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?