Nora's second birthday

We are not reopening this blog site to future posts (still putting any new reflections at: www.myers-benner.blogspot.com) but recently felt like it would be nice to put a link on the last post to the posting where we shared a summary of our journey with Nora. For those just landing on this site, it may feel cumbersome to navigate around. Going to http://myersbenner.blogspot.com/2008/11/paradoxes-of-letting-go.html, a posting from about this time last year, is a good spot to start.

Today seemed like the right day to put just a few pictures up on this site again. Today is Nora's second birthday. Is it okay to say that overall it has been a "good" day? Full of emotion, but also full of hope and some celebrating and looking to the future as well as remembering the past and especially Nora's life.

I, Janelle, dealt with some intense feelings of disappointment yesterday to realize that a lingering cold was not going to go away fully in time for us to donate blood in Nora's memory this morning. Instead the time was spent with Jason, my dad and I going for a hike to the lake near our home. It was refreshing to walk in the cool air and mist. I realized that I had no idea what the weather was like on the day of Nora's birth.

While we were out my Mom and Kali were busy decorating the cake Mom had made (with some instructions from big sister, Kali, as to what cake was appropriate for the occasion). We were not allowed to watch or look at it before eating it, but Kali assured me it would include some orange for Nora. It was beautiful and probably one of the best activities Kali could engage in at her level today. It was a treasured moment later in the day for me when I heard her plinking out "happy birthday" on her keyboard. I asked her afterwards if she was playing "happy birthday" for Nora. She replied that it was for her but then admitted that she had not thought of that before I mentioned it - as if to admit that it would have been nice had that been her intention... Either way, I savored the song! I wasn't quite up for singing it myself, but it felt appropriate hearing Kali spontaneously, and with great focus, hit each note.

The gestures from friends and family were felt, some deeply. Most notably, was a poster of pictures and poems from my dad that helped bring on a morning surge of tears! I have so few pictures printed and longed for something to be able to feast my eyes upon (not on a computer screen). The collage of memories filled a void that I was feeling!

This evening Kali, Jason and I planted four dwarf laurel bushes given to us by a friend. Something about planting and tending something living felt like the right activity for today. Then as we watered them in, I suggested walking to Nora's memory garden. Kali quickly added that those plants needed water too, as the last time she and Jason took care of the chickens she thought they "looked sad." Most of the plants are entering "winter mode" but there were a few lingering splashes of color.

We will end the day by enjoying a fresh pie, made for us on this day by a friend and delivered by another friend. We are grateful for all those that remember Nora's life with us today and many days. Her life continues to shape ours in so many ways and for that we are grateful. As the moon peaked out of the clouds at us and as we went around gathering eggs and "going on a little explore" with Kali as our guide, she started singing, "I see the moon and the moon sees me..." She wanted me to continue and, as I sang the words "the moon sees somebody I'd like to see," it rang so true!

Final posting!

While our journey with Nora's presence in our lives is by no means complete, we are closing this blog to any future postings. We want this space to be maintained as a place that has focused primarily on our journey with Nora in life and death and in the year following her death. Future reflections can be found on our new blog "Encounters with Sustenance" at www.myers-benner.blogspot.com There is no doubt that our memories of Nora and the impact her life had on ours will also be woven into those pages.

Both Jason and I have been experiencing some variation of "post anniversary blues" or as Jason better articulated, the process of allowing Nora's death to sink in for the long term. I think all three of us felt a certain build up to the first anniversary. Once the activities surrounding June 4 came and went I found myself wondering "what's next?"

Last night the tears, which had been strangely absent the last number of weeks, finally relieved some of the built-up feelings inside. And I realized how scared I felt all over again about losing her - losing the memories, losing the lessons, losing the feeling of being her mommy, losing the sensations of holding her and the sounds she uttered. I no longer find myself feeling upset when people don't mention her. It's more that I want so badly for help in keeping her alive in my mind, heart, body and soul. But I imagine it is a journey I must also go deep inside for, which carries its own set of risks and fears and insecurities. I find myself craving like never before for rituals that remind me of her and also take me close to what her life meant to me.

Who would have ever thought that I would find my emotions plummeting with disappointment when I get a phone call from the American Red Cross (as we are literally in the car on the way to the blood drive) that due to unforeseen circumstances they had to cancel the Home Depot drive today? I had just told Jason last night how eager I was for 30 minutes or so by myself in a chair in that little bus thinking about Nora and our journey together. It spurred me on to make the call to RMH's blood center and Jason and I now have appointments for next Thursday afternoon (I did not even know it existed and am thrilled to have a place right here locally that uses the blood at RMH where Nora was several times and where we can make regular appointments and Kali can be with us). So I get one week off my "every 8 weeks goal" but also had a few extra moments at home this afternoon which is why this entry that has been sitting unfinished for weeks might actually get posted today.

I'll end with some words that my Dad shared with us recently, that were inspired while sitting on the bench by the little serviceberry tree my family planted in West Virginia at "the mountain house" in memory of Nora.

There are places special to us

Where she could not go

But she entered our hearts

and remains there.

Healing rituals

Who can say what the oldest human ritual might be? Certainly not I, but I feel confident that the pattern we and a largish group of our friends and family followed last evening must be among the earliest.

Here is what we did: Having been invited by us, somewhere in the range of 55 people arrived at our home place, divisions of ornamental perennial plants (in pots, bags, and boxes) in hand, and we planted them together, nearly filling the crescent-shaped garden we've established as a way of honoring and remembering Nora tangibly. Then we went to the house and ate with gusto from the cornucopia of scrumptious food our guests had brought. A number of folks were able to stay and sit with us late into the evening, around an open fire in the fire ring in the front yard, and together we recounted some of our "Nora stories" and sang a few songs.

The basic format--the work of planting, sharing our food, singing and telling stories of absent but remembered loved ones--cannot be an uncommon one in the history of humanity, although in ancient times the demands of survival would clearly have increased the immediacy and necessity of the elements of the ritual. I emphasize the commonality between the ancient past and the activities of last evening to illustrate the depth to which the event, which was created to commemorate the first anniversary of Nora's passing (June 4th was the exact date of her death) resonated with me. It was comforting to feel the reiterated support of so many of those whose encouragement and tangible help made such a difference to us during Nora's life. The benefits to us did not end when Nora's life did, however, because over the past year it has repeatedly come to our attention that the work of grief that we have had before us is rendered more manageable by the good fortune we have of remembering--when we remember the time of Nora's life with all its joys and heartaches--a time when we felt the caring support of our community. Many who pass through such agonizing circumstances do so with the added burdens of disappointment with their community and an acute loneliness.

My spirits were high this evening as I arranged a mulch layer of grass clippings around the new plants. To those who helped create this memorial oasis I wish to express the thanks I fear I failed to make known in the moments the plants changed hands; my mind was rather full at the time: please pardon me. The garden is beautiful, and will only grow more so with the passage of time (this is my fondest wish for the presence of Nora in my life). At one point this evening I stood back to look at the garden, and, experiencing a wave of pleasure, caught myself thinking, 'Well, what do you think, Nora?' It is the first time I have addressed her directly, even in my mind, since her death. Before that moment I had not been aware of having not addressed her, nor felt a need to. But it is striking to me that it felt so natural in that space. I feel hopeful that the Memory Garden will be a place where I can go to be with her. I also feel thankful to those who contributed financially to the garden bench and water feature we plan to place in the garden. I am eager to sit on the bench and watch the children and birds as they are drawn to the sounds and sight of moving water.

My good mood was not just from the aforementioned event. Spring is springing in grand form around here, which is just what this family needs. It was either the late evening of June 4 or the early morning of June 5 that the brood of Carolina Wrens that's been incubating in Kali's bicycle helmet on our front porch made their grand debut. The parents got down to the caterpillar-finding business right away (where and how do they come up with all those bugs?). Also, while weeding the spinach/lamb's quarter bed in preparation for its conversion to bean patch (yes, it's kind of late, but there's still time), I found a nest of baby cottontails in the turf of the garden path. Unfortunately, I found it with my heel, but despite some pitiful (and startling!) squeaking, no harm appears to have been done. Since I don't believe the assertion that touching a baby animal will cause its mother to abandon it on grounds of its smelling funny, I went and called Kali, Janelle, and my sister Emily, who is staying the weekend after the Friday event, and they each enjoyed holding a bunny for a few moments. However, despite the fact that I felt the potential risks were worth it for this one episode of cuddling, I do believe that handling wild animals is generally ill-advised for both parties. This was the only holding we'll do of these little ones, though I'm sure we'll go back for a peek or two.

I suppose there's a basic contradiction with gardeners cooing over the baby wild rabbits being raised in their garden, but my philosophy is generally to make garden preparations with the assumption that whatever creature could be around will be around. This allows us to live more peacefully with the other species that claim this place as home. The spinach and lamb's quarter were grown inside a wire enclosure, and the beans will benefit from the same structure.

Perhaps the above paragraph about garden philosophy and practice provides a reasonable context for giving notice that we are planning to redirect our web log energies towards a modest production (the same format as this blog, most likely) that explicitly expands its focus to accommodate reflections on a broader range of activities and topics, with a general emphasis on our family's attempts to live a joyful and responsible life in this place. We will leave the "Cascades of Light" blog available for perusal, but do not plan to spend time updating it. Writings about the experience of Nora's presence in our lives will be integrated into the broader perspective (this reflects the integration we seek and need).

Thank you for your interest in our family's story, especially as it relates to Nora's brief life. We can only hope that, in reading what is found here, you've gotten at least a taste of what it means to know our dear baby daughter and sister.

More pictures can be seen at http://picasaweb.google.com/bennerj8/1YearGathering#

One year ago...

A day of much remembering. A week of remembering. A spring of remembering. We have been so grateful for some moments set aside to be more present to our memories and our grieving. We spent several days in WV this past weekend with family and for Jason and I to celebrate our 10th wedding anniversary. We visited Blackwater Falls twice and Jason and I spent two nights at Douglas Falls B&B (which is right near a river and several waterfalls). We also were able to enjoy the little tree my family planted on the knoll above the swing set at the Mountain House in WV.

Together as a family we spent time last evening listening to a tape recording we made of Nora (like we had created with Kali as a baby) that we had never listened to together. Hearing her almost laugh with Jason brought back memories of the best of times we savored together. It is good and sad to hear her voice.

Today was another day with time set apart, and once again near water. Jason and I spent the time during Kali's school day in a pavilion at Riven Rock Park along the Dry River. The sound of the rain and the water was soothing.

Among the hardest things on our minds were the memories and awareness of the impact of Nora's life and death on Kali. She has seemed very tender the last few days, and for a 5 year old this also means more prone to emotional "meltdowns" (prolonged outbursts). Last night while listening to the tape we were talking about missing Nora. She initially said she did not miss Nora, but then rephrased it to say that she does miss Nora but she doesn't think she misses her as much as I seem to.

Jason and I reflected today on wondering whether we will ever regret not having Kali with us at the time of Nora's death and right after. She did not know when she last held Nora that it was the last time she would hold her. That was hard for us to think about then and even now. Though we can't quite imagine navigating through that night and morning with our own emotions and all the decisions to be made with another little one whose needs are equally important and whose understanding of all that was unfolding would require our full presence with her. So we did our best with finding ourselves in a place we didn't wish to be and knowing Kali was in loving hands.

The rain is still coming down now and looks like it will until about the time we gather with some family and friends tomorrow evening. Several have reminded me that this weather seems fitting for a time of remembering Nora, who left us amidst rain and lightning and thunder.

Coming back home from being away today felt good, and so did receiving various phone calls, emails, notes from friends and family also remembering Nora on this day. Words aren't flowing very easily for me in clear sentences today; I'll end with a poem that Nora's Aunt Christie wrote. Christie shared this day with us last year and so was in our thoughts a lot today too as we relived many of those early moments after Nora's death.

The Death Economy

The other day on the radio, a grieving son said, simply,
Death is for the living.
And certainly, Nora’s thunderstorm departure,
a year ago today,
was crowded with rapt spectators.

But what do we do with our gift, death?
How do we spend it?
Display it? Preserve it?
How many times can we tell the death story?

She lived.
I thank the loving universe for that.
She lived straight through every constraint
her fragile body gathered to itself.

Her life was hers; her death, ours.
I cannot spend her life.
No morals pop up, no lessons about living--
I do not have the right to parse her life.

But her dying day, the structured collapse
of my hopes for her future,
the handfuls of sorrow, baskets leftover . . .
I am still sorting through all this,

arranging a rough parataxis, cluttered taxonomy
of her death
and of mine.

M. Christine Benner
6/4/09

Reiterations

Email sent today to all that received updates at any point before Nora was born, during her life or after her death:

If you are receiving this email, you are one of those who wished, at some point along the way, to be kept informed of the progress of our family through the journey of our daughter and sister Nora Lynne’s new life and illness (or you were on our annual letter list or are close family or friends and we didn't give you a choice!). Throughout that seven month period and especially around the time of her death, we were sustained in part by the meaningful expressions of support that many of you offered. It became clear that Nora’s life and spirit affected many who came to know her either in person or through our communications, the knowledge of which has been, in and of itself, one of our greatest comforts. Though we have not consistently remained in touch with all members of this electronically organized community, we suppose that that makes sense and is understandable from both sides of that communication equation.

June 4th marks exactly one year since Nora had to leave us. We are acknowledging this anniversary with various acts of remembrance, some personal and some rather more public: For those who wish to and are able, you are invited to our place in Keezletown on June 5th to gather with ourselves and others for a time of remembering Nora and our moments with her, and perhaps to reiterate some of what she and those moments have meant for us.

We realize that some of you receiving this email find yourselves on the other side of the globe! Please know that we send this mostly wishing to be in touch once more with the net of support that helped sustain us during Nora’s life and in her dying. We don’t expect persons to travel great distances to be with us physically but wished for you to know of this gathering and to know that you can join us in spirit in your own way even at a distance.

Below is a poem that I, Jason, have been developing over the past few days as I have been preparing the ground for planting in the memorial garden we’ve established for Nora.

Reiterations

A father’s love ignores the border
death presents. I worked for you in every way I knew, now
what to do with this: my aimless drive to help, my hoeing the abyss?
There’s nothing you could need from me; I’ll turn my hoe toward earth
and let the rocks and soil absorb my effort, and I'll wait for birth among the
blooming celebrations. I can work on these reiterations.

And so we put together what we can: we scrape
the weeds aside and mark a place where, when it needs to huddle
with the memories, a heart may hide. We’ve caught a hold on changes
in the calendar and seasons, have made spaces full of time: ad hoc
creations. We’ve established these reiterations.

I think it helps a little. Do I need to see reflections of my baby
girl out there exposed to wild, swirling air to keep me from forgetting? Maybe not, but
there is satisfaction in the knowledge that in moments when I need to whittle down
into the quick of loss, or glory in parental, proud elation, I can turn to these reiterations.

Thank you, child! You never read the clock to know the shame
of dallying too long. Your fingers never curled around a cent. When it was time
for you to go, you didn’t worry, you just went. Your heart and mind and palms were full
of room; your presence was a balm for wounds we couldn’t feel. How many repetitions
of your memory will be required for me to heal? What is my hurry? If I sit awhile in a
place, perhaps an insect sipping from a bloom will show the way to freedom from the
hectic expectations. I’ll depend on these reiterations.

I didn’t know I feared a fading of your presence, but I found that when I cleared
the soil space I knew relief, anticipating sprouting seeds. Your memory’s alive, and here
is how I know: I’ve seen it grow! How can this be: while thinking of the years ahead, a
smile? I’m eager to be watching all you were to us becoming what it is, what it will be,
and relishing your place within our family. Our love is strong, so time will find us
living out a leafy incarnation, still repeating these reiterations.

Jason Myers-Benner
May 24, 2009

Don’t let such lofty words mislead you…the Memorial Garden is far from a finished state. It still exists partly in the mind. However, by June 5 we will be ready for and do welcome any perennial divisions from your yard. For those who feel an urge to contribute to the endeavor but for whom distance or other factors preclude your making a gift of a perennial division, you are free to follow your own creative inclination (communication is always a welcome contribution) and there is also a monetary option: we are planning to place a stone bench and solar-powered fountain in her garden, and welcome contributions towards those purchases. We mention this possibility only for those who genuinely feel they wish to participate in this way. The placement of the bench and fountain do not depend on your financial participation.

Thank you all for your support all along this way!

Remembering

Last night at our family meeting I put on the agenda to talk about ways we together as a family want to spend time together remembering and sharing about our time with Nora over the next number of weeks. It feels sometimes like the busyness created by the list of tasks to be done (even if many of them are to prepare for the event June 5th to commemorate her life and death), keeps us from being as intentional at creating spaces to be together with our memories. Kali wants to look at the few video clips we have, Jason is most interested in looking at pictures, and I'm eager to listen to the remainder of the one tape recording we have of the time she was with us and her little noises. Hopefully we'll do all of those things together. Kali's other idea that she initiated was for us to go and look for a baby outfit to buy for her dolls - not doll clothes but a real baby outfit, she clarified. When asked a bit more about this she said it would make her think of Nora as she picked out her outfits. We'll likely be making a trip to Gift and Thrift soon...

We haven't taken a lot of space here on this blog or in our various updates to share the ways that many other family and friends are finding ways to remember and help keep memories of Nora's little life alive. The ways are varied and yet the purpose seems shared - finding ways to both grieve and celebrate, to weave together significant things in their own lives to their remembering of Nora, and to share with us that they are remembering her with us. I could not list them all here but name a few (and happen to have pictures of one!).

Yesterday my sister Karen ran a race that went past our driveway. They dedicated the mile that went past our home to Nora. Kali was thrilled to be present and be the chosen one to take her aunt a water bottle and give an energy boost kiss for the final 2 miles. She also has been playing "party" ever since then with the purple and orange balloons that got to come home with us.

Other things include, but are not limited to, planting trees in her memory, naming a vitamin mix after Nora that will be used to help many children, lighting candles in her memory, and writing poems. What can't be summed up easily here are the times when someone has shared a memory with me or a story or a way that Nora's life has impacted theirs.

One of those emails came recently from a graduate student in our program. A student from a different country and from a faith tradition different from my own. Someone who I have watched with admiration. In an email correspondence about something completely different, she added, "I also learned many lessons from Nora. Whenever I feel weak and under pressure, I just remember her; her strength and patience. Then I feel strong and patient too. Her presence & her memory has helped me many times to overcome difficulties in my life in the US." We did our best in our final hours with Nora to tell her how strong and patient and loved and brave and beautiful of a little person she was. But I could not, at that time, know the ripple effects of her presence. In this case, this student would have seen Nora more than probably any of our family members did during the weeks I was taking Nora to work with me.

We've been working outside a lot these days. This is good for my unused muscles (that I'm feeling right now) and for the spirit. We are spending most of our time working to prepare the area around Nora's garden for additional plants. It is good to work together or at least side by side on various projects in the yard and garden. I find myself getting uptight about not having it "ready" for the event for Nora and feeling the need to have it be "perfect" (what is that?). Then when Jason asks for more detail I find the anxious feelings tend to be pretty nondescript and I can't pin down what needs to be done or fixed just right. He then gently reminds me that more likely these are "anniversary" feelings that aren't so easily pinned down, confined or easily described. And while I know that having things in a state of disarray would be more typical for what we experienced last year, somehow I want it to be right this time - what I have to challenge myself to look at is whether this is for me or for Nora or for whom?

We are also watching with great interest what is happening on our porch - a Carolina Wren chose Kali's bicycle helmet for her nest and is currently incubating 6 eggs on the nest. It is a reminder to me that at a time when my mind goes more easily to memories of loss and the end of a life precious to us, that there is new life springing up all around us.

Ten good years!

Today marks Jason and I's 10th wedding anniversary. One decade together, and hopefully many more to come. We have spent it at home - the place that houses so many of our hopes and dreams for this next decade together. And we have spent it as a family. I continue to be addicted to picking lamb's quarter in large quantities to freeze and Jason worked hard breaking the sod and preparing the next garden bed where we hope to plant tomatoes tomorrow. Kali chattered and "helped" occasionally. She was a bit unsure of going out initially when she saw the 4-5 foot black snake crossing our front walk and then I discovered another one sunning itself on the dirt bank above the walk. I can tell I'm going to need to be a good example on this one, so we went out together and looked at it up close for awhile - familiarity will hopefully breed comfort for the ladies of this family.

These markers (anniversaries, not black snakes) in our family life often take my thoughts to Nora. As much as today has been beautiful, her absence is felt. Kali got her garden clothes on and came out to me saying, "Today I'm wearing Nora things...Nora shorts and a Nora t-shirt, they are both orange." She is on our minds a lot. And this morning at breakfast, it seemed that Kali was a bit more pensive as we talked about the annivesary of her death and various ways we might like to commemorate that and remember her together.

This afternoon, Kali and I went for a walk to check the mail and the cows and the horses. On our way home one of the cows in the pasture had blood all over its face. It looked gruesome, to be honest. I felt like I had to do something. It didn't seem overly concerned with its predicament but it was a lot of blood and it felt cruel to not at least try to let the farmer know about it. I had to make a few phone calls to find the owner of the cows in that pasture and was finally on the phone with Sharon, a very sweet woman that we see occasionally driving in her pick up truck to one of the fields where they raise cattle. We've stopped and talked just a handful of times in the almost 4 years we have lived in Keezletown.

I learned that they had recently dehorned some of the cows. She would go check on it, but assumed that it must have just rubbed it on something and got it bleeding again. Clearly she was much calmer about it than I was, as I tried to describe how horrible it looked (I won't get graphic here).

When there was nothing more to say about the cows, she paused and said, "I don't know if this is okay to ask, but I know the last time we talked you were expecting a baby and were a bit concerned about how the pregnancy was going...did everything turn out okay?" It wasn't long before both of us were crying on the phone. It was about the sweetest, most heartfelt gesture of care I have experienced for some time - a near stranger showing how much she has wondered and worried about our family. She noticed that she wasn't seeing us much on the road and then noticed that I was never out walking with the new baby when she did see me out. She thought maybe she had seen me with a baby once but wasn't sure. She told me how she worried that something had happened and had hoped that things were okay. I couldn't helped but soak up the chance to tell her a little about Nora, as she seemed genuinely interested. She recently became a grandma (just before Nora was born). It was one of those unexpected, beautiful, authentic human interactions. I think the tears were as much from that as anything. Yet they also came from being reminded, in such a short span of time, of the many emotions associated with anticipating Nora's birth, her life, her death and how we find ourselves getting into rhythms once again, but without her.

Mother's Day

I packed a picnic lunch for us to enjoy together outside after church today. The weather was too beautiful to not be outside and a picnic at home would have been nice too but the "to do" list at home makes doing much other than working that down to a reasonable size difficult. So we went to the JMU arboretum, which Kali really enjoys and we do too. It just happens that the last time the three of us took a picnic there was the day we chose to tell Kali that she was going to be a big sister. The feelings today as we sat there were quite different. Mother's Day has not tended to be a holiday we have celebrated in any grand way in the past and this year was really no different. But, emotionally, it felt different: catapulting me back to last year, learning Nora had pulmonary hypertension. And it was a day in which I remember feeling so uncertain about how to mother our girls. I end today feeling some similar feelings as I journey with Kali. We've gotten linked with some amazing people and some amazing resources (most notably Alfie Kohn), that have shed some light for us on how we wish to be interacting with Kali and other children that we have opportunities to care for. Yet on days like today when my emotions are high, I end up mothering in a way far from my ideals. My patience gets used up so much faster. And Kali seems to continually be able to absorb my/our tension like a sponge. But tomorrow will be a new day. I'll end this one cuddling up to Kali in bed for the first portion of the night at least...

At least one thing is getting easier!

Well, I wasn't sure if it was going to be possible, but donating blood is getting so much easier. The hardest part was locating a blood drive happening in the area (and I hate the finger stick to check my iron level - I always jump). Kali got to come along and sit right beside me this time, and she was happy with that (also happy to get to have the snack AND to get a t-shirt without having donated). It also helped that we went to a blood drive at JMU, which is where she plans to work when she grows up since one of the school colors is purple. If only all life decisions could be made so easily!

Something has shifted in me that I actually find myself anticipating with eagerness the 8 weeks coming to an end so I can engage once again in this simple act of giving of myself, in such a real and very tangible way. It is not just life giving for the person on the receiving end of my blood, but life giving for me as well. Today I found myself craving it mostly so that I would be sitting (unable to move or do anything else for 15 or so minutes) and doing something which takes my mind so easily and naturally to Nora. It felt good for Jason, Kali and I to be there together. I was grateful for that time and that connection to Nora's memory and to the ways she inspired me and helped me learn new things about myself.

It's not that there aren't so many other times each day that she comes to mind. There are the fleeting thoughts, the moments where I pause at work to soak up the picture of Kali holding Nora that is on my desk, or when Kali finds again on her shelf the children's book "Noisy Nora" for us to read. And then there are the more poignant moments. When we lost one of our chicks early on (it was just too weak and tiny to keep going - the runt of the group). I'm quite sure my tears were more about Nora than the chick. Or while preparing to share part of the welcome at this year's CJP graduation celebration, in which I could not help but weave some of the ways our journey with Nora was so connected to this cohort's time in the graduation program (I had just finished orienting them when I learned that Nora was not growing well in utero). And then just this week when we took Phoebe with us (without her parents) to a community potluck where someone said to Kali, "I didn't know you had a little sister..."

For me the coming month at work will be very reminiscent of the happenings of last year. As the Summer Peacebuilding Institute got underway last year we were holding out hope that the feeding tube was going to provide some relief to all four of us. And then as each session went by, we found the journey becoming more and more uncertain and scary. I look forward to being able to be more physically present at this year's SPI, but realize too that my emotions will likely be closer to the surface than at some other points in this year. At the same time, I feel I will be able to be, because of our journey with Nora, more fully present to the stories of joy and of loss that the many coming from all around the globe will bring with them. For that I'm grateful!

Empty jogger

Sometimes rubbing salt in the wound is one hundred percent innocent and unavoidable.

Yesterday we took part in the March of Dimes March for Babies that took place in Harrisonburg. We were walking on the "Tres Milagros" team, which was formed in honor of the triplets who benefited from Janelle's extra breastmilk during Nora's life and for some time thereafter. They and their parents have become our friends, and we enjoyed the morning together. Of course with the emphasis of the event being on supporting babies in their health challenges at the beginning of life, we had Nora on our minds a lot.

Kali, even with all her energy, couldn't be expected to walk even the "short route" unassisted, so we transported her in our jogger stroller, the weight limit on which she has almost certainly surpassed. But after the walk we all milled around for a while, munching the provided pizza and hot dogs, playing with the toys from the kids' toys and bubbles table, and generally goofing off. For some reason at one point I was following Kali around at some distance, but still pushing the jogger.

And that's when the unfortunate coincidence occurred, as a friendly crowd member saw me pushing the empty jogger and quipped, "Where's your baby?" This jolted me in ways I couldn't have predicted. It was like a nightmare that lasted for half a second. I think I was able to recover quickly enough to smile at the woman and avoid letting her know there was anything hurtful about her innocent joke. The general public should not be obliged to tiptoe around every little comment that could possibly abbraid the sensitive emotional nerve endings of a grieving parent. It's nobody's fault, and it's nobody's responsibility. It just happened, and it just hurts. And then it doesn't as much, and the ruffled feathers soothe back down, and I can go back to paying attention to the beautiful day.

Chicks

A portion of a longer letter written by Jason to family and closer friends: Today is a big day around here…the chicks have arrived! This morning at around 6:45 I got the call that the Penn Laird post office had our chicks, and I could retrieve them at my convenience. I found it convenient to be there by 7:08. I realized as I drove out our drive that I’d forgotten to brush my teeth.

Upon my returning home with the peeping box, Janelle and I decided to wake Kali so she could bond with the chicks for a few minutes before needing to head off to school. I sat on her bed with the box in hand, while Janelle woke her with a gentle “What’s that sound, Kali?” Kali’s first words of the day were “peep, peep,” spoken with eyes still closed, but through a broad smile...

As with so many aspects of my life since Nora entered it a little over a year and five months ago, feelings of excitement and promise come with other feelings mixed in. In this case, the “other feelings” are hard to describe, but what I’m thinking about when I feel them is that this brood of chicks signals a resumption of plans we’ve been working on since before Nora was even a twinkle in our eyes. When it became clear that Nora’s condition was stagnating right around this time last year, we made the decision to get rid of our last hens and rooster (we had already downsized) and focus on caring for her and the rest of us through that trying time. In addition to the sadness of Nora’s decline, we knew that there was no guarantee that the demands created by Nora’s particular needs would ever subside, and that the adjustments we would have to make to our dreams were possibly quite drastic. We were prepared to make those adjustments, however, if that was what it took to provide for her. Now I feel us, piece by piece, re-engaging with our former aspirations, and the place I find myself in with regard to that reality defies my descriptive abilities. How do I say four things at once? I want to reassure you that I’m incredibly grateful for our opportunity to explore a somewhat self-reliant lifestyle. Simultaneously I know grief: Nora is not here to share it with us...

A tiny bud

This past Saturday held another one of those moments that brings me up short. I was walking across the rug in the living room when something on the floor caught my eye. Sadly I realized that it was a walking iris bud that had somehow been prematurely disconnected from the plant, just a day before it was set to open its gorgeous delicate petals. The sadness I felt in that moment was so incredibly disproportionate to the situation at hand. My thoughts: This little bud will never be a flower. There is nothing in the world, as much as I may want to, that I could do to make the tightly wrapped petals unfold.

Kali was there with me. I found myself saying out loud to Kali that this little bud just doesn't have now what it takes to become a flower. Sunday morning I watched as three other buds slowly opened up, revealing their striking purple and dark brown centers. Three flowers bloomed and one remained closed. Now it sits shriveled beside me on the desk no longer strikingly different from the other flowers that bloomed for one day and then shriveled.

Yesterday a wonderfully caring friend gave me a CD that has the song "Nothing is Lost on the Breath of God" on it. As I listened to it last evening the line "no flower too brief in its glory" stuck out to me. I told Jason through tears last evening that that song in so many ways articulates what I hope and wish to believe about the world. And about Nora's life and death. But clearly I'm not quite there yet. That little flower bud for me was a flower that didn't get its moment in glory. From my perspective, it was cut short too soon. Something about that little bud laying there felt tragic and sad to me.

Only Four Words

This week I had an unexpected, in the end helpful and I think healthy, exchange with the leadership of a local Mennonite congregation. I pass this church several times a week on my way to take Kali to school. (I should note as a backdrop to this story that I don't tend to be overly appreciative of the little phrases that are chosen for church signs. I usually am able to laugh, shrug them off or just realize that it may just be another way that I'm unusual; I find advertisements to be pretty obnoxious a lot of the time too.)

This one, however, got me. It made me mad. It made me sad. It felt trite, and uncaring, and out of touch with the lives of real people - likely more than just me - driving by. Only four words, but they stung: "Death died on Easter."

I feel quite certain that there was no mal-intent on the part of the sign chooser - and that was graciously confirmed and the sign changed in less than 24 hours after I sent an email expressing my concern on how the sign could be perceived by families who are "freshly" grieving the loss of a loved one or who are currently journeying with a loved one who is dying, as a close friend of mine is doing right now with her mother.

I also realize that there may be some who actually find these words comforting. And some who would feel more theologically in tune with the sentiments behind this phrase. That being said, it is hard for me to imagine that a large percentage of persons driving on this main thoroughfare would not find the sign either perplexing or offensive.

It is quite clear that people are still losing loved ones on a daily basis. People are dying - whether my friend's mom to cancer or persons embroiled in conflicts raging across our globe. And those that have died are missed. Those left behind grieve.

It's not that I've been blind to the new life all around us this spring - the lambs frisking about in the pasture on my way to work, calves coming up to the fence to see us when we pass on our walks, yellow flowers everywhere popping up amazingly often in sets of three, babies of friends being born and the rising excitement in our household over the chicks that will be arriving in less than a week. It's not that I don't celebrate those welcome signs of the earth rejuvenating and the cycle of life continuing. Somehow, though, I want to move towards a place in my life where I can more readily accept, celebrate, grieve, and be part of the full cycle.

Just today I had one of those moments where I had a pang of guilt for soaking up a tender moment with Kali. We were outside and it felt so like the few days we went out last spring with Nora in the snuggli. Irrational or no, I felt like I was somehow being untrue to Nora's memory to be happy to be there, Kali and I, enjoying the fresh air and warmer temperatures (there without her). Death is a very real part of our family's journey right now. For me Easter does not bring with it any magic power to remove death from our lives, though it may symbolize in the tradition I'm steeped in that there are ways in which those who live faithfully, courageously and fully continue to be present to inspire, encourage and spur us on.

Winter...

I am realizing, once again, how I feel drawn to use this blog for different purposes at different times. Lately, when I feel the urge to write something, I find that I have a new audience in mind, and audience of one: Kali. For whoever else may land on this page, I could wish that they might find something helpful or inspiring or comforting, but it seems that that is not my (current) main goal. I find myself wanting to not forget to put snippets here that some day down the road when Kali is old enough to think about, care about, want to know about this time period in our family's history she will find bits and pieces of her process woven within (and I can't help but hope that maybe it will trigger her own memories, or possibly some much desired explanations for her parents or her thought processes in these days - I know that that is likely very wishful thinking).

For example, the other night we were in the middle of the nighttime routine. She was sitting on the potty. Out of the blue, Kali asked me something like, "What season was she with us for all of it?" It was clear that I was being included in this thought process somewhere midstream as there was no lead in and she assumed I would know exactly what she was referring to. I did. And inside I felt glad to see that she continues to ponder her sister's presence with us, even if she only lets us in on it occasionally. I replied, "Winter" but when seeking any additional information regarding her thoughts, I was not granted more. She had received confirmation of the information she was seeking and was on her own once again...

Kali and I got to spend some time with the triplets again the other day, and introduce my mom to them! It seemed to take Kali a good 45 minutes to settle in. I'm not sure if it was the fact that Carina (her "favorite" triplet) was decked out in pink, which Kali has developed a strong aversion for, or if Kali was just tired out or if for her, like me, there is a strong emotional connection to these little people that reminds us strongly of Nora's life. I may never know. What I did notice in myself was that it was the first hour or so that I haven't thought about how I was feeling physically for weeks. As soon as I got in the car to leave, I felt the various aches, sensations, discomforts I've been experiencing now for weeks and it hit me that I had just enjoyed an hour free of it, fully immersed in the antics and cuteness of three very special little people.

Time for thoughts...

Kali has once again sacked out in the recliner before 6pm. While I'm ever so grateful for the alone time this occurrence gifts me with, it would be better spent time if I was not spending part of it worrying about her health. It seems that if nothing else gets our attention and makes us slow up, our bodies will require it! I've been feeling "off" physically for a good month or more now, but have been hesitant to seek medical care because my various symptoms are not causing me any extreme pain, just general miserable feelings. And a good number of them, like the tightness in my chest, seem so clearly connected to life circumstances more than anything else. Nothing sticks around long enough to be a clear ongoing symptom, but they all lead to me spending more moments than I would like to worrying that something serious is wrong. Kali is more decidedly sick and my lingering symptoms coupled with her fever and extreme tiredness finally motivated me enough to make an appointment to have some blood work done on Monday (on me initially and hopefully Kali will be bouncing back by then and we can avoid that potential ordeal). I'm still very well aware that I may learn nothing more than I did at the dentist a few months back when I went for my tooth/jaw pain: "you must be under a lot of stress."

In so many ways today has been a "good" day - if we care to judge the quality of a day. I'm at home. Jason is at home. Kali is at home. It is warm enough to open windows and get a cross breeze through the front room, which I'm enjoying as I write. The open windows allow the sounds of Jason working out front to filter in. Kali and I enjoyed a walk past the cows and to the horses, me walking with her riding in the jogger which she has nearly outgrown. I conjured up enough energy to mix up a batch of french bread which is rising and will be enjoyed hot out of the oven for dinner. I had time enough to putter, doing various small but important household tasks that have been building up this week (emptying the trash and paying some bills to name a few). And most importantly, Kali and I enjoyed lots of "cuddle" time together while making quick progress through Alice in Wonderland, which she was just given (which, by the way, struck me as a very odd story after not having read it since childhood).

Yet when I stop to check in with myself, I find that for whatever conglomeration of reasons, I'm in a space where I'm having a harder time relishing life. And I have a tendency to want to place judgment on the space I am in rather than accepting it for what it is, and also accepting my limitations within it. I feel disappointed in my inability to not only see, but treasure, all the beauty around me. It's just that what I want most is not possible. Yet life is so often like that. I just sometimes have more energy, stamina and strength to accept it. A statement in the little bulletin we just got from RMH Hospice resonated with me: "It has been many months now since you experienced your loss. We understand that grief takes time and you may still be struggling with feelings and changes that seem harder than before..."

One of the most helpful things for me lately has been the connections we have had once again with some of Nora's care providers, all within a strikingly small window of time.

First we received the news from Dr. Braddock, the geneticist that worked with Nora and us, that Jason's poem Surf was indeed published in the American Journal of Medical Genetics (with the following Editor's note: "The following poem is a stirring piece written by the father of an infant girl who died with a novel syndrome. The words resonate with anyone, but especially with those who care for children with life-threatening conditions.") See our October 30, 2008 blog posting for the actual poem. He also shared a bit of an update on the ongoing research he is engaged in regarding Petty Syndrome, which is the novel syndrome Nora had.

Then at work the other day, I was surprised to receive a "check in" visit from the person that worked with Nora here in Harrisonburg (through the early intervention services we were hooked up with). She was driving by and just "had to stop" and see how I was doing. I don't know if she will ever comprehend how much that meant to me. Tears surfaced quickly as we were talking about Nora and as she shared how she would never forget her even though it was only a brief time that she was able to interact with her. I could feel myself just clinging to her every word.

Most recently, we heard from Dr. Crain who cared for Nora and us, during Nora's final days with us. In addition to just staying in touch, she was checking in about our possible interest in co-authoring a paper with her (likely reflective in nature) for the Archives of Pediatrics and Adolescent Medicine on something related to palliative care, dying, and bereavement. While we know very little about where this would lead or what it would entail, Jason and I both had very little doubt that this was something we would be so privileged to be part of and that the process of writing and reflecting would help us continue on our healing journey.

There is a common thread in all of these interactions that I realize is likely what makes them so powerful for me. The three people above knew Nora! They met her, they touched her, they interacted with her and they interacted with us as we cared for her. And we knew them only because of Nora. Clearly there is no way they can now form (nor would we necessarily want them to) the hub of our support network as we grieve Nora's death. However it is something that I also find myself grieving; that many people that we love and care about never got to spend much time, if any, with Nora.

Well, Kali is awake and clearly in need of tender loving care (and a lot of coaxing to take a fever reducing medication which she wishes desperately to avoid). How to communicate to a five year old how much better it is to drink, eat and take medicine orally at home, than to need to be cared for elsewhere and in much more invasive ways??

In honor of Nora!

If someone had told me two years ago that one day donating blood would be a healing ritual for me I would have wondered what turns life would take to bring me to that place. And that is where I find myself. Sweaty palms, shaking cold hands and all, I find myself dreading and eager to partake in this simple yet profound ritual of facing this relatively small fear in honor of a little person who so greatly impacted my life. I wore orange for her today, and it seemed fitting that Kali got to choose the purple bandage for me at the end (and Kali was a charmer and was gifted a role of purple bandaging to bring home to take care of her stuffed animals). Jason joined me in giving blood today as well.

Three yellow flowers...

The last number of weeks have been tough! It seems that the second half of this first year is in some ways more awkward and challenging than the first. Who knows who is still thinking about Nora when they see our family of three, but the grief journey (for better or worse) has transitioned to a more private stage that sometimes carries a bit of loneliness with it. And for a perfectionist like me, it is not always easy to be gentle with myself or know how to ride out my emotions when the many home and work demands make it hard to find time to even sort out my own feelings, let alone know how to share them with those around me who might care about how we are doing. I've also been discovering, or more boldly owning, and exploring the roots of some things in myself that are completely unhelpful in this grief journey (and in life in general): one in particular is that I care way too much about what others think of me. So I hesitate to share my raw thoughts and feelings, particularly about Nora, for fear of how I will be received and what others will think of my needing support when it is now well over six months since she died and by all external accounts our home is "back in order." But my do I miss her these days and sometimes need more than anything the space to "emotionally exhale."

While I claim no particular symbolism to this happening, when we were in West Virginia last month Nora's birthstone that was put in my engagement ring as a Christmas present fell out. It's tiny and I discovered it missing in a moment when I had the impulse I often did for the month or so after Christmas to look at it and think of her. It was such a sinking feeling to instead see a hole in its place, much larger and emptier-looking than the hole that the previous stone had filled. Somehow that event marks, while not being the cause of, a time period in which the hole of Nora's absence has been felt keenly by me in our home.

It's the small things, like last evening when Kali was putting on a play for us and I was sitting by Jason and had the most vivid moment of imagining a toddler clambering around my knees (while I knew full well that likely that little one would have been trying to be part of Kali's play).

Or our first meal at the new dining room table Jason just finished when Kali asked who the fourth chair was for. Three chairs just looked silly to me and clearly it was a design that works just fine for three but beautifully for the four we had hoped to have seated regularly around it.

But most striking was Jason's voicemail to me today (an unusual occurrence in my work day) announcing the presence of the first three yellow flowers blooming in our yard. That had been Kali's chosen sign for the time when we could take Nora outside with us- a symbol of hope, of Springtime, of warmth and change.

Recently I chose to check back in on our blog because sometimes the details of last Spring are all mixed together yet I wondered why I was feeling so emotional of late. It was almost exactly a year ago from the time when Nora plateaued in her weight. It's like our bodies know things our minds can almost not bring to consciousness. I remember in the Fall how walking outside would take me back to going into the NICU with Nora. It seems that this Spring there are other things about this time of year that make all my senses travel back to the previous year. I can only imagine this is par for the course this first year and in many ways I welcome it. The challenge is choosing, prioritizing, carving out the space to be present to those moments and to allow them to become part of the healing journey we are on.

It was one of the reasons church, which has often been a difficult place for me to be lately, was very meaningful for me this Sunday. Kali was happy with the kids, allowing me to be fully present to myself. It was music Sunday and the final song of the morning was Nothing is Lost on the Breath of God, a song we first heard sung at Nora's memorial service, though the words were shared with us prior to that day. It will always be associated for me (and possibly a good number of others at our church) with Nora's life and death, and is a powerful evoker of emotions in me:

Nothing is lost on the breath of God,
nothing is lost for ever;
God's breath is love, and that love will remain,
holding the world for ever.
No feather too light, no hair too fine,
no flower too brief in its glory;
no drop in the ocean, no dust in the air,
but is counted and told in God's story.

Nothing is lost to the eyes of God,
nothing is lost for ever;
God sees with love and that love will remain,
holding the world for ever.
No journey too far, no distance too great,
no valley of darkness too blinding;
no creature too humble, no child too small
for God to be seeking, and finding.

Nothing is lost to the heart of God,
nothing is lost for ever;
God's heart is love, and that love will remain,
holding the world for ever.
No impulse of love, no office of care,
no moment of life in its fulness;
no beginning too late, no ending too soon,
but is gathered and known in God's goodness.

words and music © Colin Gibson 1994

The tears this time were mostly tears of yearning and of loss. While the music is comforting, particularly when sung by a community of people I care about and who have expressed care for us, the ending felt way too soon...