Annual letter written to family and friends January 1, 2009:

I, Jason, am sitting here in front of the woodstove in our living room while outside the bitter air methodically extracts the heat from every object with which it comes into contact, and I’m thankful I am now on this side of the wall. I am attempting to write a letter to you which will give you a taste of the way our family experienced the year 2008. I feel as if I’ve bitten off a little more than I can chew.

What dominates our memories for 2008 is the life and death of our daughter/sister Nora Lynne. She lived a short, challenging, beautiful life in a mysterious body, and leaves us all wondering at the ways she affected us, and wondering what our brief encounter with her can tell us about meaning, mystery, loss, and love; about our places in the universe, about our places in our families and communities. On June 4--seven months after her arrival--she had to let go of life, and now seven more months have almost elapsed. I find it hard to accept that we have nearly lived as long without her as we did with her. I utterly fail to fully comprehend the experience. Indeed, one of the things I learned from the experience is that full comprehension is unattainable, whereas exercising presence in the flowing moment brings my intellect (limitations notwithstanding) to bear on the situation, while allowing me to live peacefully with the circumstances as they unfold.

We are grateful for the tremendous feeling of support we were able to carry with us through the whole journey. What can we say but that we wish every family encountering the kind of challenge we have faced could have access to such personal and practical resources as we have had through our family, neighborhood, workplace, medical, and spiritual communities.

Seven months have gone by quickly, but not because there was nothing going on. It was startling for us to notice how rapidly the pace of activities seemed to want to return to “normal” after Nora’s death. In a sense, this was part of our healing. It doesn’t work most of the time to just sit around and grieve, although there are those moments when that’s exactly what we need to do, and we have not made adequate space for that. What seems to have happened mostly is that we have picked up and carried on with our lives, not knowing if that was actually possible, and sort of grieving, loving, laughing, and growing our way into the next day, each day, until all of a sudden we find that it’s today.

Important throughout our process has been expressing ourselves in writing, for ourselves, each other and for our community. Many of you received our updates along the way.

This autumn Janelle and I participated in a retreat by the Initiative for Pediatric Palliative Care, where we were included as “parent faculty,” sharing our experience with Nora and the health care system with health care providers in a mutual learning situation. It was a solidly good experience, and has whetted our appetite for allowing Nora’s life to have a positive impact on families’ interaction with the health care system. We also were invited to use a sermon time at our congregation (Shalom Mennonite) to share our family’s story, and found that to be a challenging and rewarding process. Many have encouraged us to continue the writing, and/or to pursue some kind of publishing related to our journey. We remain open to this possibility, but as yet have taken no action towards that end (aside from my having a poem published in the American Journal of Medical Genetics soon to come out…go figure that my first, perhaps only, published work would be a poem in a scientific journal), and are unsure as to if we will, or how we might, proceed.

To mention specific ways in which we’ve been spending our time, I’ll start with myself. I keep busy with a combination of non-monetary activities (six days/week) and some paying work as a general to-do list shortener at Hickory Hill Farm, home of Samuel and Margaret Johnson, whose property lies adjacent to ours. Non-monetary activities have included the continued construction and development of our home and homestead, (which has recently included my first foray into table making), combing thrift stores for admittedly non-essential durable goods, full-duty daytime parenting (and light housekeeping) two days per week, shared-duty daytime, evening, and nighttime parenting most of the rest of the time, volunteering at Kali’s school ½ day/week, visiting with friends, neighbors, and family, some gardening (paltry this year due to circumstances), and reading late at night when everyone else is asleep:

William Golding’s Lord of the Flies (re-read)
Chinua Achebe’s Things Fall Apart (re-read)
Toni Morrison’s Paradise (re-read)
William Stafford’s Even in Quiet Places (poetry)
Back issues of The Door Magazine.
*Roberta Gilbert’s Extraordinary Relationships (on family systems theory)
*Donald J Meyer’s Uncommon Fathers: Reflections on Raising a Child with a Disability
Richard Louv’s Last Child in the Woods: Saving our Children from Nature-Deficit Disorder
Richard Deats’ How to Keep Laughing (Even When You’ve Considered All the Facts)

On the Docket (I am always on the lookout for a new read, especially good novels, funny stuff, smart stuff, essays, and poetry. Suggestions are welcome!):

Ted Kooser’s Delights and Shadows (poetry)
Lewis Turco’s The Book of Forms (poetry writing handbook)
David James Duncan’s The Brothers K (to re-read)
Leo Tolstoy’s Anna Karenina (to re-read)

*The only books Janelle managed to read, and even those were a challenge to find time for AND stay awake through.

Janelle continues to find employment and meaning at the Center for Justice and Peacebuilding at EMU, where she is Academic Program Coordinator for the Graduate Program in Conflict Transformation. Her gifts are well appreciated there. We have both felt privileged to participate in the CJP community, which has shown their caring in helpful and touching ways this year, and which has helped us to place our family’s experiences in a broad context of the global community of which we are a part.

Janelle loves her days at home, claiming to feel fresh excitement each time she drives up our driveway. She continues to find joy in baking bread, preserving fruits and vegetables, meal preparation, etc., so the kitchen is her fortress. But she also loves to emerge from the fortress for long walks around the property and on the local roads. The challenges to which she is rising include balancing work and home, living the perspectives Nora’s life introduced to her while continuing to grieve her absence, improving family and other relationships, and parenting a really lively five-year-old.

Precious Kali is having a great time growing up, and her parents are loving it, too! Like her parents, she is proving to be a somewhat intense person, which has its merits and demerits (we should know). She has not, however, inherited from either of us our strong aversions to disapproval! While challenging at times, this probably bodes well for her in adulthood. She is turning out to have her mother’s natural, almost spooky number-processing capabilities, sometimes wanting to play “math class,” now involving simple algebra (!), before breakfast. She also loves story books, and is getting interested in the longer, chapter types. She’s starting to learn to read…far more than she will let on to her parents when they ask! Maybe she thinks that if we know her real reading skill level, we’ll stop reading to her. At Shenandoah Valley Community School/SVCS, which Kali attends 2 ½ days per week, “reading class” is voluntary (so is everything else). Kali expressed interest and has been taking part. We’re very pleased with the SVCS approach, having noticed many instances in my volunteer time there that contrast in positive ways with the conventional educational system. We’re always eager to talk about the school with anyone who’s curious (and more information can be found online at http://www.svcs.us/). We both have noticed how comfortable and welcome Kali seems to feel there.

Kali’s other interests include her gentle pet rabbit, Curious Hiddley, dressing her dolls and stuffed animals (most often in Nora’s clothing), dressing and undressing herself, imaginative play, dancing and other performance, asking questions, teasing, telling jokes, birds, babies, relatives, neighbors, the color purple, PBSKIDS.org, trash walks (picking up trash/recycling along our road), the idea of goats, and being involved with household activities.

As a family of three since Nora’s death in June, we have: vacationed in Cape Charles, hauled rocks for our new parking space, walked the roads together, planted garlic on my birthday, visited Hershey Chocolate World, and most recently commenced semi-regular family meetings.

In the coming year we will expand our homestead to once again include chickens. Janelle and I will celebrate our 10^th anniversary in May. We hope to expand our garden both in size and variety of plants. In general we intend to put significant energy into continuing to put roots down here at home, while staying connected and involved in our ever expanding community. We will continue to add to the memorial garden we have begun for Nora in front of our home, missing her as we do, and at the same time will be ever weaving the lessons her life presented to us into our daily lives.

Blessings, Jason (with input and editing by Janelle)