Laryn:
Thank you for being present with us today. We don't pretend to have a lot of answers and our processing of these recent events in our lives is far from complete. We expect that we will be dealing with anger and grief for some time to come. Even so, we wanted to honor Caritas and share some of the things that we've been meditating on recently as well as some of the things that Caritas showed us in our brief time with her.

Our journey to this place began two long months ago on the morning of August 18th when we were told that the life of our tiny daughter was gravely threatened. Since the initial and subsequent diagnoses, we have become familiar with pain, confusion, doubt and uncertainty. Our community of family and friends and even complete strangers have risen up to care for us, hurt with us, and pray alongside us. At times, it felt as though all of our prayers were falling on deaf ears. The disconcerting fact is that those who seek God's healing are not always physically healed. We pressed on with varying degrees of faith that God can and does work wonders in our world and in our time, well aware that it was next to impossible to distinguish between faith and the stage of grief known as denial. Our hope that God would intervene as Cara's health and life were under attack wavered regularly and was often non-existent as we tried to keep our spirits up without clinging to a false optimism. Of the three that remain, for us only love was a constant, although it often took the form of heartbreak.

We found that everything around us was reinterpreted through a new lens. We knew that even if, by miracle of miracles, Cara was healed or blessed to live and function in our lives, we would still be profoundly changed people because of our journey into the valley of the shadow of death. Words and phrases from the Biblical narrative took on new dimensions. We trudged alongside Abraham on his long journey toward Moriah, and cried out with Hagar in the desert: "We cannot watch our child die!" We mourned with Martha, saying "Lord, if you had been here, our daughter would not have died." As we continued on our journey, we began to detect a common observation in our meditations: when we suffer, God suffers. It was and is tempting to blame God for this situation for all the usual reasons. But these continual reminders of God's intimate involvement in our pain seemed eventually to change the focus. A friend sent a note early on, reminding us that we "are in God's heart, which is not always a safe place...filled with promises of shared suffering and joy." It meant infinitely more to read through our own tears that Jesus wept, himself a man of suffering, familiar with infirmity. The night Cara died, Janel had a spell of uncontrollable shaking, cold flashes and sobbing while I sat on the hospital bed beside her with my own tears and helplessness. Afterward, she commented that a window had been opened in her image of God responding to the death of Jesus; I visualized the earth shaking and darkness descending as the veil of the temple was torn. It became clearer from this perspective that God is not "out there" choreographing disaster or sacrificing pawns in a cosmic chess game that is going perfectly according to plan. God is "in here" absorbing pain, suffering with us, embracing brokenness to heal it and disarm it, working to create that world where God's will is done on earth as it is in heaven. Jurgen Moltmann says that "God not only participates in our suffering, but also makes our suffering into his own and takes death into his life." I have experienced more deeply than ever before the groaning of all creation, yearning for redemption and healing and renewal, and at the same time caught a glimpse of a suffering God, groaning with us in ways that words cannot express.

Janel:
When I went to the hospital a week ago because of signs of early labor, our pastor, Del Glick, joined us for prayer and reflection during what we thought would be a brief stay at the hospital for hormone injections to strengthen Cara's lungs and magnesium treatment to stop contractions. Del asked us, "Where is God in all of this?" I replied that besides my sense that God was present to us through the support of family and friends, I often felt that we had been abandoned by God in the wilderness. Our situation seemed to become more and more bewildering as Cara's prognosis worsened and my pregnancy became more complicated. We didn't know whether we should seek aggressive treatment or let nature take its course. We had no idea how to plan for the future or even envision it. Would we be spending the rest of our lives in and out of hospitals, caring for a severely disabled child? Or would we return from the hospital with empty hands and empty hearts? When the obstetrician came in to prepare us for a month of bed rest, we joked with Del that we needed a word from the Lord. Should we continue down this path of invasive medical intervention despite Cara's extremely poor prognosis? Should we listen to the voices shouting, "Choose life, no matter what!" or the ones whispering, "sometimes love means letting go"?

After Del left that night and I went into active labor, several phrases flooded my mind in between contractions and delirium which, to my surprise, really did seem to be words from the Lord, words that colored our experience over the next few days. I found myself pondering Julian of Norwich's phrase, "all will be well, all will be well, and all manner of things will be well," and I knew that no matter what happened, we would all ultimately be okay because in the end God would make all things well. I also ruminated on a line from Gerard Manley Hopkins, "Christ plays in ten thousand places, Lovely in limbs, and lovely in eyes not his." I prayed that we would play Christ to Cara, but I also sensed that Cara would play Christ to us.

Laryn:
Throughout the weekend, we found Christ playing in places we wouldn't have expected him. As Janel's body was cut open to remove Cara, I saw blood and water spilling from Christ's side as he gave himself on the cross. When Nanna and Poppa first entered the NICU with stricken faces, or gently cradled Cara in their arms as they later held her, love overflowed from them -- I thought of Christ as he welcomed the little children. As Janel held Cara's broken body in her arms, she looked at the IV marks on Cara's hands and feet and the bruise on her side, seeing Christ's battered body; I looked at both of them and saw the Pieta.

Janel:
We named our daughter Caritas soon after we received the diagnosis of her brain tumor because we loved her and knew that we would need to be reminded continually of the ancient Christian truth that where love exists, God is present. Ubi caritas, Deus ibi est. If our earth was moved and our mountains fell into the sea but we still loved Caritas, then we would know that God continued to be among us whether visible to us or not. During Caritas' short life, however, her name took on new meaning to us. We chose Caritas' name to reflect our desire to love her selflessly. But what we discovered during her birth, life, and death, was that it was God's self-giving love to which her name paid tribute more than anything originating with us. Cara was God's gift to us, a reflection of the unmeasurable and unending love of God. We chose her middle name, Anne, for its meaning, "grace." Shortly before Cara's baptism, pastor Norm Steen mentioned that Anne meant "gift." While we hadn't previously considered this connotation, it struck me that a gift was exactly what she was.

Laryn:
We were thankful that Cara was able to be baptized. The context caused us to see the sacrament in a deeper way, from an alternate perspective. As we celebrated the fact that God had claimed this child as God's own, the water imagery from the liturgy blended with Cara's story. I couldn't help but think of the extra amniotic fluid that had swelled Janel's belly or the extra spinal fluid that was trapped in Cara's head, causing it to grow too large too quickly and causing damage in her brain. I imagined God's Spirit hovering over the chaos of the waters during creation and was comforted to think that God was also hovering over the fluid in Cara's head, preparing for a re-creation. During the liturgy, we heard of the destructive water of the flood and remembered God's promise. In the night of trouble, God led Israel through the sea; surely God would lead us through, as well. The baptismal font was a small ceramic dove that had been a gift when Alleia was born. We had used it at Alleia's baptism, but it had fallen and broken some time after that and sat on a shelf in two pieces. A week or two before Cara's birth we had repaired it without much discussion or forethought -- Janel happened to buy the glue we needed and I happened to see it on the counter and pick it up. The dove's two pieces fit back together perfectly and the seam is barely visible, which seemed to us that day like a metaphor about brokenness being made whole again.

Janel:
Throughout our journey from Cara's diagnosis to her death, wise decision-making was extremely important to me. I prayed for clarity and peace more than anything. I was afraid of prolonging her suffering and I was afraid of not doing everything I could to protect her life out of my own selfishness. As I expressed these fears to Curt Thompson, a family friend, about a week before Cara was born, he reminded me that God's relationship with our daughter is infinitely bigger than ours is with her as her parents. God's love is the ultimate reality in the midst of human striving to be "right." The afternoon before Cara's life support was removed, Curt again encouraged me to remember that God is extremely pleased with us--not because we were doing the right thing, but because we are God's beloved children. As the decision to withdraw Cara's life support became clear to us as that which love would do, I was grateful that God had again showed up in the midst of our pain and uncertainty. And I realized that what we did or did not do in this situation was ultimately of little consequence. Our daughter, broken and bruised, was loved by God. And so are all of us.

In his Love Poems from God, the poet Rumi writes, "If God said, 'Rumi, pay homage to everything that has helped you enter my arms,' there would not be one experience of my life, not one thought, not one feeling, not any act, I would not bow to." Cara's short life and death are still bewildering in many ways. There is no satisfactory explanation for her sickness and suffering. Her death leaves a void. Things are not the way they are supposed to be. Still, our journey with Caritas has helped both her and us to enter the arms of a God who weeps with us, who is at work redeeming the brokenness of our world.