06 by you.I constantly felt a tender ache of longing for my missing child. The finality of death was stunning and cruel, something I hadn’t expected to experience so bitterly, because I was a Christian with every hope in an afterlife.

I expected to see my daughter here and there, and felt sometimes that she might be just in the next room.

I wasn’t myself mentally. I had taken a break from work on my master of arts in literature, and one day received a paper back that I could not remember writing at all. And yet, there it was in my hand, marked “A,” and dated two weeks after my daughter’s death. I sat there dumbly, looking at the red “A,” feeling crazy.

My children had dreams in which their sister was a glorious, light-filled being; I dreamed of Olivia ill, and dying. We took her bed apart two months after she died, and I cried for hours afterward. By the end of the second month after Olivia’s death, I was carrying a million wonderful things about her, ten bad things, and ten million regrets.

swans05 by you.I joined a grief support group at a local church three or four months after Olivia’s death. It was facilitated by a social worker who had lost her only son in Viet Nam, and whose husband had died of cancer. The facilitator badgered people, particularly those who were recently bereaved. She seemed to have an inner scale for weighing grief, allotting more tolerance to those whose losses were large, and less to those who, in her eyes, were being too sentimental. She could have been a poster child for professionals whose own unresolved problems are projected onto clients. After six weeks, I left the group and asked a local analyst to help me with this stage of my grief, which felt too intensely private to handle elsewhere. I hadn’t the mental or emotional strength to hold that social worker accountable, but I will never forget her. She taught me that I had the strength to protect myself and to keep looking for help until I found what I needed, something I didn’t know with such clarity before Olivia died. I had never experienced such a big loss; I had no idea how I would react in bereavement. Now I knew I would still be, in part, my true self, even during great suffering.

Life went on, and there was something soothing and grounding about schedules and routines. Eight months after Olivia’s death, her birthday came around. I made a photo album of my favorite photographs for her birth mother, and mailed it to her. My heart hurt for hours afterward, and I felt as though I couldn’t breathe, as if the grief would crush me. I felt constant pain, constant guilt, constant relief: pain of missing my Olivia, relief from her constant care, and guilt over feeling relief. How did I do it while she was living? When I looked back, I couldn’t understand how I’d done it, in much the same way that I look at the remains of my daughter’s car after her accident last week and don’t know how they survived.

Landscape by you.The one-year anniversary of Olivia’s death came and went, but not easily. For all the years I had taught and talked about anniversary reactions, I had never understood their power. All of the same feelings I had during the 24 hours of my daughter’s dying and death returned. Later, I looked back and could see how Love had carried and sustained me. I was not bitter, and I wasn’t full of self-pity; I hadn’t used Olivia’s death as a weapon or a shield. Olivia’s life had always challenged and often revealed other people’s neurotic leanings; her death had only magnified this effect. It challenged me in my deepest emotional, psychological and spiritual selves, and I had come through refined.

Tomorrow, I’ll write about the dross of this refining experience.

13 responses to “The First Year”

  1. Karen Avatar

    Eve, I don’t know what to say to your kind post…whatever good you have received from our friendship comes directly from God and has been my pleasure to pass along.

    As for “feeling such a failure”, I say, “Baloney!”, give me a call. XO

  2. Eve Avatar

    Karen. I was shocked to the bone to see you post here. You were such a good friend to us. I’ve been so absent. I’ve been thinking about you constantly lately, but feeling such a failure and so changed since that time that I haven’t called or done anything.

    You have a knack for finding people when they are having transformative experiences. ;o)

    When I think of “Christian,” I think of you, my friend. I’m humbled and grateful every single time I think of you. You did what nobody else seemed to know to do, which was to simply just be there.

  3. Karen Avatar

    Eve, I think of you and of Olivia every August. I’m not surprised that it’s taken this long to write about her death; how can we open that much pain up to be scrutinized?

    I’ve often wondered if sharing my pain with others who didn’t understand (or weren’t sympathetic) would cheapen the gift of grief. I’ve concluded that it’s more important to let others learn what God is willing to do in our lives through the losses we suffer.

    Thanks for letting me relive that time with Olivia and your family. I’ve missed her, too.

  4. henitsirk Avatar

    Sometimes I think we need to reclaim some of the old ways — not in an unconscious way of simply following tradition, but in a conscious recognition of their value. Like the 40 days a mother stays home with her newborn baby. Or the traditions around death that you describe. I’ve always wanted to do an ancestor corner for All Souls Day. Maybe this year I will.

    I’m not surprised that schedules and routines were soothing for you. Rudolf Steiner said, “Rhythm replaces strength,” which I have found to be true in so many ways. Children need rhythms because they can’t develop inner strength and a feeling of security without them. I can see how that would apply to grief as well, allowing you to function on a basic level just from habit.

    I haven’t had anyone close to me die, so I can relate to the feeling of being uncomfortable and not knowing what to say to a bereaved person. I would probably fall back on the practical, bringing meals and such. I think people (me included) forget to rely on basic compassion to guide them in the moment, and to think about the other person instead of our own discomfort.

  5. helenl Avatar

    I’m still reading and learning, Eve. I await your article on crying while writing. I will have something to say about that. But I won’t say until you post.

    I haven’t lost a child but I do identify with the “first year” after losing a parent and -in law.

  6. Eve Avatar

    David, I pity your uncle. It must be painful for him to have, on some unperceived level, his own dormant grief disturbed by those around him who are conscious of their loss.

    I’ve been thinking about how western culture has grown so dead to so much (and don’t get me started on the oh-so-sensible Protestant Reformation again!). I recall judging Catholics and other religions who seemed so superstitious and pagan, lighting candles and saying masses for the dead (ugh!); or how about those goofy Buddhists or Hindu folks, keeping family shrines right in the center of their homes, lighting incense, bowing to the ancestors, and even having the bones of their ancestors inside the household shrine? Or those Korean people, having picnics on the graves of their ancestors? Wow, how pagan can one be?

    Yes, when I was younger I thought just that way, sometimes. But, thank God in heaven, the deeper, symbolic mysteries were always there, too, beckoning for me to dash myself against their rocks. And so I did. Now I wonder at how spiritually ill American westerners must truly be, when we expect ourselves to snap out of it, whatever “it” is, within one or two weeks (usually two, I think) of a major trauma. We move on, just as from one major news story to another. When the story stops being compelling, stops making our hearts race, we stop paying attention. It’s over.

    Although I have no family shrine in my home, I think about it from time to time. I respect cultures who honor their ancestors, and I have a particular sympathy for people, such as adopted people and displaced people, who do not even know anything about their ancestors. Even if we go back to the same original “Eve,” and we do genetically, we still have many unique gifts among our particular family trees.

  7. Eve Avatar

    Deb, oh, I thank you for your honesty, and for underscoring just how difficult and heart-breaking and wonderful, all at once, it is to have a handicapped child. Because we adopted Olivia, we chose to raise a child with disabilities; this relieved us, I think, only of any guilt we might have had about how we managed to have a child with disabilities. That was the only difference I’ve been able to perceive between us as adoptive parents, and other parents who give birth to children with challenges.

    Many people said to our faces, “she’s better off,” and “at least you don’t have the burden of her care any more” after Olivia died. And her care was a burden. She was paralyzed from the chest down, so had to be lifted and needed a great deal of physical help. She was EMH, so never really learned to read or write much; but she did math well and was a genius socially. Nobody who met her could tell that she was EMH because she was incredibly socially adept. She was also very joyful and not given to many moods.

    When we adopted Olivia, we thought she simply would be physically challenged, not mentally, as she was barely two years old and seemed cognitively on track. We had dreams of all she would do in the future, as an adult. Maybe she’d become a social worker or teacher. But when she was about four or five years old, we were told that she would never be anything like that, as she was mentally retarded. So we went through a year or so of grief over that–and, yes, denial was part of it. I really didn’t believe it, living with her. But by the end of first grade it was obvious that she really was EMH. The older she grew, the more apparent it became.

    You cry while you write, which is something I’m going to write about today: one doesn’t really ever “heal,” does one? I’m not sure we do. I think we just build something around that wound that may heal partially, but it’s always tender. Kind of like Jacob wrestling with the angel, but walking with a limp the rest of his life after his hip was put out of joint. There are always griefs. There is always the void of the person who is gone, even if that person is the imaginary “what might have been.” We see how other people’s lives work and we wonder why ours didn’t get to work that way. Everything is some kind of a trade-off, and I think I often want perfection, nirvana, heaven on earth. And it ain’t here.

    Had Olivia lived, we’d have an entirely different set of problems. So when I am relieved that her suffering is over, and that our very hard work on her behalf is over, of course I have guilt; because there is another part that, as I wrote, would want her back at any price. ANY. Therefore, I can no longer judge or pity parents who keep their children alive when they are in comas or in vegetative states. People do what they feel they must do, and outsiders can’t understand that kind of love. We assume it can’t be love. But I’m no longer sure.

  8. David Avatar

    This continues to be an amazing series of posts, so important, so profoundly important, that if I could stop every single person I see on the street and force them to read and understand this writing, I could do it.

    The way our society treats grief and loss is so unnatural, and so unkind. A cousin of mine in Canada died of a brain tumor about three years ago, after a horrifying struggle, and it really hurt me to see that my uncle, her father, expected my aunt to be “done” with grieving after a couple of weeks. It just … damn. It’s so cowardly. When I write to her, which I do sometimes, I make a point to mention that I still think about Dianne. Maybe that’s a bad idea. Maybe it reminds her too much that Dianne is gone. I don’t think so, though. I hope it reminds her that Dianne lived, and that she was precious while she was here.

  9. Eve Avatar

    Mei-Ling, I look forward to hearing from you in any form, because you’ve lost a lot and you are my sister in suffering–even though our suffering is different.

    Shirley, yes, you’re so right… we don’t know what to do or say. I know I didn’t know, and all too often before Olivia’s death was guilty of the same behaviors myself. I know better, now.

    The friend who was the biggest support to us during our loss was one who had lost her own father the year before after a lengthy illness. This is the only way she knew what to do. I remember being afraid of going around those who were recently bereaved. Now, of course, I’m not. As the Bible teaches, “weep with those who weep; rejoice with those who rejoice.” It’s all in there, somewhere; I think I had just been too blind to see it.

  10. deb Avatar

    A blur, not a blue, sorry.

  11. deb Avatar

    My daughter didn’t die but my dream child died when the doctor told me Katie was handicapped. I remember everything was a blue for a long time. Everything hurt, I felt everyone’s pain, it was like I had no skin, no barrier between me and the rest of the world. This went on for a long time but about two or three months after Katie was diagnosed I went back to see my daughter and she told me I was depressed because I had been grieving for longer than two weeks.

    Who came up with two weeks? It took me years to stop wishing for something different, to stop crying, although I’m crying as I write this. It took a long time and through it all I had a real live daughter who needed to be cared for, thankfully. I think she kept me alive for years. Without her I might just have laid down and never gotten up again. It hurt that much.

    When Katie was around a year old, maybe a bit older, we were involved in a group at the hospital. It was a group of parents and their disabled children. One of the children died about two thirds through our time there and I remember thinking, how come those parents are so lucky? Their child died and mine’s still alive.

    I’m thankful now for Katie but it took a long time to see her as a gift and not a burden. I don’t think I’ve said much about you and what happened to you and Olivia but when I read your story, all of this started coming back up. I’m sorry for your loss and all your grief and thank you for letting me tell you my story here. Take care.

  12. Shirley Avatar

    Eve, unfortunately it is not uncommon for friends and even family to avoid one who has suffered such loss. Often a reason is offered: we didn’t know what to say nor how to act, and thus the hurting family is denied the mere presence or hand-holding of dear ones.

    What a shame. Perhaps your post will give us all greater courage to be near those who are suffering.

    Thank you.

  13. Mei-Ling Avatar

    It seems strange to be thanking you for sharing what is obviously an extremely painful experience. I don’t think words can convey what I actually want to say.

    I’m not sure how to express this without turning it into a post “about myself”, and I don’t want you to get that impression. And of course, I don’t want to ramble on.

    So what I will do is… I will thank you for sharing this, for giving me (us) a glimpse of what it’s like – despite the pain and grief. I know a “Thank you” may seem awfully meagre, but it’s better than staying silent and letting you think I haven’t read your blog posts lately.

    And I will send you an e-mail later today because there’s something else I think you should know, and your post about Olivia has really made me reflect on what loss is about.

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