Thanksgiving and more...

I'll be called for "cuddle time" with Kali here before too long but many thoughts have been brewing. We arrived home late last night after spending Thanksgiving with Jason's family (see http://picasaweb.google.com/bennerj8/ThanksgivingWeekend#) and a brief stop over in my parents' area for a funeral Saturday and a short visit with my sister and family. It felt so good to come up Fruit Farm Lane and crawl under the covers in our bed; the covers were much appreciated since it was about 54 degrees in the house!!

It's been a rainy day and the woodstove has felt good all day. I stayed home from church again this week to unpack and straighten the house (to get ready for Christmas decorating which Kali was very enthusiastic about doing), take it easy to try to continue to nurse my body back to health from a cough that seems to be more of a nuisance now than a week ago, and to be alone with my emotions.

There were so many wonderful things about our time in PA with family. I think I just underestimated the emotional energy this first major holiday season without Nora would require of me. I guess the hospice newsletter we received in the mail full of tips for surviving the holidays should have been the first clue. It's a combination of family times that feel incomplete without her presence and the fact that this holiday season is so full of memories of the ways we celebrated differently last year.

We got down our one box of various ornaments and Christmas decorations. Kali pored through it like it was presents! I caught my breath just a bit when one of the first ornaments she pulled out was one she had made for Nora last year at a make it yourself pottery place in town. Her aunt Karen and aunt Sue had taken here there on an special outing and she had made two with Nora's name and two with hers. It made me sad and thankful; the reminders are so good for us to have. As we went through the box, I remembered how my parents joined us and helped us decorate our own home. Before last year I never took the time or made the effort to decorate our house for Christmas. Kali was too young to really appreciate it and we traveled for all of the holidays so why bother? Last year I didn't necessarily always feel like or have the energy for a lot of celebrating but many helped us create special memories that I now cherish. And those memories are not just flooding back for me - Kali clearly is remembering the fun and excitement that come with this holiday season and her enthusiasm is contagious!

Kali also seemed really glad to be home. I continue to wonder how to best help her navigate the world of large social gatherings when I'm seldom comfortable with them myself. I'm so glad she has school and that setting to negotiate relationships with other children and adults (without me there to fret and analyze!). I tend to do my share of fretting and analyzing at family gatherings... In some ways it made this year no different than many past, but there was the new layer of complexity as I figured out how to bring Nora's presence and the memories of her life into that space.

I have noticed in myself that there are times and places where I can do that in a very personal and sometime internal way. Sometimes I light a small candle in our home before company come if it is a night I just need a tangible reminder of her presence. Today I wore an orange "prayer shawl" scarf made for our family. I steal away and look at pictures for a bit. On other occasions I feel such a strong need (maybe a desire that feels like a need) to have her acknowledged to the community of people I'm with in a more public way. I told Jason that I imagine, and hope, that as time goes along it will be easier for me to rely on the personal and internal and find less need for the other. It seems likely that will happen some naturally with time.

For now, it's a messy mix of the two and I feel badly for those trying to so gently walk with me on this journey. The reality is that no one has ever "gone wrong" by talking with me about Nora. And even in PA this time, some family expressed being worried about Jason and I being okay emotionally if we shared with the extended family about Nora. For me talking about it always helps. It almost surprises me sometimes how helpful it can be. Somehow it makes the space feel safer to me. It makes it more possible for me to then enjoy and be more present to what is happening around me.

I thought a lot about Kali this trip and about siblings. There were three sets of twin cousins and then Kali. At one point a bunch of the children were on a water bed getting "rides" in the waves and there were talking about how many girls were on the bed, how many boys and then how many twins. I don't think it phased Kali but for me it highlighted something that is so often on my mind. Kali continues to talk about a future little brother or sister. The other week when I threatened to give away a pair of jeans that she insisted she "hated," she was crying as she told me we needed to save them for her little brother or sister to wear. Sometimes I just don't know what to say.

I realize we haven't even reported much on the autopsy results we received and that is mostly because there wasn't necessarily a lot of information that directly pertains to our journey at this stage. Probably the biggest thing I think about is how we go about processing any decisions to be made about the future make up of our little family. We live with the knowledge that some day down the roads (years, most likely) there may be a test for Petty Syndrome that would be available to test Jason and I for a recessive gene. Until that time all we know is that there is either a 25% chance that any future child would have some degree of Petty Syndrome (about which there is still much to learn) or a negligible chance (a spontaneous mutation that it just as likely to happen to any one else on the globe as it would be to repeat in our family).

And then of course processing those two possibilities and my reactions to each raises all sorts of emotions and questions until I finally have to consciously set it aside, telling myself that we have no need to make any decisions right now and that we can take as much time as we need. It is just hard to on the one hand feel so very grateful that Nora is part of our family and to find myself physically aching in some moments to have her physical presence back in my arms and then to struggle to know if Jason and I would knowingly choose to have another child if there is a 1 in 4 chance that that child would have a similar condition (possibly less severe or more severe) to Nora's. Fretting and analyzing again...

That was a diversion to something I wanted to share about our trip. The last morning before we left, most of the family went to a "rock shop." Jason's mom had wanted to gift each of the Benner girls/women (in-laws like me included) with a piece of jewelry with Nora's birthstone in it as a tangible reminder of her. It just so happens that there are two options of stones for Nora's birth month: opal and tourmaline. And it just so happens that both come in a whole array of colors!

I really don't like many options when shopping. I'm baffled by the choices. I wanted to find something that had meaning and maybe more importantly that I would actually wear. I'm just not a big jewelry person. On the way to the shop, I even asked Jason if he would be okay if I would stop wearing my engagement ring and replace it with a ring with Nora's birthstone (so that I didn't increase the number of pieces of jewelry I wear from 2 - my wedding ring and one other).

As it turned out, I had a wonderful moment of inspiration :) The woman helping us by showing the many options seemed to question how inspired I was, but in the end I think she could tell that it was exactly what I needed. It just happened that a couple years ago one of the four VERY tiny diamonds that surround the sapphire (Jason and I's birthstone) on my ring fell out. I never had any need to replace it - you really could hardly see the diamond and therefore could hardly see the hole.

It is so special to look down at my hand now and see my lone wedding ring, knowing that when my engagement ring rejoins it, that missing hole (the fourth stone) will be replaced with a tiny blue tourmaline. I'll know it is there and that is all that matters!

Kali has issued the call for cuddling so I better wrap this up. I just have to note here for the record that Kali won two of our three games of Sequence tonight. She is proving to be very much like me, if not much better, when it comes to an affinity for game playing. And she is really cute when playing too. She jabbers on and on about her strategy, but the crazy thing is that she will seem to be not paying any attention to what she is doing and then in the end she wins! The final game we played tonight made it quite clear to both Jason and I, when we were not laughing too hard to notice, that she does in fact have a really good grasp on exactly what is going on. Fun!

Jason's note: I thought I had the game wrapped up, when I played my one-eyed Jack to clear the way for my Ace of Hearts to complete a sequence of 5. Janelle didn't have anything to block me, but she asked Kali whether she could do it (not pointing out to her where she would need to go or offering any other clues). Kali responded with a hearty and gleeful "YES, I CAN!"(Obama should be proud), whereupon she pulled from her hand with a flourish the OTHER Ace of Hearts and plopped her chip down! I nearly fell off my chair with a laugh that was half joy, half astonishment, and all pride! What a kid.

Reflecting back, celebrating now

Today has been another pensive day for me in many ways. It has also been one of those days that brings a whole host of various feelings. One year ago today we brought our little 4lb bundle, Nora, home from the hospital for the first time just a few days after Thanksgiving.

I well remember entering our home to find it warmed by our woodstove that our neighbor Samuel had fired up for us. And soon Margaret and Charles both came to welcome us home. I was so relieved to be home, so overwhelmed and so uncertain about what the coming hours and days would bring.

But as we approach Thanksgiving this year, we could find many things to be so full of gratitude for. At the very top of that is our many neighbors, friends and family that have supported us in immeasurable ways.

Today we got in the car and traveled north once again just as we did a year ago. This time from our home in Keezletown to Jason's parents' home in Pennsylvania. This time with Kali, but not with Nora. We haven't made it to Benner's for Thanksgiving for several years now. One of Jason's sisters reminded me today that one of the first things we said when sharing that we were expecting our second child was to let the family know that we would sadly miss the Thanksgiving festivities. We feel grateful to be surrounded with family this year. We feel loved and cared about.

I am grateful to have a few days away that will hopefully carry with it some time for reflection, some time for thinking about and missing Nora. Jason recently said to me that he has been "missing missing Nora." It may sound odd but it resonated with me. I'm uncomfortable with a lot of busyness and noise. I'm sad when all my emotional and mental space gets crowded with other things. I'm restless and easily annoyed with myself and others when I don't have outlets for sharing my thoughts and feelings about Nora. I still love talking about her. I need time to miss her.

Sometimes there are days that fly by, when I haven't carved out time to check in on my inner process, that our experience with Nora is brought to me in unexpected ways. This week I had one of those strange mail days like we do every once in awhile - the kind where I open the mail and have this odd sensation that maybe the mail got to the wrong house: Jason and I receiving all this mail from hospice for families who have lost a loved one or for bereaved parents??? And then on the same day as an invitation for a service next week in our area for families who have lost children I received a certificate of appreciation from Wake Med Mother's Milk Bank for the 2,051 ounces of "human milk" that I donated. Worlds away from the present, but so easy to access emotionally.

Present and Past

Recently I find myself in an odd space of living very much in the present and then for various reasons being flung emotionally back to a year ago. It started a number of weeks ago as the weather turned colder. I would head out to the car early in the mornings to go to work, my hair still wet from my shower, and I would have this sensation of walking to the car at Bill and Dottie's to head back in to the NICU and to Nora for the day. What amazes me is how in that moment I would feel anxiety rising in me, almost finding myself wondering how Nora's night had been. And then I'd be on my way to work for the day.

It was a year ago today that we transitioned to the "rooming in" suite in the NICU for several days before coming home to Keezletown with Nora for the first time on November 25th. Yesterday at work I was sorting through old files and had another series of flashbacks. I was reading through a number of emails that I wrote from the waiting room outside of the NICU right around this time last year. I found myself sitting in my office scanning information I was writing about recruitment and scholarships for our graduate program, and once again felt the butterflies in my stomach, remembering that those moments were such a difficult balance of trying to live in two seemingly different worlds. It was almost as if I had to remind myself where I was. It seems likely that this is par for the course, this first year at least.

And tonight our home was filled with laughter, energy, little people and big people, and lots of powdered sugar (see http://picasaweb.google.com/bennerj8/ShalomSChildrenNight# for proof). We hosted any children (and some parents joined us too) from our church community who wanted to join us for an evening of fun. I found myself so grateful again for our home, our space that we are able to open to others. And somehow now it seems right that we didn't move into our front room until we arrived home from the NICU with Nora. I'm grateful that that space that we now spend a good portion of our waking hours at home in is also the place in our home that houses the most "Nora memories."

New birth and a birthday!

There are times in life when words abound and times when they don't. It may be partially the let down after the intense weeks of preparation for and time at the UVA retreat and then sharing at Shalom. It also feels like a time in our lives when there are more "unbloggable" things than there have been at some points in the past. Whatever the reason, this will be a very short reflection! Life is full - of really beautiful things and really painful things. We've been soaking up some wonderful times with close friends the past four days and the two links below capture it better than many words could.

After viewing the first, my Dad suggested that next time I should try to take a few more pictures of the baby. Make your own judgment :) I was blessed with the little guy's first real, non-gas or reflex related smile. I enjoyed thoroughly buzzing around cooking, playing with the kids and filling any available cracks of time catching up with our friends, but there is no way around admitting that soaking up a little 8lb bundle was near the top of the list. Jason commented at one point that there is nothing that slows me down like a baby.

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

We arrived home from our trip last evening - just in time for a few last minute preparations for a very special "phirst" birthday today of our special little friend!! Phoebe turned one today and we hosted a little party here this evening. It was special for many, many reasons. I lit a candle to be my reminder of Nora's presence with us. I often feel both the ache of her absence and simultaneously closer to her when I'm with Phoebe. Both feelings are welcome.

http://picasaweb.google.com/bennerj8/PhoebeSBirthdayNov17#

Paradoxes of Letting Go

Yesterday we shared the reflections below with Shalom, the faith community which has walked with us over the past year. The following disclaimer was included in the bulletin: We would like for you to be aware that, due to time-length constraints, we have had to seriously narrow and simplify the focus of our reflections. This has caused what we are presenting today to be a grossly inadequate, though technically not inaccurate, representation of our family’s complicated, imperfect, and beautiful journey with our beloved Nora. In the second hour discussion time, we hope our responses to your questions will allow you a fuller picture of the experience. We also want you to know that we love talking about Nora, and would be pleased to answer questions and hear your insights and reflections at any time.

Paradoxes of Letting Go

Introduction

(Janelle) In March of last year Jason and I were happy to find that we were expecting our second child. In September we learned that the baby was not growing well in utero and the pregnancy was categorized as “high risk” subjecting the baby and me to frequent monitoring at Shenandoah Women’s Healthcare and at UVA Medical Center and our family to a roller coaster ride of waiting, wondering, hoping and fearing. I spent the last six weeks of pregnancy on bed rest until labor was induced at full term at UVA. Our second daughter was born at 1:30am on October 30, weighing about 3 ½ lbs. The next 7 months of our family’s life until she died cannot be characterized easily. Her tiny body was a mystery to the medical community and her entrance into our family’s life disrupted any previous illusion of equilibrium. Not knowing what we were going to face, we had no choice but to immerse ourselves into her care and do our best. This morning we will be telling a portion of our family’s story by weaving together quotations from the many pages of writing we did from the time we learned we were pregnant until after our baby’s death. Each of us will be reading in our own voice, starting with the date of the reflection from which the quote originated. Occasionally we will be inserting short summaries of a time period that was not succinctly described in our writings. We have selected various pictures to accompany, in no particular order, our reflections. We hope that our sharing will give a glimpse into our journey, balancing the pain and difficulty in letting go with the gifts to be found in the process.

Pregnancy

(Jason) April 30: We’re expecting our second child, to be born somewhere around midnight on the 18^th of November. We’re terribly excited and it feels like the right time in our life for this.

June 19: It will be cold and inhospitable outside for the first few months of the baby’s life, but we hope it will be a sort of springtime for our family. I wrote a poem the other day that I will share with you:

Circle

Those many pairs of eyes
those hands
those smiling lips
are all for
you.

Are you chilled? Find here warm arms.
Have you thirst? Among us you will find a breast.
Your skin needs touch, your mind must feel
us notice
you.

We are here. We were waiting. You are
no burden. You are
a fire for us to stand around; we make
a place for
you.

(Janelle) July 28: For those of you that haven’t gotten the most recent update – we learned about 3 weeks ago that Kali will be joined by a little sister. All seems to be going well. She is on the tiny side right now but my uterus size is right on track and they aren’t concerned about her growth.

(Jason) In late August we had a follow up ultrasound to check on a minor problem in one of her kidneys. While that had improved they became immediately concerned with her growth, her size having fallen below the 10^th percentile. We began going in to be monitored two times a week and Janelle was encouraged to significantly reduce her activity level. In early September the ultrasonagrapher was alarmed at several things she noted on the baby’s brain and set up a consult at UVA. By mid-September Janelle was officially on bed rest, the baby’s size was now below the 3^rd percentile and we were being followed by UVA as well. This uncertainty continued until the end of the pregnancy.

(Janelle) October 8: Once again we packed the car as if we would not return home until after the baby was born. Kali went to play at our neighbors’ home and we said goodbye. It was a hard parting for me and I think even Kali was starting to wonder what was going on. We were all getting tired of the continual preparation for the big event, only to be sent home to keep waiting, monitoring movement and wondering what will happen next.

Birth

(Jason) October 31: For me, the labor and delivery were an awe-inspiring experience. To be so closely involved in such a monumental process with someone who did it so well was truly beautiful, and a memory I will always cherish, no matter what comes our way.

Trying to project [our baby’s] future seems to be a prospect about as murky as trying to assess her well-being in the womb has been. [The geneticist] could give us no diagnosis and felt her series of [unusual] traits did not call to mind any familiar pattern. Unfortunately the best case scenario is probably that the experts keep ruling things out until there’s nothing left to rule out, and we are simply left wondering and working with the hand she has been dealt.

This morning when I came back from [our baby’s] bedside to Janelle’s room and had some time to myself, I shed some tears, fearing that the decline in oxygenation meant she was beginning to slip away from us. That indicated to me that I am bonding with this child. Perhaps that is part of why we have felt moved to go ahead and choose a name for her. We are calling her Nora Lynne. Nora means “light” and Lynne (besides being her Aunt Karen’s middle name) means “a cascade, or the pool into which a cascade falls.” We have liked this combination of names for a while, but felt hesitant to choose such cheery imagery when the process seemed so fraught. Now that she’s here, it seems right to choose images of clarity, warmth, energy, and refreshment as statements of hope for her life.

Watching her growth

(Janelle) November 14: I am quite convinced I would not be making it at all without Jason’s steady and optimistic presence and Kali’s hugs and kisses. It is hard to face feeling every day that I’m not able to mother either of my children the way I would like to. I feel uprooted and without control over so much.

November 21: What an odd feeling! We have our baby all to ourselves! Nora was just wheeled from her little cubicle in Pod D of the NICU to the “rooming in” suite where Jason and I will be staying with her tonight. It seems that in the coming days, weeks and months, Jason and I will be faced with a lot of questions about how far to go down the road of testing and attempting to put the “Nora puzzle” together. At this point in our journey, I feel the need to focus my attention on learning how to mother her. For right now that means working on feeding, holding and loving her. That might mean something really different down the road.

(Jason) November 24: There is something about Nora’s genetic makeup that causes her body to differ from the average. However, it looks like time is on our side, because whatever it is, it is so far not keeping her from thriving in her own way, at least for now. There are even a growing number of moments these days where I find myself enjoying having a new baby and delighting in her little features and expressions (especially that drugged look babies get when they have a belly full of milk).

(Janelle) Also November 24: Tomorrow will no doubt feel like a day we have waited for for a long time. It will be just under 4 weeks since we left home to come to UVA. While we are so eager to start establishing our routines and rhythms at home, there are also feelings of anxiety as we anticipate this big change.

December 3: The week has been full of ups and downs for Jason, Kali and I, but Nora has seemed more or less not bothered by it. She has been doing what all babies are supposed to do: eating, sleeping and filling her diaper.

(Jason) December 10: Her pediatrician told us today to be prepared for the whole range of possibilities, from a radiantly normal outcome to extremely impaired. If we look at the whole situation at once it is easy for perfectionists and problem solvers like us to become overwhelmed. But if we can manage to live attentively in each moment and yet hold each moment loosely, things feel differently. A meaningful thought for Janelle and I has been that life is a continuum, but made up, fundamentally, of a series of snapshots. Some of our snapshots recently have been grim. But there have been some really beautiful ones too.

Smiles and Coos

(Janelle) December 28: Since the last appointment, [Nora] has started doing two things that help on a number of fronts: smiling and cooing. It is encouraging for us because it is developmentally appropriate for this stage. It also is quite endearing!

This holiday season has been one of shifting expectations and making new memories. When I focus on what I dreamed of months ago when I thought ahead to Christmas with a new baby it can feel disappointing. But if I can take it for what is has been, we have been overwhelmed with gifts – tangible and intangible. Never have I come to the end of a year with a keener sense of being surrounded and supported by a huge web of people.

January 8: Some days it would be so easy to just think we have a baby, a healthy tiny baby. She is not on any medication. She has not needed any additional doctor appointments for anything since we brought her home (other than her weight checks). She is feeding by mouth and getting better at it and wanting to do it more often. She lets us know when she needs something. She is smiling at us and the ceiling fans and her red stripe on the cloth by the changing table. She’s even growing out of some of her preemie clothes.

Bonding

January 15: This past week I had an afternoon where Kali and Jason went and did errands. It was the first time that I had a significant block of time with just Nora. I found myself listening to music, looking out our big pictures windows at the mountain, and feeling so many things that I was unable to verbalize. Tears came, but they weren’t exactly sad tears or happy tears. I think they carried some weariness, some hope and some fear in them. As I walked back and forth in the front room with Nora in my arms, I realized that I was starting to also feel love. So many people have encouraged me to give myself time and grace regarding my journey of bonding with Nora. So many looking in on our experiences of the past number of months have affirmed Jason and me as parents. Yet inside I’ve often felt and still feel inadequate and unprepared for the journey ahead.

Growth Slows

February 15: It was about a month ago since Nora was weighed at Harrisonburg Pediatrics so we were hoping she might have reached the 7 lb milestone. You can probably imagine our horror when she weighed in at 6lb 7oz. Only a four ounce gain in a whole month!

(Jason) March 11: [The geneticist] thinks that he has found a known genetic category for Nora’s condition. As was suspected, her presumed category is not at all populous, with the total number of reported cases being in the single digits. We have no idea what the implications of this are, but I’ll say that it should not be assumed that because her condition is extremely rare that it will be extremely grave.

March 18: Because of Nora’s continued lack of growth, starting tomorrow she will be going to work with Janelle so she can nurse directly from the breast instead of needing to undergo the stressful hassle of trying to suck [milk] out of a lukewarm, rubber contraption that doesn’t fool her for a minute.

(Janelle) April 19: I’ve had Nora with me pretty much 24/7 for the last month and I have reached a new level of exhaustion. Trying to balance a job that I care deeply about and a family that I care deeply about, I feel torn in ways that at times feel almost unbearable. For the most part, though, [Nora] seems to have adjusted well to my office. She even has her favorite bulletin board that she coos at consistently.

Feeding tube

(Jason) April 21: Nora is scheduled for surgery to implant [a feeding] tube in about 2 weeks. There is a certain comfort in knowing the next step. It’s too early to know whether or not the uncertainty we’ve been living through will be alleviated in the time following the surgery.

(Janelle) May 4: Today is a milestone day for Nora (still teetering under 6.5 pounds). She ROLLED OVER! She’s been working on it the last number of days. We were proud of her!

(Jason) The next quotation was written as Nora was recovering from the previous day’s feeding tube placement surgery.

(Janelle) May 9: I had almost forgotten how my stomach churns with the sound of beeping machines. They continue to monitor her blood oxygenation levels. They keep telling us that needing a little oxygen after being under anesthesia is normal. It just doesn’t feel normal.

Pulmonary Hypertension and Oxygen

May 12: This time I’m sending my Dad’s update around because I don’t have the time or words to write. Kali needs to get to bed. Nora needs to get fed. We are tired beyond words. At this point home seems like a distant dream.

(Jason) Janelle’s Dad had written: “Nora's condition has changed today. Her oxygen levels have declined so that she is on oxygen all the time. Her cardiac ultrasound shows that she has pulmonary hypertension. Tomorrow she is to have a cardiac catheterization to better define the situation and potentials for treatment.”

(Janelle) May 13: It still feels like a bit of a nightmare that I would love to wake up from. When I look at Nora laying on her bed hooked up to oxygen, monitors, and an IV, it is hard to believe she is the same little one that carted around with me for 2 months [at] work, free of all those contraptions and relatively content and happy. But this is where this unpredictable journey has led us.

May 25: I’m writing this on the morning after one of our worst nights yet since arriving home from UVA last Saturday afternoon. It continues to baffle my mind and cause my heart to ache that the procedure that had been recommended to bring our family relief is creating anything but. Since we have come home, it has been a whirlwind of learning: trying to figure out maneuvering around the house with the oxygen tubing, watching Nora and trying to constantly trouble shoot what is causing her discomfort and what feeding regimen will work for her.

I find myself having a hard time not asking some big and difficult questions – about Nora’s care, about our highly advanced medical technology, about quality of life versus quantity of life, about what it means to love these little persons entrusted into our care, about good stewardship and use of resources…

[Life] has felt very stressful this week and [Kali] has responded to that clearly. One night in an all out screaming melt-down she told Jason that we would never be okay again and then later on asked Jason if he was glad that we have Nora. She has also admitted that she thought the nurses were going to take off the cords before sending Nora home. All we can tell her is “so did we” and to try to explain that we are going to be okay, even when Jason and I wonder ourselves.

Airlift and PICU

May 27: It has been a nightmare of an afternoon. In the last few days we have noted signs of more respiratory distress [in Nora]. She is probably arriving at UVA soon by helicopter. When will this end? I wish I knew what relief looks like for her. I wish I knew what mercy meant in this situation. I wish I knew how to mother her. We really have no idea what is ahead. I’m struggling to think enough to pack, clear our week’s schedule, close up the house, and know what to say to [Kali].

May 28: Last night two doctors in the Pediatric Intensive Care Unit spent over an hour talking with us. It was helpful for me to finally have a place to say some of the things that have been welling up in me; to express the desire for Nora to receive [medical] care but to keep her comfort a top priority.

I think I have shifted into “self-preservation mode.” I’m scared to hope again. I’m just not sure my emotions can tolerate too many more waves of the magnitude we have ridden in the last day or two. And there is something so strong in me crying out for some kind of relief for Nora. I just long for the freedom to pick her up and walk her and cuddle her without wires that tug and pull and frustrate her. Transferring her from bed to arms and back is no small task.

But Nora makes us smile too. She is insistent right now on figuring out books. She gets frustrated if you help her and really wants to look at them herself. [Also] we need a big sign on her crib that says “baby LOVES pacifier, will NOT suck.” I came in one time to find a nurse trying to calm Nora by trying to stuff her pacifier in her mouth and Nora quite frustrated at her. I had to explain that our baby fiddles with her pacifier, inspects it from all angles and chews on various parts, but she does not suck it.

Letting go of Nora

(Jason) June 1: Nora’s care regime has recently changed in subtle but significant ways in response to her not turning the corner towards health as quickly as the doctors had hoped. She is now on a program of energy conservation aimed at building up her reserves of strength. This is assumed to be a strategy to get her “over the hump.” To our surprise, Nora has responded to this care regime by taking to it very well.

This is evidence that this is just what she needs right now, and it probably will give her the best chance to find her path out of the woods. But for Janelle and I this is also a letting go. Our baby now needs rest and quiet more than she needs to be cuddled and held. Over the past hours Nora’s craving for breastfeeding has noticeably diminished. Janelle and I sense a fork in the road coming up.

The options for what might be wrong with Nora are getting few, as are the solutions. We are rapidly reaching the end of the medical community’s list of ideas.

I feel in some ways that Nora is withdrawing, and feels grateful to do so. I am not saying that I think she is going to die now, although with each passing day I have to admit that seems more possible to me. It does feel that Janelle and I are needing to release her, or at least let go of some of the ways of caring for her that are so familiar to us, and that is frightening, because we don’t know if we’ll ever get her back. Some might say that we are releasing her into God’s hands, some might say into the hands of the medical powers that be. But I feel that we are releasing her to herself.

I may need to hold her lightly, but I am still her father, and I have a job to do. She needs me to be there to look after her comfort. She needs me to defend for her a territory in which she can work out her healing, or can peacefully and calmly let go of the need for healing. Many people have admonished us to take care of ourselves. Being at Nora’s side is the best thing I can do for myself. This is exactly what I need, because it’s exactly what she needs. Seeing her work for her health is an inspiration to me…I realize how much she has to teach me. Also, there is the very real possibility that these are the last days we will have with Nora. I don’t want to give up any of my minutes with her.

It would be dishonest to say we never feel self-pity or feel a little ganged up on by the universe. But mostly I understand that nobody did this to us. I understand that nature’s strength lies in its ability to accommodate imperfection, even thrive on it. Nora’s body is a graphic depiction of the downside to this strategy. As humans, we naturally reject letting nature have its way with our loved ones, but there are limits to our ability to hold back the tide. My challenge is to immerse myself in this human endeavor without being consumed by it. To be open to what it has to teach me about life and love. Nora’s life may be as long as yours or mine, or it may be over soon. Our job is to provide for it to be a good life, well lived, no matter what.

(Janelle) On June 2 we had a meeting with most of the specialists involved in Nora's care. They felt there was little else to do. Nora was placed on comfort care. She continued on oxygen along with pain medication and seemed fairly comfortable

June 2: I’m not sure I have the energy to put in writing all that is swirling in me. What I do know is that this tiny person has made a big imprint on our hearts. My journey from the beginning with Nora has been one of many emotions for me, sometimes emotions I struggled to understand. And now as I face losing her, I am scared. How do I help sustain her in dying just as we have worked to sustain her in living? And how do we journey on as a family? Since the day Nora was born, I have struggled with wishing many times that we had never gotten pregnant. And I’ve struggled with guilt for feeling that way. How could I wish someone away that I helped to bring into this world? Was I not comfortable with a child who would look different, who would need special care, who would change my life in ways I felt I hadn’t bargained for? I would find myself yearning (selfishly, it felt) for our pre-Nora days when I had choices and freedoms that I felt were stripped from me because of her needs. I felt bitter at times for the way that Nora’s presence zapped me of any extra energy for Kali. But we will never get back our “pre-Nora” days. And I’m glad, as much as I’m heartbroken. And I hope that Nora’s life has had enough precious moments in it to make it worth it to her too. I wish she would be able to understand that her little body was anything but weak, that her personality shone through the struggle, that she taught me so much in such a short time and that she will be missed more than I can begin to comprehend.

(Jason) June 4: Dear loved ones, She’s free. Her last gift to us was that she did not linger when it was time to go. We do not feel that she was in any way suffering. She stopped breathing while resting in Janelle’s arms with all of the tubes, probes, and monitors removed. Soon after she passed around 4:15 a.m., a beautiful, swift thunderstorm swept over Charlottesville, with brilliant flashes of light. My comment to Janelle was, “the atmosphere just doesn’t know what to do with a spirit as big as Nora’s.” This has been the hardest moment of our lives. It has also been, along with the births of our two children, one of the most awesomely beautiful. Nora died the way she lived: courageously.

(Janelle) June 14: Some days it is hard for me to believe that it hasn’t even been 2 weeks since we were at Nora’s bedside caring for her around the clock. If it weren’t for the flowers, the photos, baby things sprinkled throughout the house, the milk starting to flow from my breasts when thinking about her, and the emptiness we all feel inside at times, it could feel as if the 10 months we just lived through was a blip on the screen of our life’s journey – here and gone again.

(Jason) Also June 14: What seems to help the most when I really miss her is to remember what it was like to hold her or rub her head, how she loved gentle and close human contact, and to remember her interest in the world around her. Then some of the meaning that she contributed to my life is borne forward into the present, lodges in my chest and stays with me for a while.

Nora had probably been working against her cardiopulmonary symptoms from day one. She knew no other way of existence, and was too innocent to feel the unfairness of it, so she simply picked up and began the work of development and settling in to her family with whatever energy she could spare. Life was full of wonder and adventure for her, as it is for every baby. She is my example of how I wish to live my life. I hope when my time comes to die that I am found to be still learning my place in the universe with wide-eyed wonder.

(Janelle) June 15: I think about the night of her death numerous times each day. Sometimes the feelings that come along with it are ones of gratefulness. We had medical professionals who were kind, compassionate, available but not intrusive, [who] seemed to recognize on some level that we were journeying through a sacred time and they were there to help the space to stay sacred.

We did our best to savor our time with her. Jason and I talked to her and we talked to each other. We told Nora how brave she was and that she could do it. We told her that she didn’t need to hold on anymore for us. We told her that we loved her, that Kali loved her and that so many other people loved her too. All the while she held onto her binky and fiddled with it, as she had done for many days. We felt her little head, the yet unformed bones and the precious tufts of hair that swirled this way and that. It was hard to believe that she was slipping away from us.

The final time her nurse came in she told us that [Nora’s] blood oxygenation levels were in the teens. We knew that her heart could not work hard enough to keep her body going much longer. We removed the monitors that had for days been our indication of her well-being, or lack thereof. And finally we removed the oxygen. I wanted to hold her with nothing attached to her little body. I wanted her to know that we were not abandoning her. I wanted her to be as she was the first time I held her – just Nora. Nora in all her mystery, in all her complexity, with all her challenges, and with all her beauty. There in that room on 7 West of the same hospital in which she was born sobs wracked my body.

[moment of silence]

Had the storm been raging and we had not noticed it or had it just begun? The mountains around us were lighting up and the rain coming down in torrents. Jason and I held each other and looked out at the storm. I had an emotional response to being away from Nora’s body. Was I abandoning her? Where was she? Maybe I was closer to her as I looked out at the storm, at the sky, the mountains, the rain and the lightning.

(Jason) August 8

Through the Valley

Our trail led down into the gorge.
We harbored fear, but had no choice;
love’s rod was always there to prod us on.

Step by worried step,
we carried you for miles, always hoping
for the path to strike an upward tack
and lead us through and out; we wandered there
so very long.

In meadows green we laid us down and, choking, drank the
brimming chalice of our sorrow by the cool and quiet river’s bank,
for it was there we learned we could not take you with us any further, nor
could we remain.

Kneeling at the water’s edge, the best that we could do
for you was weave a basket, lay you in, and send
you on your way. You couldn’t know we didn’t leave, but watched
that basket float until it passed the bend, would be there
still if love had not reached
out to nudge us with
a gentle staff.

* * * * * * * * *

This path is leading out and through, but without you:
Oh, empty arms! Looking back toward where we’ve been I feel
the pain and smell the smoke of hopes becoming ashes, yet I know
that this is right: these labored steps, my aching hips, love’s
leading toward the light. And there is this: at night
I dream of palaces that lie beyond the bend; I see
some bathing goddess reaching out to
lift you from the rushes.

September 5: If parenting teaches us nothing else, it seems it ought to be that to love another person well means to let go of the need to control all our circumstances. While we were in the thick of decision-making and intense care provision for Nora, it was so abundantly clear that we could not control what was going on. It was a kind of freedom I hadn’t known before: there was nothing we could do to change the facts, so we allowed the waves to wash over us, finding they washed away many of the things we usually busied our minds with.

I would never, ever wish that we could experience the death of our child once or ever again. It was a precious and beautiful time that I would wish on no one. But I could wish that it would be a little easier to live the gifts that that time presented to us. Part of the problem is that those things which are washed away in the immediacy of an unfolding loss or tragedy are often things which are quite useful in ordinary life. One of the gifts Nora leaves with us is the memory we have of those moments when we had to let go. It is a memory of what it feels like to be free to love with all my heart. It is an antidote to the seductions of ordinary life.

[Recently] I mentioned to Janelle what a lucky person I feel I am. She said, "A lot of people looking in at this point in your life might not think that." I can't adequately express the deep and abiding sense of goodness I feel permeates our lives, and which permeated Nora's life and death. Perhaps I will someday recognize this same goodness in every person, even every living thing. It has taken knowing Nora to clarify it in my mind thus far; what upcoming encounters with the essential will be the touchstones that broaden [our] perceptions?

Post Election Blues?

I don’t know much about (capital G) Grief. That is to say that my knowledge about the process of grieving comes from little nuggets I was able to pick up along the way, and now our family experience with it. And what I can say so far about it from this perspective is that it is one unpredictable process. It seems to have some things in common with onions (aside from making you cry), in that it is made up of layers.

At least that’s what the past few days have impressed upon me. Maybe it was the passage of time, maybe it was natural consequences of having spent two consecutive weekends thinking and feeling intensely about Nora (the IPPC retreat, then some time set aside for Janelle and I to prepare a presentation for our congregation).

On election night, Janelle and I had been anxiously checking the CNN website (we have no T.V.) for results, but needed to head to bed before anything was decided. Kali had demonstrated some pretty clear anxiety during the evening herself, getting kind of hysterical about things, and even trembling at one point. We decided it might be a good night to honor a request to join us in our bed for the night, finding ourselves concerned and perplexed. We did our best to reassure her that we were there for her, even letting her know (again) that she could always tell us whatever she was thinking, even if it scared her. We promised that we wouldn’t get angry with her for thinking things, no matter what they were. After stories were read and Janelle had more or less drifted off, Kali got into some kind of mental space where she was letting down her usual veil of privacy…by asking questions and casually conversing, she allowed me to know some of the things that were on her mind. It became clear to me that she is working very hard to make sense of her world, with two stand-out priorities: understanding politics and understanding what happened with Nora.

It was actually kind of cute to field her probing questions about the candidates: “If Barack Obama and John McCain both wanted to buy the same stuffed animal, what would Barack Obama do and what would John McCain do?” Essentially, all of her political questions centered around this theme, with variations including them wanting the same cantaloupe or other treasured object (say, a JOB for example). This seemed to be a rather straightforward case of the child absorbing and taking quite seriously the adults’ anxieties, and trying to make sense of them. I tried not to bias her TOO much with my answers, and also tried to make sure she knew that both of them would probably do a very nice job of sharing their stuffed animals or cantaloupe in person…it’s their larger-scale ideas that set them apart from each other. I have purposely refrained from including our particular political preference in this paragraph, since that would distract from the precious innocent struggle to comprehend that I wished to share with you. Maybe I’ll deliver those goods at the end of the entry if I still have the energy at that time.

In a different part of that long and rambling conversation, it became apparent to me that it has crossed Kali’s mind that Nora would be a candidate for becoming a ghost, if such a thing were possible. I think it was some kind of conversation about people scaring each other, and she mentioned that, if Nora became a ghost, then she would maybe do such and such a thing. That got my attention! How can a parents’ heart not just ache with longing for different circumstances when their child says such a thing? Remaining calm, I tried to continue engaging the conversation to her satisfaction, and then put the question to her as to whether she thinks about Nora becoming a ghost sometimes. Yes. Does it seem like that would be scary? Yes. Do you think that Halloween helped you think about that? Yes. Do you think that’s something that really happens? [Something like] Not really, but it seems scary to think about, because ghosts seem to scare people a lot. We then talked a little about how Nora was our sister and daughter and loved us, and we loved her, and even if it were possible for people to become ghosts, don’t you think she would want to do good things for us, making us feel good and helping us rather than scaring us? By that time she had either lost concentration on the topic or something, because I remember feeling that I hadn’t exactly convinced her. Probably she just wanted to get back to politics.

In the intervening time the election has been settled, so that anxiety has been laid down. Now, it seems, Kali and her dad can focus on trying to come to terms with the loss of Nora in this particular layer of the grief onion. I won’t speak for Janelle, since we’ve had such little time to speak recently that that would be a more fruitless task than it usually is for anybody to speak for anyone else. I’ll share a snapshot from our afternoon: we were playing Boggle (Kali’s way), and what follows is the list of words we spelled together with the boggle dice.

Nora
Rhea
Dust
Lose
Water

Hmm. Kali chose the first two and last one without input from me. Rhea was the other name we were considering for Nora, and has connotations of water flow. The second and third were the product of Kali choosing a letter she wanted to start the word with, while I supplied some possibilities for four-letter words beginning with that letter, with her making the final choice. I cannot possibly be expected to interpret these kinds of events, but they come up once in a while.

Sometimes Kali’s mind and memory startle me. The past two days, Kali has, each day, gotten a kick out of playing with our rather unconventional “old kitchen” patterned tile floor as a “magic concrete”, a magic carpet substitute (welcome to Kali’s fun and quirky humor). What set me back on my heels was when she was joined by an imaginary friend named “Nina”. Nina is the name of the deceased child of one of the other couples participating in the IPPC retreat. Kali must have gathered enough basic information about Nina from one or more sparse conversations she may have overheard since we’ve returned home to have incorporated her into her own process, whatever that may be. I wonder who Nina is in her mind. Whoever she is for Kali, some form of her memory has been with us for a portion of two different days, and is welcome here.

A quick disclaimer: I am not intending to spook anyone out, and do not believe that supernatural occurrences are accompanying our grief process. What I believe is that grief and crisis access portions of our minds that are usually not experienced so directly for most people. What emerges can surprise and unsettle us, for better or worse. I have found this layer of the onion to be somewhat disorienting. Yesterday when Janelle got home from work, she found me in a state of deep sadness (also having forgotten to put the lasagna in the oven, which I was going to do just as soon as I got off the phone with her 15 minutes prior). I felt in the grip of a mood that caught me by surprise and with my defenses in shambles. This is not all bad, but I do prefer to do my grieving on my own terms, which for me means lots of time working alone, interspersed with written reflections and supportive conversations. I haven’t had much of the alone work component recently, and I suppose yesterday afternoon’s state of mind was a notification of sorts that if I don’t allow the grieving process the space it needs, the natural consequence will be that it will have to find expression when and where it can, whether that is convenient or not. Of course, that particular mood may have had something to do with Kali and me listening to Full Table’s version of O Magnum Mysterium and Ubi Caritas while I brushed her bath-wet hair in the waning light and thought about the turns life has given her. Also, there is the election stress let-down.

Ah, yes, politics. Most of you may assume we favored the Obama ticket. That’s true, and something of an understatement. I actually felt strongly enough about it to spend Nora’s birthday canvassing in McGaheysville, with political volunteerism being completely new and uncomfortable to me. Why do we favor him so much? We think he’s vastly intelligent, calm and competent in crisis, honest, a critical thinker, warm and disarming to friend and foe, pragmatic, self-possessed, sincere, fair-minded, and justice-oriented in both domestic and foreign affairs. This was the first election I can think of that didn’t feel like an “evil of two lessers”. I actually wanted this guy to be in charge. Now having handed him the reins, we shall see what comes of it. He faces a huge challenge. Some points that are important to me now:

-it was an electoral landslide, but 52 to 47 is not exactly a popular mandate. I hope he can follow through on his promise to be everyone’s president, and listen especially to those with whom he disagrees (I am hopeful). If he can, we just might get somewhere.

-I agree with the author of “Obama’s Challenge,” an economist who appeared on NPR’s Fresh Air today: tackling the economy is first priority, and will require some very nimble thinking on everyone’s part, with Obama filling the role of Educator in Chief, much like Franklin Roosevelt in his time. Also, we’ll need to be prepared for some pretty counter-intuitive spending by the government to get things going. Of course the health care system is in crisis, so the spending plan may need to include some temporary measures such as (my idea) cash infusions into community hospital ER budgets to accommodate the hordes of uninsured who will be turning to the ER in increasing numbers. But tackling health care right away would be a huge stretch with the economy the way it is.

-the pressure will be on to live up to the American habit of international posturing. Can he stick to his principles and give the diplomatic and humanitarian route the full support it has never really gotten? Will the natural rewards of that approach bear fruit in time to validate the method in the mind of the voting public?

-perhaps my biggest concern can be summed up in five words: Power corrupts. What’s your plan?

Enough of that. My heart goes out to the vast numbers of people who are experiencing extreme psychic pain at the results of this election, and I feel anger about that suffering, because I feel the worst of it is being experienced by ordinary people as sincere as me, who have been receptive to the message of fear promulgated by many church and political leaders in the run-up to the election. Now that the unthinkable has happened to their beloved country, they may feel very, very lost. This was graphically illustrated for me by an encounter with a dear woman on the day I was canvassing. Her fear was palpable.

I have less sympathy for those who angrily chide the multitudes. Okay, so that sentence was just a set-up for sharing a quote from the [always Evangelically Correct] Kee’s Amoco sign as seen on Wednesday afternoon:

“That was not Biblical voting.”

Attempting to formulate a response to that sign quote leaves me feeling personally reduced, so I’ll let it stand and go to bed.

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.