Janelle and Jason Myers-Benner

Janelle and Jason Myers-Benner were expecting their second daughter when concern over the baby’s size arose changing an otherwise normal pregnancy into a high-risk one. Several months of midwife and doctor visits were followed by delivery of Nora Lynne at 37 weeks, weighing just over 3 pounds. She spent four weeks in the neonatal intensive care unit before being discharged.

It was several months before doctors diagnosed her with a rare syndrome called Petty Syndrome. With this syndrome come various physical abnormalities most notably the inability to amass body fat, but mental and emotional development is usually more or less normal. Due to Nora’s tiny size, life was a constant stir of making sure she was eating enough and keeping milk down, a regular flurry of doctor appointments, and a surgery to place a feeding tube when weight gain and even maintenance became impossible. During that hospitalization she was diagnosed with pulmonary hypertension .

Nora died resting in her mother’s arms and with her father by her side at UVA hospital at about 7 months of age.

First, tell us about your blog and what it meant to you and your journey with Nora?

Janelle: The blog Cascades of Light was actually not created until after Nora died. When I went on bedrest around 28 weeks, we started sending regular updates to some family, friends and our church community. Over the weeks and months leading up to Nora’s birth and then her 7 months with us and eventually her death, the list slowly expanded to include many more people who felt connected to us or Nora in some way. And as time passed, Jason and I found that our email updates were in part to keep in touch with our community (since we were mostly at home other than doctor appointments), but also for our own processing and to stay in touch with each other. At the most difficult times when we were operating on a few hours of sleep each night and trying desperately to balance Kali and Nora’s needs as well as my work responsibilities, we often found that reading each other’s reflections was when we got “caught up” with each other. After Nora died, I wanted to compile all of those writings and put them somewhere where we could easily access them and to make them available to others that might find themselves in a similar situation. I created the blog and interspersed some pictures with the updates. We stopped sending regular emails to large numbers of persons and gave the blog address and started using that to house some of our reflections on the grief process. One of the reasons I’m most grateful to have all of our reflections compiled in one place with pictures is that I want it to be there as a resource for Kali as she grows up and needs to process her sister’s death in new ways.

Jason: The writing that we did during that time served multiple functions for me. It was important to both of us that the people we depend on for social support be kept informed of the particulars of our experience. Somehow just knowing that they knew helped to keep feelings of isolation from developing so strongly. Also, while so much was unclear about the terrain we found ourselves in, it was clear that those were momentous times; we wanted to record the facts and feelings for a time when we might be able to take more time to make sense of it. It reminds me a little of what Winston Churchill said of the Balkans: “The region produces more history than it can consume.”

As it turned out, the very act of attempting to keep track of what was going on was often helpful even at the time, in that my viewpoints often clarified and my feelings crystallized while I considered what to write. The word processor became helpful in processing more than words.

You experienced quite a roller coaster ride the last several months before Nora was born. How would you describe those initial emotional ups and downs during many doctor visits, as well as your fear of what the future could hold?

Janelle: Sometimes I feel embarrassed to think about those initial appointments and learning that something was not “normal” with our second child. When I think about what I initially worried about and where our journey led, some of my initial concerns seem so petty and unimportant. Everything had gone so almost magically smoothly with my pregnancy and birth of Kali. From the beginning with Nora, I had struggled emotionally. While we felt ready and that we wanted a second child, my process of bonding with this baby was not as smooth and care free as it had been with Kali. When we learned that Nora was not growing well, it seemed as if my world was falling apart. Things quickly became less and less clear – from initial concerns about the baby’s size, to suggesting that I slow down to give her the best chance at growth, to alarm over something unusual noted on her brain in an ultrasound, to full bed rest, to many possible but unclear diagnoses from UVA doctors, to needing to be induced at UVA. It felt like each time I adjusted to a new reality something would change. We also struggled so much with how to make decisions, starting to feel like while we had some control over the situation Nora was not just our baby but this mystery to the medical community. And there was no doubt that I, more than Jason, struggled with whether we had made the right decision to have a second child. For the first 4 years of Kali’s life she had not been separated from us very much. All of a sudden we had to arrange child care for her often, no longer taking her to prenatal appointments that at first had been a special family time, and also needing to ask for help much more than was comfortable for us. My bed rest was a time of intense personal struggle, as I could not keep moving to ward off the anxiety and fear and questions.

Jason: I am naturally an optimist most of the time, and I try not to spend time worrying. Without any definite answers, I think it was my general tendency to postpone my reaction until I knew for sure what it was we were dealing with. Two points from the pregnancy stand out in my mind as frightening and with high emotional impact: the moment I heard that the ultrasonographer had first noticed an irregularity, and the time of Nora’s birth, when we actually got to meet her in the flesh. In both of those instances things were still far from definite, but it was clear that we were headed for tough times. The rest of the pregnancy had its ups and downs, with plenty of false alarms, but generally they were more gradual and the medical professionals did a good job of communicating their uncertainties, which allowed me to deal with the disappointments and fears at a pace I could more or less handle, most of the time.

Janelle faced a more immediate emotional impact than I did, since the mysterious and frightening events were happening inside her own body, and she was the one who had to make adjustments to her routines and movements. I experienced her distress vicariously, to be sure, but looking back I can see I was reluctant to get too upset until I knew there was something to be upset about in the long term.

You had had high hopes for a natural birth, midwife delivery, and early familial bonding as you had experienced with Kali. Nora’s induced labor and weeks in NICU were filled with machines, tubes, and tests. How did you grieve the loss of these hopes during that time?

Janelle: Initially this was one of the things that was so painful for me. I felt very close to the midwives I had worked with and some of them were close friends (which I know made caring for me difficult at times). Coming to terms with an induction and having a birth in a large medical teaching establishment was really challenging. Most of those surrounding us encouraged us that this was best for Nora and that it was okay to let go of those dreams and even to be okay with the ways in which is now seemed we were unable to live out some of the values we held dear. Yet there were times too where we felt some skepticism from others about whether we were taking as much control of the situation as we could have and whether all this intervention was truly necessary or the best decision. That compounded the intense questioning I already found myself doing.

However, the light in this is that I have very good memories of Nora’s birth and I’m grateful for that. Prior to the birth, several woman friends held a “blessing way” for me and that was a time of grieving, letting go, and preparing for birthing and mothering this baby who was such a mystery to me, to us. For the birth, Jason and I were joined but a friend, now midwife, who had been with us at Kali’s birth too. She was an amazing advocate. While I felt like a bit of anomaly at UVA, noted most strikingly by the knowing glances of the anesthesiologists when I let them know I was not intending to get an epidural, there were also parts of the birth that were very empowering. I will never forget the moment of Nora’s birth when I was descended upon by the doctor, bright lights and several young medical students. This is what I had dreaded, and yet in that moment I didn’t really care about much other than the task of birthing our baby. I was taken aback when the doctor came calmly up to my head and said, “Have you thought about what position you would like to push in?” I chuckle now as it was way too late to be thinking about a change of positions, but to this day I remember that moment as one of the most empowering moments I experienced during the first month of Nora’s life. Somehow that doctor validated that I knew something about what I was doing, that this birth was our child’s birth and we had much to say about what that ought to look like. I’m very grateful for that memory now.

The following month holds some of the most painful memories for me. If there was a point at which I really didn’t know if I could do it, this was it. After a brief moment with Nora in our arms, she became another NICU baby. I was there to pump milk for her, but for weeks did not have much say in her care. We were visitors to the ward and not allowed to stay with her around the clock. My emotions were all over the map. I remember one of the times when Kali had been brought to visit and was leaving again to be with family for a few days. As the elevator doors closed, I just broke down and asked Jason how many times one’s heart can break over and over again. There were so many moments where I just wanted it to be over – I had no idea what that meant but I just longed for relief of some kind.

I really don’t think I was able to do a lot of grieving during that time. Tears came often. Friends and family who came to visit, and the many who wrote to encourage us, helped to sustain us. Kali joined us after the initial days and her presence, while complicating in some ways, kept us going. And as Nora started to grow and it was clear we wanted to be there as much as possible and a part of her care, we were given more control until the time at which we were able to room in for several days until she came home. It was during those days that it seemed like Jason and I started to get to know her and it was also during that time that she started nursing more. The quiet and lack of buzzers and beepers significantly lowered my anxiety.

Jason: As far as the birth event itself, I feel satisfied that we made the best of it under the circumstances. Sticking up for our needs and preferences was key, and we felt fortunate to have had the providers we did at UVA.

After Nora had been whisked away and checked out by the docs, I was able to visit her and get the first analysis and rough assessment of her features and functions. Emotionally that was a blur, but when I finally got a moment to myself in a quiet room soon after that, I was quickly in touch with my grief, disappointment, and despair. Those moments were pretty painful, but I’m grateful I had that brief time of introverted reflection to personally feel the losses happening “in real time.” I think they allowed me to enter the coming flurry of activity and decisions with a clearer mind.

I was able to spend more time in the NICU than Janelle was, and I am less bothered by the presence of medical machinery, though I certainly developed some opinions about how a NICU might be reformed with family contact, bonding, and support in mind. I understood the situation as unfortunately requiring unnatural intervention of the NICU sort, so I settled in to bonding with and parenting Nora there, in the ways I could. Perhaps if I had not, during that time, spent all my days by her side in the NICU, I would have been more focused on the need to grieve my hopes for Nora’s first weeks with us. Certainly I still grieve that now. At the time, however, I was so caught up in the immediacy of her physical health situation and managing her care that I don’t think that was on my mind much, except for looking for chances to insert good attachment practices, etc., into the NICU situation at every opportunity. I did experience some anxiety and regret whenever I had to leave her with a nurse that I didn’t feel confident in, or when I suspected that promoting healthy “natural” bonding and development would have had real benefits for Nora’s health, or would have prevented errors in her care or other suffering. In those circumstances, directing my reactions into productive channels rather than allowing it to become an overriding anger was a challenge, but fortunately those situations were rare, and in hindsight I doubt the overall trajectory was changed very much by those few incidents.

It helped that I was usually satisfied that the care providers had Nora’s best interests in mind, so the adjustments we had to make to our preferred ways of parenting usually seemed justified by Nora’s particular needs.

What I grieved more was the disruption of family life for the rest of us, and our inability to integrate our parenting of Kali and our parenting of Nora. It was quite upsetting to me during this period when I had time to think about it. Because Kali couldn’t be in the NICU for long periods, she spent her days apart from me and often from Janelle as well. I hated not being able to cherish her developmental accomplishments as I was accustomed to doing at home. We were staying with friends in Charlottesville that whole time, so things were pretty disrupted. Nora was Nora, and I didn’t know any other way of relating to her than the one before me. But for the rest of us this was a big adjustment, and it was hard. We all grieved it, sometimes peacefully and sometimes turbulently.

In a post when Nora was about 6 months, you are exhausted and wondering what your life would’ve been like if you had had a “normal” baby. You wonder if you will ever come to the place of being able to fully embrace Nora and each baby step she takes. Can you say more about that time and how you look back on it in retrospect?

When I read the question, my whole body responds to it. I’m so grateful that before that time, I had had wonderful moments of connection with Nora and a deep love for her had grown. Yet it was hard to think about anything during that time other than survival. Even now, I often wonder how we kept going. I was nursing Nora about every hour around the clock, and pumping about 5 times on top of that (providing milk to dear triplets that we had gotten connected to through the midwives), and taking Nora to work with me. But I have sweet memories of putting her little body in the car seat early in the mornings (that I had warmed with a heated water bottle) and saying “are you ready to go to Mommy’s work?” The coos and smiles helped. And the hope that something had to change – it couldn’t forever stay like this.

Earlier on (in the early months after we came home), I had more time for reflecting. In one of those times, it struck me how the big picture of my life felt really complicated, the future unclear, and lots of big questions unanswered. But there were still individual moments that were really precious – Kali holding Nora and singing to her or picking out her clothes for her or the way Nora lit up when Kali was around; visits from our neighbor and Nora’s baby friend who was just her age; the warmer weather and some outside times with Kali and Nora together; visits from family and friends who brought food and hugs and encouragement and lots of attention for Kali. And then I started thinking about life being a compilation of these moments and if somehow I could focus more on the moments, at least for that time, rather than the big picture, that maybe I’d be able to maintain a more positive outlook and also enjoy life more.

But to be truly honest, at the 6 month mark I didn’t have that focus. We were looking at the feeding tube operation, Nora was slowly losing weight despite all efforts to the contrary, she seemed less content and didn’t sleep for any long blocks, and Kali seemed to need us more. It felt like there just wasn’t enough to go around. And some days I just didn’t know what to wish for.

Jason: I still wonder every day what it would be like now for our family if Nora had been free from Petty Syndrome.

At the time, it felt terrible to admit to those fantasies of normalcy…it felt like a betrayal of Nora. But from this vantage point I can see that it was just an expression of our frustration and anxiety with her suffering, our hardship, and everybody’s inability to change, “fix,” or heal the situation, despite many welcome, practical, caring gestures. While we often sincerely wondered if, for Nora’s sake, it would have been better for her not to have existed, we never wished we had a different child than her…we just wished she could have been healthy.

In retrospect, of course, we know that that is the period when Nora’s body gradually turned the corner towards the end of its ability to carry on, so it’s not surprising that we, who were so wrapped up in her fortunes and so in love with her, would have been entering mental anguish at that time. I suppose we could make the case that steadfastly asserting a positive outlook without bitterness through the harshest of circumstances would be better for everyone in the long run. But the truth is that many times we felt close to the limits of our endurance. It was tempting in the moments of deep hardship to dwell on the “unfairness” of it, whether it helped or not. I suppose imagining oneself in alternate circumstances is something humans do all the time, and it’s often a valuable and important exercise. Perhaps even in our situation it was part of the healthy, normal response to our experience. It felt bad, but maybe it was good.

I don’t want to shy away from the question of what our fantasies of normalcy might mean in terms of our unconditional love of Nora. Of course every child needs to be accepted fully “…for no good reason” (to quote Alfie Kohn in Unconditional Parenting). Of course each needs to know that no matter how difficult it is for those around them to put up with whatever disadvantages there may be to having them around, that their intrinsic worth unquestionably trumps everything. The parents’ job is to communicate this to their child in ways the child will understand, always. Every parent fails at this at least occasionally (and some don’t even try). I hope and pray that for all of Nora’s seven months she felt in her fragile little bones what words couldn’t yet help her understand: that we loved her with all our hearts. From the moment of her birth one of my greatest fears was nested in the knowledge that if she survived to experience a full awareness of her differences and the difficulties those might present to her family our relationship might be fraught with challenges to her clearly realizing the depth and nature of our love for her, especially when times got hard. My heart goes out to the many who live that reality every day.

At different points in the blog Janelle comments that she is experiencing the journey like a yo-yo and Jason is more steady. What are some ways you each handled grief differently?

Janelle: I talk a lot more! I process externally often. I had more swings of emotions and showed more emotions outwardly. And I felt a stronger need for community and for people to be interacting with us and our journey. I struggled more after Nora’s death at family reunions, church, gatherings with friends when there seemed to either be resistance to or a lack of knowing how to bring up Nora or talk with us about her life and death. I’ve thought sometimes that possibly this was exacerbated for me by our writing and putting so much of ourselves “out there” for others to take in but with no obligation to respond. During Nora’s life we never sent out an update without getting multiple responses – email, phone calls, etc… So much changed after she died, and while I know in my head that that is very normal and natural, there were times that I experienced more loneliness in the journey and I think that is in part because I relied too much on others. One of the parts of my own journey that I’m working at and that Nora’s life contributed to is finding strength and wisdom within myself and having confidence in the integrity of my own process and decisions without needing constant external feedback or affirmation.

I can let Jason speak mostly for himself though it might be interesting to note a few things I perceive about how our processes differ. Sometimes I would feel sad when Jason hadn’t talked about Nora for awhile. It would seem as if he had forgotten. And then he would need to write, and he would write a poem that showed me a glimpse of the depth of his own sorrow and experience of this loss. And even now, going on two years since Nora’s death, we will each have moments in the journey where she will be on our minds a lot more or we will dream about her or we feel more deeply her absence.

I think the strength of Jason’s own grief process is his ability to process things internally, often as he engages in other activities. And he does not rely heavily on others to move forward in his process. No doubt both of us appreciate the care, concern and love of those around us. But I don’t sense that Jason “needs” that to continue healing.

Overall, I’m grateful for our balance. And I’m so grateful that I remember very few times when I did not think we were journeying well together (and those are so clearly connected to sheer exhaustion).

Jason: I think Janelle said it well. I would modify her analysis of my process, though, to say that I do need others in this healing journey. Nobody is totally introverted or extroverted, so occasionally even I need “sounding boards” or other verbal processing kinds of help (because I don’t tend to cultivate those relational dynamics, I don’t always have that help when I need it). But more than that, I need people to enter my process in whatever ways are natural for them, to spur me on in my own grief journey. Even though I do much of my work internally, I sometimes sense the progress slowing if I haven’t had much interaction with others around the memories and meaning of Nora’s presence in our lives.

Sometimes Janelle needs to have a conversation about Nora, and unfortunately I usually don’t recognize that until she’s already feeling somewhat disconnected. But I’m always glad for her to mention her need…the conversations help me, too.

At different places in the blog you talk about how the stress was making it difficult for you to relate well as a family. This is very normal. How did you work at keeping your marriage and family relationships healthy?

I cannot be more grateful for the strong foundation Jason, Kali and I had going into the Fall of 2007. The first 8 years of Jason and I’s marriage were years of building trust, learning about each other and our partnership, and when Kali was born learning to love and care for a child together. We also experienced many changes in our faith, our understandings of God and God’s role in healing, and were at a place of more peace in our spiritual journeys.

But it was hard to not have time together. We relied a lot on our relationship reserves and for Jason and I that was easier than it was with Kali. Jason and I utilized our car trips to appointments for some processing. With Kali we did our best to involve her just as much as was possible. And now the memories of her caring for Nora, coming with us to some appointments, and going for walks together outside are precious.

When we had visitors, we could sometimes get brief moments for just the three of us. I’ll always remember getting our Christmas tree off our land the year Nora was with us as my Mom held Nora inside our home. But those moments were few and sometimes very far in between. In general we tried to still have meals together, do as much of our normal routine as was possible.

There is no doubt in my mind that Jason and I’s relationship is much deeper and stronger and more beautiful because of having Nora in our family. I cannot always speak with the same confidence about Kali. I still want so much to see into her world or see the world through her eyes. One of my most painful memories is telling her that Nora had died and pushing her on the swings as she sobbed and denied that it was true. That loss, which she has not specifically cried about since, is one that I know will impact her life in various ways as she grows and develops. There are things that I have learned about parenting since Nora died that I wish I had known much earlier. But Kali has shown herself to be amazingly resilient.

Jason: Like Janelle, I find it hard to discern what effects the stress specifically has had on our family life, even up to the present. We have tried to keep things simple and straightforward in talking about Nora and our experiences with Kali, so that she’ll feel free to express herself as she needs to. But Kali seems to be a private person, and at 6 years old it’s difficult for an adult to truly understand or identify with her thoughts.

During the middle of the toughest times of Nora’s life, the combination of logistical challenges, narrowed focus on Nora’s health, and adjustments to new realities tended to shortchange the time and attention we would have liked to be free to dedicate to the development and enjoyment of our family’s social system. There was little time or energy for special activities. Kali did well at adapting her play and interaction to hospitals, doctor’s offices, etc., and genuinely seemed to enjoy her big sister role even with all its special precautions and restrictions. This was such a blessing, but also a grief in that we so wished she didn’t have to curtail her liveliness or make do with less than she really needed.

As far as our marriage relationship goes, I agree with Janelle that we lived off of stored energy, so to speak, for the most part. I don’t know if there would have been a limit to that resilience…to find out would have been to add a whole new dimension of grief to the mix. Maybe we are fortunate that we married young…in some ways we “grew up” in this relationship, so we have participated in the formation of each other’s values, decision-making style, and modes of thinking. I suppose that’s part of why the weighty, potentially divisive issues and decisions were not especially stressful for our relationship.

Still, communication is the key to any relationship, and often it did feel that there wasn’t adequate time for that. We often remarked how grateful we were that we were writing. Reading each other’s writing sometimes filled in the gaps. Again, I don’t know how long that system would have held up for us, and if we hadn’t both been inclined towards written communication before this all happened, I can’t guess how the story might have been different.

After the surgery you wrote, “‘A few days not like herself and then she’ll bounce back.’ Is this bouncing back? Crying miserably…low oxygenation levels…struggling to know how much to feed her and when…not being able to get close to her belly without her grimacing…leakage of milk and some blood from the tube site…crying with a look of fear and panic in her eyes…walking around connected to tubes all day, unable to stray more than 50 feet from the concentrator…unable to sit up well, use cloth diapers, enjoy normal mobility because of the button not being healed…having monitors that beep and alarm us…fears of the future, fears of the unknown, fears, fears, fears. Is this all worth it. For Nora? For Kali? For us? What is ahead – more invasive medical intervention? More long hospitalizations that result in more questions than answers? More suffering for her little body? More separation from Kali?...” What is your reflection on this time and these questions from this point in your journey?
Janelle: Jason and I could beat ourselves up about numerous decisions along the way. From what I know now, I wish we hadn’t had the feeding tube placed. And probably my biggest regret, or the time in which I felt most like I was abandoning Nora, was the moment in which we allowed them to airlift her to UVA without one of us with her. I can still hardly bear the sound of a helicopter without my insides curling in knots. The short week we spent at home on oxygen between the feeding tube placement hospitalization and her last hospitalization before she died was a long week full of those fears. And the longing for relief for all of us was so strong but with it for me came many confusing emotions. What if relief meant death? Could it be possible that love meant letting go? Did wanting that loud, oxygen concentrator out of our home mean I was wanting our daughter gone to? I have a long history of being hard on myself and it didn’t disappear during that year. I was grateful again for those around me who spoke to some of my own self doubts and helped me have more trust in my love for Nora and Kali and Jason and myself. It is still a journey that I’m on.

These questions are hard to answer in part because these are some of the questions that almost haunt me as we consider the question that so many likely are curious about, “Will we try to have another child?” It is easy for me to answer the question “Did Nora’s life have value?” No doubt “yes,” and while she is not here to see the ways that her legacy lives on, I believe even those 7 short months held value for her. I believe the smiles and the relationships were genuine and beautiful.

What is harder to answer are all the “what if’s” and mostly now I try to avoid asking too many of them because it normally leads me to a dead end pretty quickly. What I do find myself asking a lot is, “What would I do differently?” If we choose to have another baby and this baby also has Petty Syndrome or pulmonary hypertension, are there things I would do differently this time? Are there ways I could increase our sense of empowerment from the beginning, ways we could have been more present to Kali and Nora’s needs and not so often seen them as being in contradiction to each other’s or to our own, ways I could relieve suffering and increase comfort?

I have no feelings of anger or bitterness towards anyone in the medical community who cared for her. With the exception of a very few instances, I believe deeply that all were doing the very best that they knew with the information that they had, as were we. What I do wish, is that we had been connected with persons trained in palliative care from the very beginning of our journey, from the moment of Nora’s birth or ideally before. I believe that our experience in the NICU and during the feeding tube placement hospitalization would have been more positive with caregivers who took a palliative care approach.

Jason: We certainly did our best to grasp the social, ethical, and philosophical implications of Nora’s situation as we went along, but these questions are challenging the best minds in philosophy and medicine today. From our perspective, all we could do was to educate ourselves with the resources we had at hand in the time we had available, check in with people whose judgment we respected, hold the decision to the light of our values and then make a choice. Sometimes the choice was appropriate to make on logical grounds, sometimes intuitive. Usually it was a combination of the two.

On the whole we have remarkably few regrets about the course that was pursued for Nora, for which we are extremely grateful. A multiplicity of factors came together to help that be true, but among the most important were: supportive family, including a parent with physician credentials on each side; doctors, nurses, and other professionals who allowed their human compassion to shine through their duty; a system of ethics and values that served us well; proper health insurance; confidence in our ability to promote Nora’s best interests within the system and parental courage to exercise it (most of the time); supportive work environments; and a financial and logistical lifestyle that usually allowed enough space to devote adequate time and attention to Nora’s care and its related decisions, especially at critical junctures.

The issues you raise here continue to challenge us on many levels. We are still somewhat connected to UVA, especially its Palliative Care initiative, and are interested in exploring the junctions between illness, death and dying, medical practice and technology, social justice, environmental sustainability, western culture, and the evolution of ethics.

The whole journey had many implications in your family dynamics. In different blog posts you mentioned anxiety for what Kali was experiencing. In hindsight how was Kali affected by the difficulty of Nora’s difficult pregnancy, birth, and short life? What was the grief experience like for Kali?

Janelle: I would love to be able to answer this question. It’s one of those things I often think, “I’m eager for when Kali is 20 and I can ask her what she remembers and how she felt…” I can make some guesses, but they are pure guesses.

During Nora’s life, Kali said a few things from time to time to give a window into her process. At one point she asked Jason if he was glad that we had had Nora. In another bout of extreme emotion she said that we would never be okay again. But those instances were not common and overall she continued to grow and thrive and develop and make us laugh all through Nora’s life.

When Nora died she sobbed and showed intense emotions. And since her death there have been numerous times where I thought the emotions displayed about something unrelated to Nora was more about that loss than the presenting problem. I remember a time when a balloon popped and Kali just exploded and was convinced that we had to put it back together again. For me it seemed like emotions connected more to a Mommy and Daddy who can’t fix everything – who can’t make a balloon whole again and couldn’t make her baby sister healthy.

Yet, often now, the more time passes, Kali’s memories seem very vague. She hardly ever mentions Nora’s name. She will admit to remembering a few things she did with her but she says she doesn’t remember holding her. She is interested in looking at pictures when I have them up, and seems curious about my tears but not identifying with them.

I often wondered if she struggled with any of the confusing emotions I had. Was she inwardly glad to have Mommy and Daddy more present with her? Was she glad to not be tripping over oxygen cords or needing to always be quiet and careful around Nora? And was she able to be okay with those feelings or did they get all muddied up with also missing this little person who had made such a big impact in such a short time?

Kali talks more about a future brother or sister than she does about Nora. There is no doubt she has a deep desire to care for another little person in our home. And that she has a capacity to love and nurture that is not being fully tapped into now. I don’t sense any bitterness in her at all. And overall, I am grateful that she is energetic, creative, and just as fun as she was before Nora was part of our family.

My challenge is to let her journey be what it is. Not try to judge whether she misses Nora or not based on what she does or doesn’t do. Or try to push her to express emotions or feelings that she is not wanting to or able to express. And to be ready to meet her along the way as she needs me to be there. That doesn’t always come easily. Kali was always an intense little girl but also pretty happy and content. We journeyed through her second and third year wondering about the tantrums and outbursts we heard so much about. In the year-plus since Nora’s death (and some during her life), we have experienced much stronger and intense emotions from Kali. But with a child who is changing so much every month it is hard to know what to attribute it to. And it sometimes seems counter-productive to try to do so.

Jason: I think Janelle said that well. Much of what Kali experienced was mysterious to us at the time, and will fade from her memory. I share the consternation at trying to understand what, if any, of the difficulty in Kali’s difficult moments stems from grief and loss. I think it’s fair to say that as time goes by, less and less is directly related, but it seems likely that the trauma and grief, as well as the joy and love, surrounding Nora’s life and death are inextricably incorporated into the foundation on which Kali is building her identity, which is as it should be.

On the whole, I’d say we are doing well, but only time will tell whether there are any tough spots down the road that have their roots in the challenges of this experience for our family.

After Nora’s death you frequently comment on how messy your emotions and questions feel. What was it like to try to put your life back together after Nora’s death?

Janelle: I mentioned in one of the earlier questions that when we initially learned Nora was not growing well, I felt like my world was falling apart. By the point at which Nora died, I did not feel that my world had fallen apart. The grief was intense, the longing there. But her death was not caused by an accident. Her death was not a surprise. In some ways we had been grieving loss for 10 months and while the grief shifted dramatically on June 4th, we had been able to prepare for that shift almost more than previous points in the journey.

I’m so grateful we have that last week with Nora to remember. If Nora had died in transport to UVA or had died quickly and without us there to talk to her and hold her and know exactly what happened when, I believe our experience of grief would be very different. Being there with Nora as she died was both excruciatingly painful and beautifully peaceful. There was sadness in it but not trauma. I attribute much of that to our connections with a palliative care doctor who sat with us and heard us, listened and validated our questions and asked what we wanted, for ourselves and for Nora. We developed a care plan together that helped us get Nora out of the ICU and into a personal room where we could be with her around the clock. It enabled us to take charge of giving her medications for comfort and stopping any additional medical interventions because her body would have been too weak to sustain them. It empowered us as the two people who knew Nora best, to be her advocates even as we said goodbye.

I often reflect on how many beautiful memories I have from that last week: A few final smiles; nursing her and having her reach up towards me; having family and friends come and say goodbye; shedding tears as neighbor and close friend comforted us and Nora with dulcimer music. Those have carried me in many ways.

But it is almost harder as more time passes. As our family’s experience that year is, for many of our friends and family, a memory created largely by our letters and updates rather than direct experience with Nora, it is sometimes a challenge to know how to integrate Nora and our memories into our life and relationships now. And how does missing her connect with my longing to embark on the journey of parenting another little one again? I also think about how my work responsibilities have changed in the past year or two to the point that there is no way now that I could take Nora to work with me. I feel relieved to be getting more than 1-2 hours of sleep in a row and to be able to use our wood stove to heat our home without worrying about the oxygen equipment in the house. How can I feel gratitude and relief simultaneously with a strong sense of missing Nora? Jason reminds me that Nora was not the oxygen equipment that helped her breathe. And others have helped me “normalize” some of the messy and complex feelings and questions.

A few things that helped and continue to help me are: working together outside as a family and working on a memory garden for Nora; sharing Nora’s baby things with other friends who were expecting babies and continuing to pump milk for the triplets as long as I was able; continuing to write about the process and take any opportunity to share our story with others when it seems mutually beneficial; continuing the journey of personal growth and change around living with uncertainty, accepting what is, being present to all the beauty in life amidst the pain and even sometimes because of the pain.

Jason: There is no way to put the old life back together. We wouldn’t fit in it anymore anyway. We’ve changed and grown, and that old life isn’t ours anymore. What we had to do was to experience each moment as it passed, especially at first, because the moments were big enough to occupy our whole hearts…we would be crowding out the beauty, pain, and importance if we had worried too much about the loss of the past or the challenge of the future.

Slowly, messily, our new life is emerging. And I suppose one of the gifts of Nora’s presence with us is the realization that fitting ourselves into the life we make for ourselves never really did work all that well, and never will. New life is always emerging. That’s not to say we can’t pick up the pieces…they might be useful! And that’s also not to say that it’s easy. But we’ve come to realize that the hardest part is to learn to trust the process. For some reason it’s enticing to try to control it, but Nora helped me understand that that control is an illusion.

What did Nora teach you about life and love? How are you different because of her time with you?

Sometimes it seems like life’s lessons ought to be more easily learned without hardship or challenges. I remember watching my Mom journey with cancer with such strength and grace, even as she faced straight on her own mortality. I remember the community that surrounded her and how many gifts emerged in those difficult months. I would never wish cancer on anyone, but I am grateful for how journeying with Mom during that time enriched my life and showed me that I, as I supported her, could do things I didn’t think were possible for me.

Nora’s life was much the same, and because of my hour by hour interactions with her, and even more so. There is no doubt that Nora helped me find strength within myself that I don’t often uncover. If someone had told me that I would care for our second child for 7 months, grow to love her deeply and then hold her as she took her last breaths, I would have had a hard time believing they were talking about my life. And then to learn that I would go on to start donating blood every eight weeks in her memory after attempting to recover from a slight needle phobia for years would have been another stretch.

So many of the lessons are still finding their way into my life, but there are also ways I feel transformed by her presence. Having a baby in my life that never was able to crawl or walk (though she did roll over once for us, all 6lbs of her) and who struggled for each ounce she gained and who was bound to “look different,” did more for me in my decades-long journey toward self-acceptance than many counseling sessions. My weeks on bed rest seemed to be long enough to break a slight “exercise addiction” and has enabled me to place more of a focus on healthy relationships. I feel more gratitude for health and for the life that Jason and I are building here with Kali and with Nora’s memory, and more aware of how much power I have to alter the course of my life by the way I approach situations that are not fully in my control and are not as I would wish them to be.

I’d like to think that I’m more accepting, more loving, more open, more free because of Nora. In the year after her death, there were times where I experienced intense joy and satisfaction in life. Those moments came on the tails of times of deep grief. Somehow experiencing the depth of sorrow with Nora’s death also opened me up to experience deep joy also.

One of the moments of bonding with Nora just a month or two after she came home with us involved feeling a deep connection to the chorus of a song by Over the Rhine that was playing in the background. The words of that chorus maybe capture the most poignant of all the lessons that I’m still yearning to integrate fully into my life: “I was born to laugh, I learned to laugh through my tears. I was born to love, I’m going to learn to love without fear.”

Jason: It takes a baby to teach people how to be grown-ups. Somehow Nora having been a baby—my baby—her whole life has been especially instructive. I’m so much less afraid of death than I was before, because she wasn’t afraid and she did it so well. She never cared about money, planning, status, etc…she just experienced her loves and joys and pains as they came, and trusted the universe.

In terms of specific changes to my life, I find that money means even less to me now than it ever did. I enjoy “every sandwich” (to quote Leanord Cohen) and my people with more presence and peace. I am more in touch with my emotions, needs, and desires. I find that I experience more personal freedom than before. I am willing to try more things, and love more freely. I’m starting to think I might even soon enjoy dancing even though I look silly.

I suppose I’m also more sober about my invincibility. “Shit Happens,” and boy, does it ever sometimes. I would wish the death of a child on no parent, ever. I said, though, after her death that my heart was broken, yes, but not broken down…broken open. There was something about being helpless in the face of tragedy that convinced me that the world is a good place that I can trust. Not because it didn’t hurt me, but because there was goodness and beauty all mixed up in all of it. I know not everyone’s experience of grief is this way (we had a lot of preparation time before her passing, which I’m sure was helpful), and not every day is the same for me, either. But I am grateful for the gifts she brought to me, which I did not earn.

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 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.

Jason Myers-Benner
August 8, 2008

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