A day of remembering...

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

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

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

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

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

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

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

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

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

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

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

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

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

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