Jason, Kali and I returned late last evening from a weekend in Pennsylvania. Jason and I savored two nights in retreat just the two of us, thanks so my folks who cared for Kali during that time. Jason and I spent the majority of the time working down our 150 plus pages of updates into less than 10. We realized that we can really enjoy the process of working on something like this together if we have the time to dedicate to it. It was an emotional process for both of us, but felt so healthy too! We will be sharing this Sunday with our faith community, Shalom Mennonite Congregation, snippets from our year with Nora (and we welcome any others who would like to attend - be in touch with us if you need details).

Mom and Kali made a birthday cake for Nora that we had upon our return. Jason's parents joined us for the evening. Bittersweet, of course... I couldn't quite muster the strength to suggest that we sing Happy Birthday.

Wind and Waves

A few hours from now marks exactly one year’s time since Nora made her entrance in the world. She looked out on us with no judgment. I’ll never forget the first sight I had of her, the relief that whatever else might be wrong, and that she might not be able to do now or ever, at least she could cry! I’ll never forget the power of her birth, and the beginning of our long journey towards acceptance and celebration and joy in the midst of painful mysteries. Those sweet moments with Janelle in the delivery room are memories I carry with me like smooth stones in my pocket. I reach down in and feel them from time to time (for more detail, see Janelle’s excellent reflections accompanying this document). I will also never forget the moment, an hour after her birth, when I was permitted to go meet her in the NICU, where I took my first long look into her bright blue and innocent eyes, trying to understand that this child was mine, and where I learned the first, long list of unusual and inconclusive findings which might hold the keys to a horrific destiny for our family or might fade in importance. I can’t forget the blackened forms that filled my mind when my eyes closed for the first time later that morning. The year that has passed between then and now has been, without question, the longest year of my life. There are parts of it that I wouldn’t wish on anyone, but now we have come too far for me to wish any of it away.

Was it good timing or was it not for us to participate in a retreat organized for the Initiative for Pediatric Palliative Care this past Sunday, Monday, and Tuesday? I suppose I can’t know what not going would have been like, but I feel so glad to have been there.

If I understood it correctly, the intended purpose of the IPPC retreat was to advance the cause of compassionate, competent, and family-oriented care in the context of life-threatening illnesses in children. What became so apparent to me throughout the event was that the people behind this initiative “get it.” They get the difference between doing medicine “right” and doing it “well.” They get that each action that is taken, each person involved at such a time as the death or illness of a child is connected to all the rest. They get that caregivers are human beings who have untold and underutilized powers of creativity, as well as the capacity to make mistakes. They get that families and patients who are afforded respect may have the capacity to surprise, forgive, contribute, and even offer enrichment. They get that we need each other’s help to provide for children in these situations. They get it that the barriers to improvement are daunting and discouraging. They are watching those barriers slowly crumble.

Have I ever before been in such a fertile ground? I felt I was engaged on so many levels, in so many ways. I was engaged as a listener, as a science nut, as a poet, as a spiritual being, as a citizen, and always as a grieving parent. I was there to offer my experience with the medical system, and offer it I did. Perhaps I was simply unprepared for what the experience had to offer me, not the least of which was the sense of sheer gratefulness for how well “the system” (a few key individuals who “get it” made all the difference) did perform for us (especially when compared to others’ experiences). The beauty of our experience in the middle of one of the most technologically and scientifically advanced medical institutions in the world is testament to the truth, namely that the approach put forward by the IPPC has the power to transform the arena of loss for families.

Perhaps it is incidental to the intentions of the retreat, or perhaps it is part of the whole, but I find myself periodically immersing over the past twenty-four hours in reveries of contemplation concerning the spirituality of medicine. Both Janelle and I come from medically connected families, so recognizing medical professionals as whole people full of the same human potentials as all of the rest of us comes very naturally for us. In any case, I am finding the notion of medical facilities as spiritual places and medically connected professionals as spiritual co-creators with the rest of us to be compelling in the extreme. People who know me might know that I don’t talk about spirituality much these days, because I find many conventional spiritual forms largely empty of meaning, and because I find their tendency to value ignorance dispiriting. Participation in honest and unassuming searches for truth is vital to my sense of wonder, which is why I find so much inspiration in my admittedly amateur and casual pursuit of scientific understanding. In a way, using the word “spirituality” for what I am talking about may be misleading to some, and they may find more truth in replacing it with the word “meaning”, or the phrase “meaning-making.” But for me it is not an inaccurate designation, because the swells and currents I sensed among us seemed to be occurring at levels we would all struggle to define, and the life and death passages of children and their families compel us all to handle our most cherished values and notions, and carry us far beyond our abilities to control or comprehend.

I wrote the following poem this morning:

Surf

For those who care for dying children

Mine was
a swamp I had to traverse (I am
still wiping the mud from my eyes), but you do
this every day, and then you have
to go home and eat
your dinner.

It must come on you like waves, lapping, tumbling, crashing
even; never resting. And so maybe you are one of
the rocky ones, hardened against the breaking water, protecting your
shape, preserving the mainland. Or are you are the sandier
shore? Do you allow the waves to change
you?

Here is something I believe about you: no matter how you
bear the surf, there must be a place in you where a little water
collects. I wonder: have you ever, when the tide is low, gone there
and taken notice of how beautiful that pool can be?

Perhaps sometime we could go walking together, exploring the
crevices or scanning the sand, stooping to retrieve those
curious and delicate
treasures the waves have
brought.

Jason Myers-Benner
October 29, 2008

A day of remembering...

9pm and the emotions have been clearly surfacing in this household this evening. As the day has progressed, it has been hard for me to not find myself traveling back to one year ago as we left home to travel to UVA for induction. At this time Jason, Melody (wonderful friend and midwife companion) and I had finished a round of Yahtzee and were just gearing up for playing Rook, while I balanced on the birthing ball. Thinking back I’m filled with more good memories than not. We did a lot of laughing (in between contractions) and, like with Kali, I found myself fully focused on the task of birthing our daughter. We went into the day with much to fear, a lot of hope and so many questions. But from now until about 1:30am when Nora was born, I was laboring to bring her forth and welcome her into our world.

Now as I think about celebrating her first birthday in a few short hours, I experience a flood of emotion. It seems that it is likely to be one of those nights (using my ocean metaphor for grief) where one wave doesn’t make it to shore before the next one comes pounding in.

As I walked toward the house tonight and saw Kali and Jason walking towards me from the garden area, I felt so full of gratefulness for them and for our home. Kali is growing up and is healthy and I just wanted to hug her for hours (which she wouldn’t stand for since they were just gearing up for a “play break.”) So instead I walked into our front room alone, safe at last after a long day in the office to be with myself and to feel, for a moment at least, what had been building in me since morning.

I may have been alone for that moment but one of the things I feel more strongly than I did at many times over the past year is how clearly we are not alone. Just today I’ve felt this wave of support wash over us as we have received a few cards from close friends and phone calls to check in on us as we commemorate Nora’s entrance into the world. And if that was not enough, the last 2 days spent at UVA reinforced again for us how unique and how universal our journey with grief has been. How human it is! How heartbreaking it is!

Jason and I returned home yesterday afternoon after 2 full days at UVA at the IPPC retreat (see http://www.ippcweb.org/ for more information about the Initiative for Pediatric Palliative Care). In a nutshell pediatric palliative care is working to enhance family-centered care for children who have been diagnosed with life-threatening illnesses. We had the privilege of attending the retreat as Nora’s parents, along with about a dozen other bereaved family members. Core to the IPPC model is the integration of family members into the process of learning about and improving care for children. While it seems like a no-brainer in many ways, it is something that for many reasons which I won’t go into here has been resisted by many in the medical community. It felt like a privilege to be a small part in this amazing movement.

Selfishly it felt timely for Jason and I to have these 2 days back at UVA within eyesight of the University Hospital where Nora was born and where she died. Jason and I arrived about a half hour early, in time to walk the block around the hospital during which we both recalled times when we “escaped” the intensity of the 7^th floor for a bit of fresh air. This time we walked past the hospital doors and on to Jordan Hall where we would spend the next two days immersing ourselves in our memories and joining ours with the stories and experiences of other families and of the care providers who choose to walk with families through life and death in amazing and powerful ways.

The retreat was organized mostly around a number of small groups, made up of health care professionals and several family members. We journeyed together through several portions of the IPPC curriculum, sharing experiences, challenges, questions, tears, thoughts and encouragement. My overarching disappointment was that it felt like such an inadequate amount of time. It felt like we had just barely scratched the surface and it was time to go home. It’s my greatest fear too as Jason and I work on compressing our 160 plus pages of writing into about 10 minutes of sharing for our faith community next Sunday. What do you say? Where do you start?

In the moments that Jason and I had to debrief from our day, I tried to sort out what it was that left me feeling some nebulous sense of dissatisfaction about the experience. I felt so honored to be there, so cared about, so appreciated and valued for the contributions that we brought. Granted we only arrived home yesterday so we’ll be unpacking from this experience for many days to come, but the only thing I’ve laid my finger on yet is how I wanted to share Nora with everyone there, in all her complexity and in all her giftedness. I felt like the gathering was like a fountain of experience that just kept coming and coming and coming. We all got to share snippets of our own journeys and I weave many of those now into my own. But for me, someone who enjoys diving deep into the depths of human experience, it felt like we never got past the shallow end of the pool.

It is kind of like how I feel when I look at the photos of Nora on the poster presented at the conference in Canada in August. She is presented as “case 1” and there were a number of pictures of her various physical features that deviate from the norm. I understand that our journey with Nora is like a big mysterious puzzle with many pieces to fit together and I understand that Nora’s little body is also quite a puzzle. I understand on an intellectual level that segmenting out our journey and looking at various portions of it is helpful in getting a sense of the whole and that studying Nora’s various features can give insights to the medical community that may benefit other families and children down the road. But that is on an intellectual level. On an emotional level, I just want to talk and talk and talk about her. I want to share my memories over and over again so there is no chance they will leave me. It feels so odd that I made it through two full days of the retreat without every telling anyone about how Nora would play with her binky for hours trying to figure out all the parts!

We had several “parent meetings” over the course of the retreat and each time it felt like it was over almost as soon as it started. I looked around at parents who had lost children much older than Nora and after a much longer struggle and I wondered where they drew their strength from. The first night when Jason and I were laying in our hotel room debriefing I told Jason that I just could not imagine how I would survive if Kali was diagnosed with cancer or some other life-threatening illness. The session that drew the most emotion out of me ended up being the one on talking with adolescents about their own death. It was in that session that my admiration for the health care providers who care for children who are dying multiplied. I did not choose to spend close to two months in the Children’s Hospital at UVA and many times I wanted to run fast and as far away as possible. But the nurses, doctors, social workers, chaplains, educators and others gathering at this retreat have chosen this profession. They care and they care deeply. And they have discovered, as I did slowly over the course of Nora’s short life, that these little people have so much to teach us about strength, courage, hope, honesty, joy and love for life, no matter the hand you are dealt.

Some moments I feel so grateful Nora never fully comprehended how unfair life was to her. I can still feel pretty angry about it some days. But I realize that the way I view the world is not necessarily the way our children see things. Tonight Kali and I were looking at pictures of Nora. I mentioned how there were things about Nora that did not look like most people but we thought she was beautiful. Kali wanted to know what was different. She listened to my few examples and then boldly exclaimed that to us Nora looked perfectly like a baby. Kali still wants to make her a birthday cake that includes some orange and tonight she clasped her arms together and said that we could pretend to hug her. I joined in but how I wish my imagination was even half as rich as Kali’s.

Monday evening was a night of hearing one of the ways that Nora’s legacy lives on. We met Dr. Braddock (Nora’s geneticist) for dinner to catch up and to go over the autopsy report. Yes, it was one of those strangely surreal moments. I have them every now and then where it is almost like a camera snaps a picture of the moment and my mind captures it and ponders the irony in it. On one hand we were good friends enjoying good food together. There was laughter and conversation to share. But it was Nora that had given our paths reason to cross. And it is still Nora that keeps our connection alive. So there we were learning more about the causes of her death and the complexities of her life. She has made much greater contributions to science than many of us do in a much lengthier life. And as Jason noted through tears during the family panel we took part in “Nora loved her life” for what it was.

As months and years go by, I know the experiences of this past year will continue to shape me. There is no doubt that when faced with my own death, I will think of Nora’s little body in my arms. I never wanted my child to show me how to die, but Nora did and she did it courageously. But I’m not ready to say I’m comfortable with death and have far to go in coming to peace with Nora’s abbreviated stay with us. There was mercy in it, no doubt. And I’m a full believer in quality over quantity in much of my life. But this generation flip flop just cuts deep to my core. For whatever reasons there may be, it feels deeply ingrained that this is not how it is supposed to be. Life isn’t a neat package of things as they are “supposed to be” and in some ways I’m so grateful.

Last night Kali, Jason and I found ourselves dancing boldly to Garth Brooks in our kitchen (thank goodness for no neighbors within site of our curtain-less kitchen windows). It felt right up their with my “mud puddle jumping” experience, chronicled in a previous blog posting. I felt genuinely happy and full in that moment. And that happy full feeling ran pretty deep. I have experienced life’s paradoxes in a deeply personal way this year and one of the surprises in it for me has been how my experience with deep pain and grief has gifted me with an ability to feel joy and happiness on a level that I have also never recalled. As Mom has often said to me, “there is no great loss without some small gain.” I hope I can continue to grow in reaching towards rather than running from life’s paradoxes. There is much to gain from living in and through them.

A Warm Center

Read the post immediately preceding this one to get Janelle's good overview of the past few days, which have been meaningful for our family (this does not imply pure enjoyment, but rather a density of importance).

I've been spending my day making progress on a pair of tables for our kitchen and dining room. As working alone is my best way of processing life's events, I was also making internal progress. At the CJP service for Nora and our family, I was in the same kind of space I usually am in public social settings: taking it all in. I also had many occasions to express thanks...so many CJP people have been so supportive to us. But I write now with the feeling that the thanks I was able to offer on the spot was insufficient to express what I intend towards those members of the CJP circle. I feel grateful towards each person who contributed to the service itself, who knew the love and the loss of Nora with us and crafted their own expression of that love and loss, or acknowledgment of ours. I love and savor silence and darkness, and find that even the silence and darkness that signify Nora's absence are not enemies of my happiness. However, they can be painful spaces to be in. What keeps the associated pain from becoming overwhelming are the caring voices that enter the silence from time to time, and the lights shining in. This has been our experience all along the way, and we know how fortunate we have been. It was so comforting to have Mert's exceptional stained glass creation to bring home with us as a symbol of the CJP community's caring and good will. (Truly, the photos do the piece no justice. You must see it in person to appreciate it and understand the care, time, and skill that went into it. One of my life goals is to not gush. That's the only reason I'm not). I'll carry these feelings around with me for a while; they warm me from the inside.

I have often, through the years, found reasons for enthusiasm concerning Janelle's employment at CJP. The Center has its systemic flaws, just like any other. But there is a goodness in its middle that, like the flame represented in stained glass, draws people together, and draws the warmth and goodness from those people. I feel privileged in a big way to be included and welcomed in that community.

Tomorrow Janelle and I leave for UVA to participate in a Pediatric Palliative Care retreat (focused on improving care for children with life-threatening illness). Due to the structure of the retreat, there is no way to materially prepare for our participatory responsibilities. Perhaps this is a blessing in disguise, since it causes me to remain aware of an alternate form of preparation: preparing our hearts and minds for openness in the presence of pain. Living with Nora and living through her death instructed us in that discipline, but can we bear the lessons on into this time, and into our living? We can hope!

Tears and mud puddles

This week has been such a mixture. Thursday evening all three of us were quite emotional. Kali and I had stopped on our way home to print a bunch of pictures for a little album we have. I think I underestimate how these small events impact each of us on a deep level. Kali and I were kneeling there in RiteAid watching pictures spit out of the machine one after another - Nora vibrant and smiling, Nora weak and on oxygen, Kali caring for her, me kissing her... It was like a flash back in fast motion of memories of a short but intense 7 months. We brought them home and in between a number of emotional outbursts from Kali (about seemingly, though possibly not, unrelated things) I got them in the album and then went to help Kali get in the bathtub. I came back to find a tearful Jason with the album in hand. I had come back to him for solace myself as I found myself in tears as I went to hang up Phoebe's diapers, which we had offered to take care of to alleviate a small detail from our good friends who needed to leave home quickly to travel to be with a very sick family member. It was the first time since Nora's death that I found myself hanging up cloth diapers. It was one of those amazingly good and painful moments. Cloth diapers seem to many a huge chore but there was something so satisfying about the rhythm of it and I love the sound of shaking them out before hanging them up. It was bittersweet to have them hanging in our back room on drying racks. Kali, of course, took the opportunity to snitch her favorite diaper cover to properly diaper her CPR Teddy. While I was at work she had swiped all the covers off the rack and sorted them to find her favorite to use. She has always loved helping with diapers!

I was so grateful when Kali finally fell asleep Thursday night. It had been a tear-filled evening. Thursday evenings tend to be a time of letting out pent up emotions from the school and work week. Looking back Jason and I also wonder if she was experiencing some anxiety as we anticipated and talked about a service that my work was hosting on Friday morning for our family in honor of Nora's upcoming birthday.

The service was held in Martin Chapel, in the same space where we held the memorial service for her days after her death. The music, pictures and sharing all brought on many tears and I think I cried more freely than I did at the service we had planned. It was such a gift to have this time planned for us by a community that has been so supportive of our family since the moment that we learned that Nora was not growing well in utero. I continue to feel in awe of and grateful for the way my workplace struggles with how to be an efficient organization and a community that cares for each other as people.

Students, faculty, staff and alumni had gone together and commissioned Mert Brubaker to make a stained glass piece for us. Mert is a friend of our family and someone who had had a chance to spend a bit of time with Nora. We had talked briefly with her about some ideas but could not have conceptualized ourselves anything that would have captured more accurately the beauty, depth, and complexity of the 3 seasons of the year and the moments of our life that Nora shared with us.

I loved that the space we were in for the short service was interrupted from time to time with the sound of a baby making their presence known. It felt so right. And it also felt strangely appropriate for the slideshow music to not work as practiced and planned and for the little tea light candles to light the cloth under them, starting a small fire that was quickly snuffed out. Our year was full of so many moments that the carefullest of planning could not have prepared us for. And I've been deeply impacted by it.

Last evening and today have been days full of spontaneous family fun. We've played a good number of games, which is becoming quite common in our household. Kali and I just returned now from getting the mail. We got delayed at the bottom of the driveway because there were huge puddles there from the rain. I watched Kali for a good long time, once again amazed by her ability to completely let lose and jump right into the middle of a big puddle, sending muddy water everywhere. I can't think why at this moment, but I've never felt completely free to do the same. Until today that is! We were both pretty soaked by the time we arrived back at the house. Kali is out of the tub now, the laundry is ready to hang on the line and I feel grateful for these brief moments of play that feel so freeing.

It seems odd that a year that was so intense, so void of a lot of light hearted play and laughter, could be bringing that out of me at a time when the tears are also more abundant and the ache stronger. It seems that one of the gifts I'm receiving is finding ways to savor the precious moments, realizing just how precious they really are. I was trying to savor one of those moments at dinner last night when I leaned over and gave Jason a kiss. Kali looked at me with a silly and puzzled expression and said, "Why did you do that. That's unreasonable." Unreasonable is good sometimes!! :)

Wild, Wonderful, West Virginia

This is Jason writing, and I will hope to explain the meanings of some of the photos to be found at:

http://picasaweb.google.com/bennerj8/WVATripOctober1619#

by way of briefly recounting our weekend. A preliminary bit of information to know is that there is a reason that Kali's visage looks a tad distorted (it seems only extremely familiar or visually perceptive persons are capable of noticing this). While preparing a load of old cruddy packing palettes and creosote (I think) timbers for the landfill on Wednesday morning, we inadvertently disturbed a yellow jacket burrow, resulting in Kali getting stung on the hairline of her forehead. Parents hate that kind of stuff. I'm pleased to see, however, that after the initial terror stage, she seems to take that kind of discomfort pretty well in stride.

No pun intended. What I mean is that Kali and her swollen forehead "strided" all the way up to the lookout deck of the Seneca Rocks recreation area. That involves 1.5 miles of hiking up (and another 1.5 miles down), with an accumulated vertical ascent of 1,000 feet. I'm not saying she didn't complain at all...she just didn't complain about her forehead. Really, though, she did very, very well for her age (only requesting to be carried once on our descent after tripping over a root).

For those of you who don't know, Seneca Rocks is just over the Allegheny Mountain from Harman, WV, where Janelle's mom was raised. Mom and Dad Myers keep a home there that has been a place of respite and hope for many. We were there this weekend with our good friends for a weekend of fun, food, swings, food, philosophizing, food, mutual support, food, mountain comforts, and food. We always eat well with their family.

The photos of us digging in the dirt document the placement of four tulip bulbs of a purple variety (Kali was a bit awe-struck at having happened upon the package in the Rockingham Co-op here in town a few weeks back) around the Service Berry tree that we planted in the yard of the Mountain House this summer in memory of Nora. Assuming the squirrels don't make short work of the bulbs, we look forward to their blooming in spring.

There were ample opportunities, most especially while hiking Seneca at the peak of the autumn leaf display, to realize just how different this treasured time would have been if Nora were still with us. It has also struck both Janelle and I how it feels like it has been two years since we have really been able to notice the full transformation of the outdoors in the fall (as Janelle was on bed rest in October and we spent November in the NICU).

As we prepare for Nora's first birthday coming up this October 30th, we can't help but feel some gratefulness for our freedom of movement, even while still missing her keenly. I don't know if "carefree" can ever describe our family again, simply because of the complicated emotions our journey of love and loss inevitably brings. In a way, that is a gift, since I feel the other side of that coin is that we don't take our health or freedom for granted nearly the way we used to. Always present in our minds, too, are those many families who are still searching out their own best paths as they live their days with unresolved questions about their beloved's genetic condition and potentials. While we don't have any magic to offer them, we feel compelled to apply what we've learned about community support in the face of living tragedy in making ourselves a practical resource for them.

A good weekend, and hopefully helpful in rejuvenating us for the Palliative Care retreat coming up soon, as well as Nora's birthday and a presentation we're making at our church Nov. 9, concerning our family's journey.

Giving blood!

Jason and Kali are out trying to successfully get all the things on my grocery list for me. Since their list of errands has delayed their arrival home, I lit my candle in silence and sat in our hammock alone for awhile. What I'm feeling most this evening is gratefulness for the ways Nora's life and my journey of parenting her continues to provide me with strength.

For example, I gave blood today. Those that don't know me well may think this seems like a petty example. For those that grew up with me or know me well, it is huge! Nora's life proved to me time and time again that I can do things I never imagined I could do. And that there are many gifts to be found even in the pain of it. Giving blood is hardly painful, but I still manage to almost faint every time and I do not have a history of putting myself through that process voluntarily (I attempted it one time over a decade ago when I was a student). Each year when EMU has their annual blood drive, I have a twinge of guilt and wish I had traveled to some country that would nix me off the list of possible donors. In the past my tendency towards low iron levels would also offer me an easy escape. Today I cleared all hurdles with flying colors, with no excuse other than my fear (not of the needle as much as the embarrassment of passing out).

Nora was almost constantly on my mind. Thinking of her struggle for life and her determination to give it all that she had. The way caring for her consumed so much of what I had to offer. The way it wasn't enough. And yet all I can do is give what I can. Hopefully it will make a difference to someone, somewhere...