Our Life With Caleb

First published in 1976, Our Life With Caleb records the life and subsequent death of Jared and Alice’s first child, born with a respiratory disease. In separate accounts, they share their experiences of 5 1/2 months in the Neonatal Intensive Care Unit with their son by inviting the reader into the despair, hope, fear, and joy of parenting a child with special health care needs. Jared and Alice have republished Our Life With Caleb to include a postscript written by Caleb’s younger sister, Adrienne.

The story of Caleb appeals to the indestructible resiliency of the human spirit even in the face of tragedy and the possibilities of transforming suffering into grace. The honesty of feelings and philosophical musings found in Our Life With Caleb is a haunting document of the brief life and loss of the child. In this unassuming little book the reader is lifted out of the ordinary and offered an intense experience of the daily, even hourly, journey of living consciously with a sick child.

Our Life With Caleb is an appropriate gift for those families who have faced or are facing a similar loss. It is also an inspiration for parents raising children with special health care needs and the professionals who serve these families.

Excerpt from Jared’s Section

Alice and I were alone that evening. We had just left the nursery again -- what seemed like again, and again, and again. We waited all day. No change. Wait. Just wait. Taking the most inconspicuous seats in the Waiting Room, we sat again, talking, thinking, waiting. Sitting and waiting in the Waiting Room. No catharsis. Waiting. How long? Why? Will it ever break? How can Caleb keep on fighting so hard? Wait.

At 9:30 we parted. Alice went to her hospital room; I journeyed home to our apartment.

Night was lonely. Empty room, signs of pre-delivery bedroom clutter, phone haunted me. Lively, crying, healthy babies ever present for Alice. Caleb's absence; Caleb's presence. Squeezed. There, yet not there.

I arrived at the hospital early. Alice had already been in to see Caleb. No change. That was a good sign. Every day he lived was another day for his lungs to improve. Every day, he lived was another day for him to get stronger. Wait. Wait. Every day that he lived was a day that he didn't die.

More flowers. More phone calls. Maribeth traveled in from New York City to be with us. "I just had to come. I just want you to know how much I am with you all." A web of support and love expanded to include more and more people. It stretched out from Syracuse to Washington DC, Florida, New Orleans, Michigan, North Carolina, Colorado, Chicago. Included close friends, family, casual acquaintances, unfamiliar faces. "Were thinking of you -- all three of you." We knew they were. So did Caleb.

Yet communal support didn't remove the uniqueness of the events being played out in front of us. Why was this happening? Is this really a question of justice? Are we strong enough? Break. Damn it, break. Will there ever be a break? Constant waiting on the edge. No matter where we start, we return to the one haunting question: Is it possible to live fully, accepting life now, when the dimensions of life seems so unfair, unjust, tragic? Can we get beyond the question of justice and injustice to live with death, to live with Caleb now?

For brief moment we could.

"Our experience with Caleb is no different from any one else's experience with another person. We are facing death -- life and death. We are confronting the separation of parent from child -- distance of person from person. Individual relating to individual. Death. That's timeless. Our experience is different, not unique."

Excerpt from Alice’s Section

In autumn leaves fell from Caleb's tree. They covered the dying wild strawberry vines beneath it, and sprinkled the mountainside with color. The children collected them, wrapped them carefully in tissue paper, and sent them to us. We missed being on the mountain.

In the springtime, we held our breath, waiting for the [the tree we planted over Caleb’s grave] to burst into life again. It did. We wondered if anything else would ever seems so important to us again as Caleb's life and death, ritualized each spring by the tree's rebirth. I wondered how I could ever feel again with the same intensity I had felt for Caleb. I wasn't sure I wanted to. I knew that no other person could ever fill Caleb's absence, that I would never "get over" his loss. But the rituals of burial were over; the days filled by Caleb's life were passed. The present had to be lived somehow with the truth of Caleb's death

To live with the truth of Caleb's death means dealing with it concretely, reminding myself that this is the way it is now; it means feeling death with words, looking at it face on, until the realization becomes part of the gut. Yet even in death Caleb remains my son; I remain his mother. And it is both his life and his death, which continues to influence me. That truth takes shape no longer in my interaction with Caleb, but in speaking of his name and of his memory. I have to find a place for his memory in the present, because Caleb's life goes on in the way that memory affects who I am. The legacy of memories provides the transition to acceptance of the totality of our separation by death.

So I cannot remain silent about Caleb to spare others the embarrassment of hearing of my love and my grief. Who I became in the context of my life with Caleb is unique -- the relationship created its own life, altered me, and can never, therefore, be duplicated with another person. Before I can move into a new life without Caleb's presence, I have to integrate the significance of that relationship, and that means re-examining who I have become through the events I shared with him.