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)

January 1, 2009

The sun is setting on the first day of 2009. Kali is happily whispering to herself in the front room, clothed in her tutu and an apron. Dough for bagels is rising and will soon need our attention to shape and decorate. It's been a good first day of the year and a special end to 2008, spent with close friends Mark, Wendy and 1 year old Isaac. We last spent New Year's Eve with them 5 years ago when Kali was just over 4 months old and Isaac a future dream. I remember falling asleep before midnight with Kali sacked out on my chest.

Kali has been one big ball of anticipation during the holidays this year. New Year's Eve was no exception and she was not about to find herself dozing before toasting in the New Year! In the afternoon she picked out a fancy dress she wanted to wear. When I suggested she might like to wear something more comfortable since we would just be at home, she quickly corrected me that she wanted to be fancy because, after all, we were having a party that evening. She lasted until about 1am when her eyelids could not manage to stay open any longer to read the Christmas stories she was flipping through.

She was very clear with us at midnight that she would not be toasting with wine. Instead her little wine glass had an M & M in it at one point, and a cookie at another. Her toast to the New Year was a hope that we will make macaroni and cheese more often in 2009. She wanted to know mine. Not wanting to plunge to too great a depth of thoughtfulness after her contribution I mentioned three of my hopes for 2009: that we take more family walks together, get chickens and go camping.

Today 2/3 of our family went for a walk. Jason was working for Samuel so Kali and I ventured out. For fun we took our camera along and took pictures of our first walk in 2009. It has the potential to be a fun new tradition. We each took some pictures (you can guess the photographer on each). They are online at http://picasaweb.google.com/bennerj8/NewYearSDay# with a few captions attached.

...We've savored fresh homemade bagels, Kali is once again fully dressed and we have just completed our family meeting for the evening. I shared one more resolution/goal/dream for the New Year. Sometime this year I want to have another weekend with just Kali. I would also like a long weekend with Jason sometime around our 10th anniversary in mid-May and the one year anniversary of Nora's death in early June. Connected to that, or separate, I hope to spend at least one full day in retreat alone to continue processing the events of 2007 and 2008, as well as dreaming into the future.

Christmas in PA

It's so good to be home (even if it was about 55 degrees in the house upon our arrival). As we were leaving Pennsylvania today and I was bouncing in my seat from excitement about going home, Jason commented that I seemed more excited to be going home than I was about our trip. I have to admit that that is probably accurate. Home is a space like no other for me right now.

Pictures of our time away are online at http://picasaweb.google.com/bennerj8
under "ChristmasWithMyersFamily" and "ChristmasWithBennerFamily" for those that are interested in a visual taste of at least some of the activities that accompanied the week past.

Now we have close to a week before work and school start up again to find homes for the many gracious gifts we have been given, connect with friends and neighbors, and hopefully carve out some time for writing and reflection on the year past. The pace of the holidays and the activities surrounding the time with family did not allow for much of either.

I feel grateful for the ways that Nora's life and our memories of the time with her were acknowledged and incorporated into some of the holiday festivities. Somehow it felt right to hear Kali deciding where Nora's stocking would be hung at Grandma and Grandpa Benner's house. This and other rituals are ones that Nora never experienced in person. So in some ways I guess it could seem silly to do it now. Clearly they are performed for the sake of those of us who remain and who miss her. And for me, it somehow brings my journey with her into these physical spaces dear to us (her grandparents' homes), spaces that she never visited.

At the same time, I experienced moments of feeling a lot of disconnect between my "current life" and that which I shared with Nora. Those moments are not all bad, just uncomfortable. I continue to wrestle with things that seemingly contradict one another, but desire to coexist more peacefully side by side. Celebration and loss. Grief and laughter. Stillness and chaos.

Lots of little people

I am not sure the last time Kali and I have had such a low key day. Kali was clearly not herself, laying around pretty much all day and taking a nap before noon! She is sleeping again and upon checking her now her sweaty forehead confirms that her fever has broken, thanks to the acetaminophen which she very reluctantly took.

We have yet to determine for sure if she has yet another virus coursing through her little body or if she happens to be one of the few kids who has an unfortunate and miserable reaction to the chicken pox vaccine that she received yesterday. Regardless, my worry meter starts creeping up pretty quickly when her eyes get droopy, she doesn't want to do anything but sit around and cuddle with me, and her fever tops 103.

It would probably be a good idea to focus on sleeping, not knowing what the night will bring, but this low key day has also involved more sitting around for me. It involved rocking Kali almost through an entire CD and journaling myself to tears while she napped this morning. Both events were much needed.










On the tail end of a week with lots of little people time, I find myself thinking about Nora a lot. I've included a few pictures here of the special visitors which graced our home. I love seeing how each one is developing and learning new things and already showing off their budding and unique personalities. It's fun to watch Kali enjoying them as well, and being a big helper picking out the next diaper needed or getting a doll when useful for some quick comforting.

Last evening we had our semi-regular meal with our Fruit Farm Lane neighbors. The meal was a close reenactment to our Christmas day meal last year; the food that is. I haven't had Kristin's split pea soup since then and it took me back, both of our families adjusting in different ways to the new little lives that had joined us that Fall. Nora's absence was felt last night. Phoebe wore a little sweater that one of my college roommates made for Nora last year. Holding Phoebe was sweet and sad.

Back to today: When Kali fell asleep laying against me on the futon this morning I was trying to get some work done from home in hopes that I can actually take most of our staff holiday days off in the coming week or two. I wasn't expecting her to allow sleep to overtake her (not realizing how "off" she was clearly feeling) and all of a sudden I realized that here I had a golden opportunity to do something that I can't do when I need to be caring for Kali and I was frantically trying to get work done. It didn't help that my network connection was horrible and so each task was taking three times as long as normal. I felt that familiar rise of anxiety in me.

I logged off and grabbed my journal, that hadn't been cracked for almost 2 months now. I rambled through various topics and sources of tension before circling around to this unpredictable grief journey I find myself on. When life gets busy, that part of my life seems to be the quickest to get pushed aside or put off for a more convenient time. I can quickly find myself spiraling emotionally about all sorts of things. The quiet today had to seep into me. I was pretty loud in it initially and wondered if I'd ever find a way to quiet myself. Five pages or so into writing I found myself addressing Nora.

"Nora. Nora. Nora. You continue to be a mystery to me. You were nurtured in my womb. You were my daughter, our daughter, Kali's sister. You came and you went. You disrupted, you exposed, you purified, you baffled, you amazed us. Sometimes I'm so grateful for the quiet of my house - absent of oxygen machines that kept you breathing. But the quite makes me crazy too because in that quiet your absence is so real and then I miss you. When Kali is buzzing around full of energy and my "to do" list grows as the activities and commitments build, I feel like my grief and my memories of you are crowded out and pushed aside. I feel cold. I wonder if I'll ever cry again. I long for tears that will make me feel alive and remind me that you are not. It seems that when the quiet comes so do the tears, reminding me that it hasn't been long since we loved you, touched you, cared for you. And then I'm grateful and some of the anxiety lifts and I feel lighter again."

Kali woke up then and so the writing ceased but the remainder of the day I felt like I traveled back and forth between this season in life and the previous ones. I held Kali close, but wondered when, if ever, I'd get good at holding on to my loved ones firmly and passionately yet loosely. I remember when Kali was a toddler and we got our first chicks, it was nearly impossible to explain to her how she needed to hold onto the chick so that it was secure and would not get out of her hands but to not squeeze it. Somehow we learn to do that with things we can see and touch. I find it a whole lot harder to do on an intangible level. I'm practicing...

Getting braver!

*Just proof that I'm keeping my commitment! It's been eight weeks so time to get my courage up again and give blood! I didn't realize how popular I would be with O+ blood but I got 2 postcards and about 4 phone calls this past week about blood drives, including the one at Home Depot today. Honestly the most unpleasant part of it was getting there through all the holiday traffic. I was so glad to not be out shopping. They would not let Kali on the "blood bus" so we had to go one at a time. Kali was thrilled, though, to get about 45 minutes with each of us in Barnes and Nobles to read kids' books.

This feels like such a small way to give back in honor and memory of Nora's life but for me a powerful one. There were times during Nora's life that I discovered strength in myself that I don't often tap into. I want to continue to remember that I can in fact do things that I am often quick to say I can't. I even got a little less woozy this time and I was also told I get the record for the fastest flowing blood!!

Completely unrelated but I wanted to add a picture of Kali enjoying Jason and her recent Gift and Thrift find - a desk! It's so cute to hear her say "I'm going to go work at my desk." Today she was doing some cooking and after awhile came proudly to me saying that I needed to come see something. Her room door was closed and on it was a sign with little pictures and then the words, "RATSTART SF OLE." I did my best to read it but she quickly corrected me. It was to say "Restaurant Staff Only."

*The apron was the "thank you" for donating blood. Jason successfully turned down a second one. Anyone need a Paula Deen apron??

Seasons

There are new pictures of some of our favorite little people online at:
http://picasaweb.google.com/bennerj8/Phoebe# and
http://picasaweb.google.com/bennerj8/TripletsTheirHomeOnThe7th#
A lot of words could be added to them, but it mostly feels unnecessary. I think it goes without saying that we soak up their presence in our lives. We celebrate their vibrancy and health, enjoy each new thing they discover about the world and themselves, and feel thankful for the time we are able to enjoy with them. I can't help but feel indebted to Nora, in so many ways, for these precious relationships.

This afternoon I attended a surprise baby shower for a CJP student who is expecting a baby girl in March. It was at "You Made It Pottery" and so we were painting/glazing all sorts of things for the baby, nursery and parents. A fun, creative, celebratory time. I was happy to be there and be part. As often happens there were many reminders for me of Nora's time with us and her premature passing.

One of the things being decorated was a ceramic tissue box cover. It struck me that the person working it chose to do a theme of seasons. She chose to make each side represent one of the four seasons: Spring, Summer, Fall, Winter. I came home, drawn once again to our beautiful stain glass piece representing the three seasons Nora spent with us. That tissue box for me is a symbol of hope for the new little one's life; that she will experience all the seasons that we enjoy in this part of the world. That she will enjoy and join in the natural rhythm of life.

On a different note, life has yet to fall into a very natural rhythm for me. I often sense that I'm still very much finding my way in a world that feels much changed to me. I'm adjusting to the changes I sense in myself and learning what it means to journey authentically here and now.
Nothing like the Christmas season to exacerbate those challenges. The busyness of this time of year seems so counter to what I intuitively want to be doing right now. I crave time to wait, wonder, and reflect. It seems that Advent should have at least a good dose of that.

Kali has the anticipation part covered, as she checks in frequently on how many days until Winter and how many days until Christmas. And while I fret about gift giving, desperately wanting to creatively and thoughtfully sidestep the impulse to buy more and more stuff while wanting to find ways to show many that I care about and am grateful for them, Kali enthusiastically helps wrap homemade presents and some of her own things picked out for cousins and friends. As always there is much I can learn from her example.

It's sweet to see Kali thinking about many of the people in our life. Right before bedtime this evening she was in one of her very silly moods where the "knock knock" jokes start flying. This time it was all about using 1/2 a family members name in the first half of the joke and concluding with the remainder. It was so sweet to hear her going through all of them. This morning she wanted to know how many people were in our family. She clarified that she meant us, as well as aunt, uncles, cousins, grandparents and great-grandparents. On that one I asked if I was to include all or just the great-grandparents that are still living and she wanted those that were still living. I counted and in this case chose, because of her former criteria, to not include Nora in the numbers. Much later in the day we were on our way out for a walk and as we walked down the driveway Kali told me that I had forgotten to include Nora in the numbers of our family. Somehow those moments where she acknowledges and names the unique place that Nora holds in our family's life feels so right and healthy and is healing for me, and hopefully her. It opens a space, initiated by her, to talk on her terms.

We started something new as a family this week, after a few rocky days together in which it just felt like we weren't in a very good groove at all: Family meetings! It's not only been really helpful, but it's been fun, informative, productive, and the "meeting minutes" are going to be very entertaining for Kali in about 15 years from now! We can all contribute to the agenda and all participate in the discussion and decision-making. Kali clearly feels empowered in this type of process (probably partly from being used to the school meetings they have each day). She has lots of ideas, but what is interesting to me is how she also seems very open to hearing our ideas and working together to come to an agreement. We've only had three meetings thus far but I'm a huge fan already! They are totally worth the time they take, even if only on entertainment value.

Has it really been 6 months?

The house feels a little strange without Jason's presence in it! He left around 4:30 this morning to take my Aunt to the airport, spend some time in DC with his sister, and then head to Harman, WV. He will be in WV helping my Uncle with the home they are building until Sunday morning when he returns home. Kali and I are having our first weekend at home together just the two of us since Kali was born. Last night as I could visibly watch Kali fade - bleary eyes and warm to the touch - I wondered what kind of weekend we were going to "enjoy" together.

She was still fevered this morning and since we have both been enduring a cough that has lasted weeks now, I broke down and took a sick day, skipped my afternoon CJP class and made a doctor's appointment. We both are now started a round of antibiotics, which I try to avoid whenever possible. But I would like to no longer sound like a seal when I cough and I don't want Kali's to linger too much longer unnecessarily. He felt quite convinced that if we didn't have persistent allergies, we probably both had an infection that would only clear up with antibiotics.

It hasn't slowed Kali up much and we are very much enjoying each other's company. We were just working on finishing up some Christmas craft projects and while we were doing that we crafted a list of all the things we wish to do together. Looks like a fun mix of productive activities and imaginary play.

One of the things I chose for the list was to do some writing on our blog and Kali wanted some computer time. So she is navigating her way around pbskids.org while I write down some reflections.

Monday of this week, the three of us went to a small service held at RMH each year for bereaved parents (and there were a few other children there besides Kali). Looking back on it now several days later I feel very glad that we went. The service itself wasn't as meaningful to me as the UVA one was, but it was very good to gather with others to remember and celebrate. The focus of the reflection from the nurse that shared was very much on how to survive the holidays. Each family was encouraged to bring a Christmas tree ornament to hang on a tree in honor of our loved one. They include ornaments from the past 20 plus years that they have held the service. Kali was excited to help hang dozens of ornaments besides the little apple she chose to hang for Nora.

As we were leaving Kali surprised me with another one of those comments that sets me back on my heals. She said, "If my next little brother or sister is healthy, can they be born here like I was." What to say???

Today marks 6 months since Nora died. It's hard for me to believe that in a month from now we will have lived as long since Nora's death as her life was with us. I received an idea yesterday from a caringbridge website that I am hoping that Jason, Kali and I will do together some time over this holiday season. One of our Summer Peacebuilding Institute faculty members has a wife who is in a care facility with Alzheimer's. I don't check often but I looked yesterday and he had written a recent reflection about the movie, “Because of Winn-Dixie,” and the idea he gleaned from that.

Here is his brief summary of the movie:

"The star of the movie is the only child of a preacher. Opel is a lonely little girl, whose Mom left them when Opel was only three. Her Dad would never talk about the missing Mom. Opel rescued a loveable dog in the local grocery store and named him for the store, Winn-Dixie. Opel and Winn-Dixie find love and companionship with one another and through their expanding circle of relationships bring joy and healing to others. When Opel turned ten years of age, she pleaded with her Dad to tell her 10 things about her Mom that could be the heart of her memory of a mother she did not know. This began to fill in the void in Opel’s heart. Later, Winn-Dixie fled in fear during a thunder storm (just like our family dog Lady would do in Nairobi when we lived there in the 90’s) and Opel was afraid she would lose him forever. So she created a top ten list of what she appreciated about Winn-Dixie. She thought this would help her hold on to her memories in case she had to release him forever."

I have been really drawn to this simple idea of a way to pull together the things that I most value and remember and cherish about our daughter, Nora. This is only the start of my list, but I'll share three of the things that come to mind immediately:

1. Determination: Nora didn't give up easily. I will always remember her working so hard, all 6.5 pounds of her, to roll over. Clearly sometimes she succeeded at whatever task she was trying to accomplish and sometimes she did not. But she cannot be faulted for not trying. Same with the little board books we had that Kali was also fascinated with. There were the smallest ones we had, but still pretty large for Nora's little hands. She wanted to hold them and hold them all by herself!

2. Curiosity: Until the very end, Nora's showed an intense desire to learn and experience the world around her. Whether it was figuring out every millimeter of her binky, discovering that we had not one but two ceiling fans in the front room, or watching every nurse and doctor that came to her bedside to check on her (or mess with her), she was present to her environment.

3. Engaging: I can't think of one word that really captures this one well but this youtube video does: http://www.youtube.com/watch?v=Ii2dvShwo5c I love how expressive, communicative, adorable, and relational she is there. For as long as her body would let her, I feel that she fully engaged the world around her and those of us that cared for her and loved her to the best of her ability.

One of the things that continues to strike me about Nora's life - something that feels sad and powerful and daunting all at one - is that in many ways Jason and I have the opportunity, privilege and responsibility to help shape others' images and memories of Nora. One of the difficult things for us is how many of our friends, family and community members never got to meet Nora in person or spend much time with her. She is remembered by many only with the words that Jason and I have spoken and written about her. I hope that our words can honor her, even as we continue on our journey of grief and of finding meaning in the difficulties of the path we traveled together with her.

We'd love to have others add to our list or create their own (or make a list of your own for someone you love). We are also thinking about doing a "top ten" list for Kali as a gift to her. One of the things I've been thinking about lately is how we can do a better job at honoring and treasuring each other while we are still physically present to one another. That being said, I should get away from this screen and enjoy some fresh oatmeal bread with Kali!!