Pennsburg again...without Nora

From Jason’s parents’ place in Pennsburg, Pennsylvania (PA)

Some moments I feel so raw. One moment I’ll feel able to enter into a conversation and the next I need to get away, and the sooner the better. It seems innocent for a conversation to go from raisins in baked goods, to cinnamon raisin bagels, to sundried tomato bagels, and then the question is posed: What food is so good that you should make sure to have it before you die? I didn’t hear much more before leaving the room except for “blueberries.”

Blueberries. There aren’t many fruits that I actually thought about Nora getting to enjoy but blueberries were one of the few. On our few walks that we did get to enjoy outside, we had walked in the blueberry patch next door at Samuel and Margaret’s. And days after we returned home from UVA without Nora, the first berries were turning from pink to blue. I agree. Everyone should get to taste a blueberry before they die. It’s not fair that not everyone gets to enjoy that sweet, tangy, seedy and smooth flavor. It drives me crazy some moments to think that Nora did not and will not.

This week has felt so bittersweet for me. We’ve done so many fun things together, the three of us. Kali has enjoyed water in many forms: the bay, driving over and under and beside large bodies of water on our road trip, splashing in puddles, the pool here at Mom and Dad’s, and a rainstorm that left water on pine trees that rained on her after it officially stopped raining. And we now find ourselves surrounded by supportive and loving members of Jason’s family. Cards, pictures and reminders of Nora are around and the conversation occasionally comes back to her brief physical presence with us. That feels good and right. And it feels good and right for the time to not always be focused on Nora. However, it seems that my process includes the need to think about Nora when she comes to mind, to grieve her absence when the waves of emotions come at me, and the timing of the waves and thoughts do not always neatly fit into all the other activity going on around me.

I knew I would feel very sappy driving up Mom and Dad’s driveway Thursday afternoon. It had been the Christmas before last since we were here, since we missed this past Christmas due to Nora’s inability to travel. Going to Cape Charles without Nora was hard but it was not a place I had ever dreamed we would to take her. Pennsburg is different. She was supposed to be here with us: enjoying being held and doted on by family, enjoying her first dip in the pool, the baby swing, seeing the chickens and the garden, going for a walk down to the pond and watching her big sister pull in a fish all by herself, and experiencing a place that holds many special family memories.

Sometimes I wonder if we should have risked traveling with her. Will I come to regret that we didn’t create any memories with Nora in places that I will visit many times in the coming years? If I had known we only had 7 months with her, would I have lived differently? Would I have risked more and sheltered her less from germs, the cold, the stress of travel? Would she have tolerated it if we had tried? And even if we had successfully made trips to our families’ homes in Pennsylvania and the “Mountain House” in West Virginia, would it really have made this time any less painful? Likely the answer is no, but of course I can’t help but wonder.

One of the best things for me being here is to see Kali once again enjoying the company of two of her cousins, Joshua and Sabrina. One of the harder things for me is watching Joshua and Sabrina together, as well as watching Jason and his siblings interact. Sometimes I feel like it is kind of crazy for me to reassure Kali that she is still Nora’s big sister. What kind of comfort is that? Does it just rub it in that Nora is no longer present with her for her to hold, dance for, kiss on the head, play with and pick outfits out for?

So that takes me once again to a question that Jason and I find ourselves coming to every now and then, pondering and commenting on for a few minutes until I get overwhelmed by it and then retreating from until the next time. Will we try to have another baby?

Before Nora was born I found that an easy question to answer. Absolutely not! There was no way under the sun that I would put myself through the same ordeal again: bed rest and a high risk pregnancy full of unknowns. And then after Nora was born and still in the NICU I was quite sure that the best route for future birth control was the most permanent and irreversible option possible. Jason wasn’t ready to slam, lock and dead bolt the door quite yet (and I’m grateful to him for that!). Clearly it wasn’t the time to make any big and permanent decisions.

It felt like it was only days after Nora died that I first started getting the question from others. Of course it wasn’t that it hadn’t crossed my mind, but I almost felt guilty for even entertaining the thought. Something about it felt like I was dishonoring or discounting Nora’s life to so quickly be thinking of trying to “replace” her with another baby, and hopefully a healthy one. While intellectually I knew that I could never replace our second child, something still didn’t sit right with me to be processing that possibility or have other persons asking me to respond to it.

At other moments I start to wonder if it wouldn’t be dishonoring Nora to not give our family the chance of loving and nurturing another baby. It seems that my main reason for stating emphatically “never again” is wrapped up in one word: fear. I’m not sure I have what it takes to try again. I’m not sure I could emotionally hold up for 9 months of pregnancy again. And what if our next baby would have similar challenges? When I have had it confirmed and reconfirmed that I am someone that does better when I know what to expect and how to plan, why would I willingly embark on another journey that would be undoubtedly, even in the best of cases, full of unknowns and mystery? Why?

That is where Nora’s life stares me boldly in the face. And I have a whole new set of questions to answer. What did her life teach me about risk? About love? About what it means to live fully and to be present to the experiences life brings our way? At times during my pregnancy and at points during Nora’s life, all of it felt so pointless and painful and not worth it (for us or for her), but now I’m not so sure. I can say for sure that I am glad that Nora entered our world, even if only briefly. I can say confidently that I loved her and that I miss her and that I’d give a lot of uncertainty and unknowns to hold her and kiss her soft cheek and twirl one of her tufts of hair. her life was worth it to me. I’m not sure if I’ll ever be able to answer to my satisfaction whether it was worth it for her. I hope so. I hope that even though she never got a taste of blueberries, that we were able to give her many things that every person ought to experience before they die: lots of love, kisses, hugs, music, touch, holding, comfort, and affirmation.

When Kali was smaller and struggled with a new task, we would often encourage her by saying that she could do hard things too. It was cute to see her absorb that and later on come back to us when we were trying to do something and were momentarily unsuccessful and we’d hear her little voice say, “you can do hard things too.” Sometimes I feel like Nora taught me that I can do hard things, harder things than I ever thought I’d have the strength to endure. We’ve mentioned it before but we both feel like one of the main lessons from her life is that risking love is always worth it. Jason and I don’t feel anywhere close to making any kind of major life decisions right now, but when we come to more of a juncture in the road where the question comes more to the forefront, I hope that this truth is central to our process.

Often times I am almost haunted by hearing myself saying, “we could have been happy just the three of us.” In my most despairing and overwhelmed moments when caring for Nora took all of me plus some, I had such a hard time not wishing for our “pre-Nora” days when the adult-child ratio in our home was comfortably 2-1, and life felt a whole lot less complex. We won’t ever have that though. There will never be another “pre-Nora” day. And I’m not sure I wish for that anymore. She is so clearly a part of us and is intricately intertwined in our ongoing journey. This is more messy, no doubt, and some days I feel so scared about how each of us will process this loss and mostly about Kali. I know that we can be happy as a family of three living persons. I know that we will find our way into things that fulfill us, into relationships where we have persons to nurture, places where our gifts can be used and our time well spent. We enter another time of unknowns and finding our way. While I maybe feel that I’m better with predictability and more content when life feels planned out so I know just what to expect, I’m not sure that life is most fulfilling that way or that I’m as fully living. I also know that I’ve had to rely on others much more over the last year and while I am eager to start preparing most of our own meals again, I hope to retain the sense that my life is dependent upon and intertwined with my community. I want others to know that I still need them! I’m not sure I want to come across as having it all together again – an impression I never was so happy that I seemed to exude!

This reflection and my energy for writing are coming to an end. It’s been another session of writing in spurts and stops. The biggest intermission came this afternoon when Jason’s whole family (minus one sister who won’t arrive until tomorrow) went bowling – another first for Kali. Laughter found me again. Kali’s presence has been so healing for me. Her love for life is contagious. Plus, I’m not sure many could watch her bowl and not smile. Most of the other adults got through two games in the time that it took the kids (and three of us who were okay with having the help of the gutter-guard) to play one game. A good part of that delay had to be caused by the amount of time it took for Kali’s ball to get from start to finish. Thankfully we only had to call them once to rescue a ball that had stopped rolling about ¾ of the way down the lane. She tried orange balls, a pink ball and two shades of purple. She tossed a few balls but mostly put them on the ground and gave a good push. She was proud of all of her 60 points! On the way home though she admitted that between bowling and miniature golf (which we did in Cape Charles, also a first for her), she preferred miniature golf. While I can’t remember her exact words it had something to do with the fact that in miniature golf “you get talenter and talenter” because the holes get more challenging and in bowling you just do the same thing over and over again.

Now she is out enjoying the pool for about the sixth time or so since we arrived. I’m about to put french bread in the oven. It has felt good to get my hands in dough again. Love to all, Janelle

Cape Charles!

I am writing this letter from Eliza Hoover’s graciously loaned cottage in Cape Charles, VA, which is at the southern tip of the Delmarva Peninsula, on the shores of the Chesapeake Bay. Our family getaway promises to be what we hoped for in terms of a vacation environment. The family friendly beaches feature diminutive wave action and a shallow section that stretches some hundred or more feet into the bay, as well as one of the East Coast’s few opportunities to watch the sun set over the water

Mom and Dad Myers were here with us for Friday evening, all of Saturday, and half of today. It was great to have them. Dad and I did some fishing: we had great luck, but not many fish. The terns were diving all around the pier, the rays were swimming close and putting on a show, we bumped into a few colorful people, and we got a good dose of southern sea breeze. Dad got to take home two croakers as a bonus. For those of you that know Dad, it will not surprise you to know that we took an excursion yesterday to the Eastern Shore National Wildlife Refuge to see the displays in the visitors’ center and walk the trails to see what we could see (birds). On our way out we stopped by the boat launch ramp to see what shorebirds might be hanging out there. Crossing a bridge over a tidal mud flat before getting there, Dad said, “Now this is the kind of place you might see a Glossy Ibis”, whereupon I said, “And there it is!” It was within 30 feet of the car (one of many “lifers” for me on the trip so far). What a treat! We enjoyed watching a pack of snowy egrets chase minnows through the shallow water and then moved on.

It felt sort of strange and moving for Janelle and I to drive past the UVA exit on route 64 on our way down here. Reaching for a positive interpretation, I told Janelle perhaps it was symbolic…now we find out what’s beyond UVA. As I write that now, it scares me a little. This is uncharted territory for us in terms of our family system, and while I’m confident that we will make our way here successfully, I am not feeling very prepared yet for the challenge. Kali is very free with her musings and imagination regarding Nora, and I am incredibly grateful for that. I think it’s very healthy. But I understand the impulse some parents apparently feel (according to some communications we’ve received from adults who had lost siblings in their youths) to prohibit their surviving children from mentioning the deceased sibling. Those references are the most painful thing I face, because I am simultaneously reminded of the loss Janelle and I are facing and the loss Kali is facing. Earlier today Dad asked Kali what she misses the most about Nora. First she indicated that she couldn’t choose, but then said, “If I have to choose something, I guess I would say ‘picking out her outfits.’” She was and is such a beautiful big sister. This evening Kali told us she had just seen Nora earlier in the evening, and that the doctors were just keeping her right now because she couldn’t come home with us, and we would go pick her up later. It was clear that on some level she knew she was saying something we couldn’t possibly accept as true, but it must have served some internal purpose for her to arrange the story that way. I don’t know much about child psychology, but the little I know suggests that at this age children experience a reality which is rich in imaginative images and exaggerated or freely rearranged perceptions of time and chronology. I can only assume that she’s working through this in the way she needs to, and we aim to support her process, speaking matter-of-factly about Nora’s life and death so that she can feel free to speak about it, too.

The one thing we wonder about is how much of our own process we should expose her to. The last thing she would seem to need at this age would be a perception that in many ways her parents pretty much have no good ideas about where we go from here (or feel that way, anyway). ALL the evidence suggests that her ears are one hundred percent open while we are talking, especially about Nora and ESPECIALLY when it doesn’t seem like she’s paying any attention. If she doesn’t understand something, she is sure to ask about it at some point: sometimes quietly, days later, and sometimes demanding an answer on the spot (“…if you don’t know then can’t you GUESS?!”). I am not concerned about those things we have an opportunity to discuss, though sometimes I feel strange discussing such matters with a 4-and-5/6-year-old, and can’t believe that this is our family having these discussions. What does worry me a little are the things she might overhear and think she understands, but which, if I knew how she were understanding them, I would desperately want to correct. By definition, I don’t know if any such misunderstandings already exist.

As one result of the effort to protect Kali from the full, untempered force of our own processes, Janelle and I find that our opportunities to mutually and freely communicate about Nora’s life and death are somewhat limited. Furthermore, we have noticed that during the times when we were writing frequent updates to all of you, we felt fairly in tune with each other’s process anyway, and when we haven’t been able to write as much, we start feeling out of touch. That is to say that writing these updates and reviewing each other’s writing has been a powerful tool for us keeping in touch with each other as well as with all of you. Thanks for being such a supportive context for our family process! With that in mind, the following paragraph will begin an attempt to relate a bit of my own process in terms of my grieving my relationship with Nora. I won’t try to speak for Janelle, partially because it’s not a reasonable thing to try to do and mostly because she speaks so well for herself.

I am a person who lives more or less in the moment much of the time (this can get me in trouble when it comes to details). Is that why I sometimes have a hard time, when not looking at photographs, remembering exactly what Nora looked like? Nora died less than three weeks ago. Is that possible? It sure was hard to believe when we were splashing around in the shallows at the beach. There are moments when I become frightened and defensive, feeling a little anxious about looking at my loved ones or even my own body, lest I find some sign of deteriorating health. There are moments when I feel relieved that we can go on trips again. There are moments when I feel so joyful for the life she lived and the lessons we are learning from her. There are moments, too, when the most important thing on my mind is where the bathroom is or the fact that I could really go for a nice sun-dried tomato bagel with cream cheese (life can’t stop for long if it is to continue at all). There is a part of me that still hasn’t left that hospital room, keeping vigil with her, and, like Kali, not wanting to let go of the hope that she’ll be coming home soon.

This weekend I’ve been thinking a bit about something Dr. Braddock, the geneticist, told us in one of our first meetings with him. He said that in his line of work he ends up being shocked at how often everything goes right. I feel that, here at the bay, the evidence of that truth is startling. The gulls going through their multiple juvenile plumages like clockwork, the silvery fish that, when pulled from the surface have, sure enough, that one dark spot behind the gill just like the book said they would. Ospreys feeding fish chunks to their young and rays splashing and skittering in some kind of ecstatic ritual while giddy, scantily clad lovers share a cozy beach towel onshore reinforce the vibrancy that my mind (when it’s feeling healthy) easily recognizes in the faces of my treasured people. But at the same time there is the little fish that came in on Dad’s line. It was less than three inches long, and had probably been pestering his bait when its belly got snagged on his hook. Before he had a chance to reel it in, something ate its head off.

I am not equating Nora’s life with the life of that unfortunate fish. Nor am I accusing Dad, the fish hook manufacturers, or the bigger fish of any immoral act. The bay ecosystem is critically dependent on bellies full of unfortunate fish. What I think I am saying is that there is a coin deep within my consciousness that has two sides. One side represents the tenacity of life. Self-replicating molecules producing spectacle upon spectacle to gain the merest advantage over their neighbors, and I can’t get enough of it! The other side represents the tenuousness of life. Individual organisms, individual species, whole bay ecosystems can be decimated or destroyed by random misfortune or seemingly miniscule alterations of the environmental conditions to which they are adapted or, as in Nora’s case, the biochemical basis for developing the capacity to thrive in their given environment. The isolated or temporary fragility doesn’t diminish the overall vibrancy. It’s like a house of cards or a sandcastle that is rebuilt, and rebuilt, and rebuilt.

What I’m trying to sort out is how Nora fits into all this. Obviously she was biologically unsuccessful, but until her discomfort was too distracting at the end, that drive to succeed and accomplish was so evident in her; all the more touching perhaps because of the knowledge that she was bound to a body full of challenges to her success. I wanted so much for her so succeed in her own way and I knew without a doubt that given half a chance she would surprise us all. We were already so proud of her! Now that she’s suddenly (and yet not totally surprisingly) gone I’m trying to make sense of what I’ve learned about the two sides of that coin and how they affect human families. What have we learned about celebrating the unique vibrancies of each individual, while mourning the unique fragilities of each as well?

It’s not the project for this time period, and it may never be my project at all, but I’m interested in the moral questions involved in the economics of Nora’s life. We ran up quite a hospital bill for her (think in the hundreds of thousands), which our insurance company has covered in full, fortunately for us. Money seems to have so little to do with anything regarding Nora, but it represents an expenditure of potential that could be seen as a burden on society, for which society will supposedly receive no recompense in the form of an able worker. I understand that few people would have expected us to choose any course other than what we chose, and I understand that this is what insurance companies are for, etc. But I’m not completely satisfied with that, and I feel I want to stick up for the real contribution Nora may make to society, beyond the spiritual and inspirational effects that many of you attributed to her in your kind communications to our family upon her death (certainly we feel the same way). In some ways, I see Nora and all other individuals with genetically unusual conditions as Rosetta stones. They each make their contribution to the deciphering of the cryptic code that is the human genome; we need to pay close attention to them while we have them, because we don’t know what mysteries they may be the key to unlocking, how long they will be with us, or if we’ll ever meet another like them. I suspect that this perspective could be more or less freely extrapolated to the spiritual/moral/philosophical arena.

In my amateurishness, I have little concept of exactly how our Rosetta stones benefit the practice of medicine now or will do in the future, though I suspect that if breakthroughs occur in the realm of gene therapy that will amplify their contribution. But I hope that my experience with Nora will engender in me an appreciation for just how important the uniquely unique among us are to all of us, and what heroes they are for keeping up the struggle to succeed against staggering challenges. They and the families that care for them deserve acceptance, inclusion, admiration, respect, and support from all of us. Though we had little such experience in our short sojourn into the world of disabilities, we are aware that what many individuals and families feel from their social networks and society is too often the opposite. Relating to these heroes is an opportunity that, though it may stretch us in painful ways, we wouldn’t want to miss.

I’ve now gone and written this long letter that is half full of my intellectualizing about our experience with Nora. Maybe it’s easier for me to write (and talk) about the big issues than to face my feelings now. I find them to be much more complicated and less accessible than in the days following Nora’s death, when our love for her was so clear, letting go so hard and right, and when little boy sobs overwhelmed my grown-up inhibitions, filling my lungs to bursting with the precious air.

Thanks for sharing this journey with us, Jason

Monday, June 23, 2008

Now that I’m caught up on some of Jason’s thoughts, it’s time to add a few of my own. I wish the battery in my laptop would allow me to write these thoughts while sitting on the shore of the bay, the spot that has brought me the largest swells of emotions and feelings of closeness to Nora’s presence in the last few days. When we arrived Friday night and first walked the 2 blocks to the shore of the bay, I stood there feeling in awe of the beauty around me and overwhelmed by the emotions that came with slowing down and stopping and doing nothing more than watch Kali as she experienced the largest sandbox and body of water she had ever encountered. As tears came I told Jason, “I think I might cry a lot here.” In many ways we knew coming into this trip that this would be the first time we intentionally slowed down since Nora’s death, and in many ways the first time I slowed down since prescribed bed rest last fall.

Now slowing down would look much different to Jason and I, without a very energetic little girl in tow. For some reason my logic that if we all took a nap in the middle of the day we could get up earlier and get to the beach and could also stay up later on the beach just doesn’t fly with her. She is quite clear that she DOES NOT take naps. Thankfully the last two days she has “read” stories to me for close to an hour and I’ve gotten a short, but rejuvenating, nap.

Jason alluded to the fact above that as we journey with Kali we are often surprised by what she does or does not take in and how she is processing it with us or internally. I had one of those moments here that will stick with me for awhile. Kali has been getting so much mail (thanks to many of you)! Last week we got a little box with four little finger puppets, which have been the source of much entertainment since (that is until she bought her magic worm on Saturday, the subject of another paragraph to come). We had the finger puppets out here and Mom or Dad were asking where we got them. Kali didn’t remember my friend’s name so I was explaining that we got them from my friend Melissa. Kali quietly and with a different kind of look on her face said, “I thought she burned in the fire.” It so shocked me to hear her say that that it took me several seconds to regain my composure and bend down and hug her and explain that she was right that our friend and neighbor died in the fire, but that I had another friend named Melissa who lives in another state and sent her that package. And while Kali and I haven’t talked about it since, I have come back to that moment many times. The fire that took Melissa’s life and burned down Charles’ trailer happened over 2 years ago, the spring after we moved to Fruit Farm Lane when Kali was just 2 years old. We wondered in the days after the fire as we were processing our intense emotions surrounding the events of that night if that event would be the subject of Kali’s first vivid memories.

As we have come and gone from the hospital and home over the last number of months we have watched the walls of Charles’ new little home going up, on the very site of the fire. When Charles came over with strawberries from his patch and his condolences the day Nora died and we got home, I knew I was talking with somebody that knew what that deep sense of emptiness feels like. And while I’m not grateful for the fire or that Nora’s life was so unfairly abbreviated, I am grateful for the people we have to journey with us that can tell us, from knowing, that sometimes you just have to keep putting one foot in front of the other.

So back to that magic worm: Kali has received lots of stickers, activity and coloring books and in a few cases cash! So she has had some spending money for this trip, which is of course a pretty big novelty and she, of course, has very specific ideas for how and when and on what to spend it. Many of you are becoming aware that one criteria for almost anything right now is that it come in some shade of purple, and if that is unavailable then orange “for Nora” will do.

On Saturday, before going to the wildlife refuge, we stopped for lunch at Stingray’s, a local restaurant with an adjoining gift shop. Right at the front was a rack of “magic worms” and to entice the customer even more they had a video playing where they showed the amazing way that this worms wiggled through your fingers. Kali was hooked, not so much because of the worm or the video but because they came in purple. But they were also $6. That didn’t matter to her in the least so she proceeded to spend some of her precious gift money on a “magic worm.”

No sooner had we unpackaged it than I learned that it wasn’t so magic at all. I’m not sure how to describe it other than to say that it reminded me of an extra soft, extra puffy pipe cleaner (without the wire inside and with two little eyes glued on one side). Included in your purchase was a small amount of “invisible” string that you were to tie to its nose. Then if you tied the other end of string to your belt (which Kali informed me she didn’t have) you could move your hand around and the worm would go in and out of your fingers and those watching would deem is magic since they couldn’t see the string. Momentarily I bemoaned the fact that my daughter had been a sucker to a huge advertising gimmick. She had spent her generously gifted money on a crazy worm that in fact did nothing. I reminded her of one of her story books in which Arthur bought his pet Pal a “treat timer” that cost lots of money and broke just as soon as they got home.

Well, once again my children become my greatest teachers. How wrong I’ve been about that worm. I am quite certain now that she could have spent that money on something that I would have deemed more “worth” the $6 and it would be sitting alone in our little cottage getting little to no attention. BUT the worm has become a centerpiece of our vacation. It does Lite Brite with us, it plays school, it hides, it helps with the nighttime routine, and it even enjoys a snack with us from time to time. I had once again underestimated the power of her imagination. To her the worm is just as magic as she makes it. And she has reminded me of that on several occasions!!

There are many times that I could easily become quite envious of Kali’s ability to be so present in any given moment and the way her imagination can take her to places that those of us stuck in reality dare not venture. Last evening when she talked about having just seen Nora, I wondered so much what she was experiencing. Clearly seeing Nora in her own way is so much less threatening to her than when I talk about looking at pictures or talking about Nora together as we remember her and miss her. She weaves things about Nora into so many conversations every day, but on her own terms, in her timing and as it feels comfortable and natural to her. It seems the easiest thing for her is to almost act as if Nora is in fact still alive, but just with the doctors until she can walk. And maybe, for now, that is just fine. Both Jason and I are eager for a chance to talk with persons who are more familiar with children and grief and can help us know how to best journey with Kali through the coming years as her needs and developmental stages shift and change.

Hopefully along with that we might gain some tips for how we journey through our own process of grief. Some moments I feel like I’m living in a world so different than the one I inhabited for 7 months with Nora. Maybe it is partly that many of the places I’ve been in the less than 3 weeks since she died are places she could not have come with us too. But it is in those times and places that I miss her and the ache is so real and present. Sitting on the beach the other evening watching a great blue heron come in for a graceful landing near the shore was one of those moments.

There have also been reminders during this trip that perfect strangers will keep Nora alive and constantly present in my memory and will challenge me to think about how I incorporate Nora’s life and death into our family’s journey. For two days in a row a family has been beside us on the beach. They have two adorable little girls (age 3 and 4) who are little fish in water and also very sociable. Yesterday, while Kali was busy digging a big hole with Daddy on the beach, I was in the water with the little girls and our big floaty pretzel. The mom, who is expecting their third child this fall in late October, was chatting with me casually from the shore. “So is she [Kali] your only child?” How do I answer this kind of question? Under the circumstances (with 20 plus feet separating us and me trying to keep up with the floaty pretzel and two little girls splashing around me) I said a casual “yes” and we went on to talk more about her and their family’s move from Long Island. Later on we were sitting on the beach together watching the kids play and talking more; she asked if we were thinking about having more children. Now at close proximity, I shared what really brought us to Cape Charles; we had just lost a baby a few weeks ago. And once again I’m hit with this feeling of “is this really me talking…did I really just watch my baby die?” So I sat there talking with a stranger about how life takes us places we never would have imagined and answering her questions about Nora and about my pregnancy with her. The next minute Jason, Kali and I are gathering our beach toys and heading back to the cottage to get washed up for lunch. Life, death, the beach, playing in the sand, grief, families, emotions, birds and more, all mixed together in this journey…our life! Janelle

June 4th reflections

Father’s Day and Kali is officially 4 and 5/6 years old today

This morning before Kali woke up, Mom and I talked some about the night of Nora’s death. I have yet to write much down about that night, though the emotions are clearly near the surface when I put words to the experience. I haven’t cracked my journal open for months and now the task feels daunting. On one level I know it is just my journal and doesn’t matter in the least. On the other hand I’m not sure how to even start. It feels so abrupt to write, “Nora’s dead.” Then it puts that dreaded fact in writing, in the place that has housed some of my more conflicted emotions about my journey through pregnancy and then Nora’s birth and short life. I keep bringing my journal along on various short trips and end up using a computer instead, maybe because the backspace key is such a handy feature when trying to put words to an experience as difficult as journeying with one’s own child through death.

I think about the night of her death numerous times each day. Sometimes the feelings that come along with it are ones of gratefulness. She didn’t suffer at the end. Jason and I were both able to be there with her. We were able to hold and touch and talk with her. We had medical professionals who were kind, compassionate, available but not intrusive, and ones that 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 and to be disrupted as little as possible by the medical aspects of the journey (which at the end were merely pain control and comfort care for Nora).

At other times I’m overwhelmed with a feeling that I could never do that again. Ever!! This is where the comparisons with the births of our two daughters start. Kali and Nora’s births, though different, were both amazing experiences. Painful. Beautiful. Challenging. Filled with mystery. Peaceful. Life altering. And after each, in the days and weeks following when I would reflect back on them, I couldn’t help but think at times, “I could never do that again.” Nora and Kali’s births brought out strength in me that I didn’t know that I had. Nora’s death did the same thing. Our daughters have gifted me by allowing me to see my strengths more clearly (as well as my weaknesses, but that’s the subject of another reflection!).

Tuesday, June 3^rd brought more changes in Nora. She seemed more tired, less aware, more agitated if we didn’t keep on top of the medicine regimen. We had called family and a few close friends, inviting anyone who wanted to come and say goodbye to do so. Some of our siblings chose to savor their memories of Nora outside of the hospital, and we respected that. Others wanted to see her again and we wanted to honor that choice as well. By about 10pm Tuesday evening the last visitors had left. It had been a big day for us and Nora and we were ready to turn our attention fully to her care. She had been aware of some of the visitors that day, particularly when baby Phoebe visited in the afternoon. But soon after that she seemed to draw more into herself. By the time her cousins Joshua and Sabrina came she really was not very alert or responsive (though she would still express needs as they arose).

Soon after everyone left, Jason and I talked about how we wanted to approach Nora’s care from here on out. We had agreed a few days earlier that as long as Nora was enjoying quality time with people (and all her little stuffed animal friends and baby toys), we wanted to make it possible for her to do that with as much ease and comfort as possible. If we noticed that things were changing such that she was not able to enjoy life, then we wanted to be responsive to that. One of our care providers at UVA said to us at one point that sometimes what we are doing when we care for people is not prolonging their life but in fact we are prolonging their death. Jason and I were in agreement that we saw no reason for us to prolong Nora’s death. While we wanted her presence with us, it felt selfish and not in her interest to keep her breathing once her quality of life had diminished substantially.

As we rearranged Nora’s room to be more conducive to being close to her, I can’t say that Jason or I knew that Nora would die that night. However, I think we both sensed that the end was nearing. It might sound crazy and there is really no good way to say, but I mentioned to Jason that I really liked birthing our children at night and that if I had to make such an awful choice that I think I would “like” death better at night too, when the rest of the world around us is sleeping, more or less unaware of the journey to a beginning or an end that we are on. And in a hospital setting the difference between night and day is really a night and day difference. It is quieter (no one coming in to bring an unappetizing food tray or loudly changing our multiple trash bags, no teams of rounding doctors, residents and medical students, no one calling to check on us or stopping by to visit) and naturally more calm; time seems to move at a slower pace.

We had both noticed the changes in Nora that day and what seemed to be more rapid progression towards needing more and more oxygen and more and more medication to keep her oxygen levels up and her body and mind comfortable and at ease. We chose to increase her medication for anxiety and pain, knowing what that meant (that our time of her being alert and fully aware of our presence with her was probably over). At the same time we also chose to cover the monitors and have them turn all the alarms off in our room so that we could focus on Nora and not a number. She had been up to at least 3 liters of high flow oxygen for a good while now and had been pulling at her nasal cannula more, which we figured may have been a sign of irritation with the higher flow of oxygen. So in addition to being more liberal in using medication for her comfort, we also bumped her oxygen down slowly.

Then we did our best to savor our time with her, as much as you can savor what you know are likely your last hours with your baby. 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 and that Kali loved her and that so many other people loved her too, even those that wanted so much to meet her. All the while she held onto her binky and fiddled with it, as she had done consistently 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.

Each time we went to the door our nurse came to us in minutes, though never coming before she saw us beckon. We would ask her what the monitor was saying, and clearly the progression was rapid as she went from hanging out in the 70’s to 60’s to 30’s and downward. Was it helpful to know? Is it helpful to know when one is in labor and you are at 3, 4, 7, 9 centimeters? Did it better prepare us for the end?

Sometime early in the morning we had given Nora her first dose of morphine through the feeding tube. It wasn’t long after that that the pump alarm went off. She was on such a small amount of milk at that point (about 17cc’s/hour) and so the medicine and food was going in pretty slowly. Well maybe it had never been tried before, but clearly morphine and breastmilk don’t mix so well. The milk had curdled or reacted in some way that made it thicken to the extent that it had completely clogged the line. There was no flushing it and getting it restarted and at that point it didn’t seem necessary or helpful. So Nora was free of one tube! Thankfully they had very small doses of medication that could be given orally and absorbed through the skin of the mouth for very quick relief.

The final time her nurse, Molly, came in she told us that her blood oxygenation levels were in the teens. We knew that her heart could not work hard enough to keep her body going much longer. I wanted to hold her. I wanted her to be close. I wanted her to know that we were not abandoning her. 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 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.

Her breathing was labored and slowing down, but her body was relaxed. I was not so relaxed and at this point started relying pretty heavily on Jason to stay calm. It wasn’t that I thought he could make everything better. It wasn’t that I thought there was anything we could do to keep us from traveling this awful path. It would be painful, no doubt about it. When I was in labor with Kali I was 10 centimeters dilated and pushing and so scared about that “ring of fire” I had heard enough about to know I wanted to avoid. But there is really no way around it. You have to go through it. Nora had to cross over and I was going to feel and hear those last breaths.

Her body suddenly felt as if it had doubled in weight and she felt heavy in my arms for the first time in her life. I looked down and her eyes told me immediately that she was gone. It scared me. Her breath continued slowly, weakly, fading… I wasn’t prepared for this. Was she alive, was she dead? What does it mean to be alive, to have died? Clearly the little body I was holding was no longer inhabited by the little girl I knew and loved.

There have only been a few times in my life when I’ve been totally unaware of those around me, and not cared a bit what they thought of me. Thank goodness two of those times were the births of our daughters (It came in pretty handy right at the end of Nora’s birth when I was descended upon by doctors and residents, all of whom happened to be male and most of them looked a good bit younger than me). There in that room on 7 West of the same hospital in which she was born sobs wracked my body. I wanted her to live and I wanted her to die, to get this immediate excruciating pain for me over with. And then it was over. But I was scared to look at her again. I didn’t want my final memory of her to be her eyes, vacant of life and her personality and spirit. We laid her down on the mattress where she had spent her final night between us. We covered her with one of her little afghans.

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 little body. Was I abandoning her? Where was she? Maybe I was closer to her as I looked out at the storm, at the sky and the mountains and the rain and the lightning. I returned to her side, and looked at her as I stroked her feet and cried. After some time had passed I asked Jason what we should do – should we go tell them? He assured me that they knew; they had heard me (the sound only of a mother grieving the loss of her baby). However, they respected our process and did not come until we went to get them.

The next several hours were mostly a blur of activity and once again visitors. Though this time it was all the medical professionals coming to express their condolences and also grieve with us. Nora had clearly touched many lives and endeared herself to more than one nurse. And we had made friends too. Believe it or not, we miss them. I don’t miss the hospital. I don’t miss the machines and medicines. I don’t miss the food. I don’t miss the wastefulness. BUT I miss the people. They had shared with us some of the most intimate and painful moments of our life to this point. They hugged us, shed tears with us and talked about how special Nora had been. I imagine many of them will never look at a binky in the same way again after watching Nora interact with one.

Somewhere in there they came and took her body. We had more papers to sign. They brought back hand and foot prints for us and a lock of her hair. We started packing to go home. Going home?! Going home without Nora, for good. In some ways it felt like we were closing one chapter of our life and entering a new one. In some ways it felt just as unpredictable and scary as the last, just a whole lot simpler.

Letting go of Nora leaves me feeling empty inside. But there was some letting go that left me feeling relieved (slightly guilty for experiencing that sensation, but there it was nonetheless). I can’t say I was looking forward to continuing the application for Medicaid and SSI. The amount of medical paperwork we were accumulating had been baffling me for weeks already. I still hadn’t figured out the two home health companies we were working with and when I was to call them for what supplies. She had medicine that needed to be shipped to our home but I didn’t even remember where it was coming from. And the oxygen and the tubes and the sounds of the machines running… When was I going to actually learn to attach and detach her feeding tube without cringing or feeling faint. Crossing off appointments that were already scheduled for the summer felt strangely good and bad all at the same time. How could I hold all these feelings together? How do I continue to do that?

So birth and death. Both full of mystery. Both unpredictable. Both with the potential to be beautiful and awe-inspiring as well as scary and excruciatingly painful. I labored when I birthed Kali. And in many ways it felt we labored with Nora in the hours before she took her final breaths. Prior to Nora’s birth and death I had so much apprehension about experiencing these moments of my life in a large medical facility. But I’ve learned that a sacred and precious and protected space can be created anywhere.

At the end of a birth, you have a baby. It makes all the pain worth it. You soon forget how hard it was, or many of us may think harder and longer before embarking on the journey all over again. But what about the death of a baby? What do we cling to now? Is there anything redemptive? Can we keep her alive with our memories of her? Can we honor her by the way we live from here on out?

thoughts from Keezletwon

I am home alone this weekend getting a home improvement project done while Janelle and Kali are with Janelle’s mom in WVA at the Mountain House, preparing for “Curriculum Camp”, which is an academic planning retreat involving the faculty and other leadership from Janelle’s workplace. Since the tile mortar needs some hours to set up before I can proceed to the next step, I’ll take the evening to write a little about what’s on my mind concerning this point in our family’s history. This will be more of a reflection than a bulletin; that is to say, there is really no news to share with you per se.

We are all still (understandably) reeling from the loss of Nora. Yes, of course she lives on in all our memories and in the many lives she touched, and that’s a very real comfort. Still she’s not here to hold, and I miss her. I won’t go into detail about exactly what I miss about her. Like Kali, I miss all the things I used to do with Nora (except the feeding tube). I still can’t really believe that she, having been so present with us, is now gone from us. My grieving process right now involves lots of introversion, which is not surprising for those of you familiar with my personality on a daily basis. I’m not sure what to say about where I find solace, except that getting outside and ruminating on the master plan for our property seems to help distract me, and having meaningful work to do helps, provided I manage to actually get to the task as opposed to wandering aimlessly through the house. But what seems to help the most when I really miss her is just 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. It is a comfort to know that I will always have this bank of memories to return to.

Sometimes I try to find comfort by saying to myself, “she would have led a very difficult life.” However, one of the adjustments I’ve started to make is the realization that it is probably fruitless to conjecture about what her life “would have been like.” This is something that separates our grieving from “normal” grieving. What I mean to say is that if someone is lost to accident or infection or some other acute illness, part of the grieving process is to think what would have been, had the loved one made it through. For Nora, there was no “making it through.” She died of natural causes, at seven months of age. I’m not sure I have a frame of reference for that truth. I think that once some time passes, that will begin to be an important part of our making peace with this whole experience. For now it’s sort of emotionally perplexing. What I do see more and more clearly, looking back, is that Nora had probably been working against her cardiopulmonary symptoms almost from day one, or perhaps even before 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 for the tasks until it couldn’t be done anymore. Life was full of wonder and adventure for her, as it is for every baby. I have said repeatedly since her passing that 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 developing, and still learning my place in the universe with wide-eyed wonder.

I’ve been trying to watch Kali closely this week to see if I can begin to plumb her emotional depths, trying to ascertain whether she’s dealing with things in a healthy way (whatever that might be). Hour by hour it would be pretty hard to tell. She’s pursuing all her usual interests, and seems to have plenty of zest for life. Phew! However, when we look back at the way a whole day or few days play out with her, it is apparent that she’s experiencing some of the same fragility of emotions and perhaps some of the directionlessness that Janelle and I feel. Around the time of packing up and leaving for the Mountain House, Kali experienced a fairly significant meltdown, and Janelle, intuitive and compassionate mother that she is, crawled in bed with her and cuddled her while she sobbed. Transitions are a challenge for anyone, and Kali tends to get fragile around them anyway, but clearly in this case the specific situation was simply a trigger to expressing, and hopefully releasing, feelings that came from a deeper place. I wish I could understand her better, and I worry about her, but for now I am satisfied that she feels safe in her process, and that it is heartbreakingly healthy. It is right for things not to be right for her. She is perfectly justified in feeling confused, disoriented, sad, and frustrated, when she does feel those things. That’s how I feel sometimes too. But it’s hard to watch her go through it. I hope so much that she feels deeply o.k. and safe in our family, that we support her totally.

It seems we will be able to dedicate some concentrated time to family building. A cottage on Cape Charles has been generously offered to us for a few days, and we are counting on some quality time with inflatable toys in the bay. Following that we plan to travel to PA to spend some time with my parents, whose home we have been unable to visit for over a year. They have a pool, so Kali should get her fill of both salty and chloriney water on this vacation. We are all looking forward to the time away together, while keeping our fingers crossed regarding the transitions.

I am still thankfully not experiencing any regret or anger about the process of Nora’s death. Her death, like our grieving process, is one of those things that, while being extremely hard to accept, was, for her, almost definitely (can I even say it?) the right thing. Even though we had hoped for something so different, I still feel and know that this is one of those things that just happens and which becomes incorporated into our personal and family histories, and can even in the end make some very positive contributions to our individual and shared character. But that’s the long view, which, while helpful, does not exempt us from the now. Right now we all miss her in our own ways, and we’re each struggling to know how to relate to each other in this new family, the family where one member is a memory.

West Virginia without Nora...

The rain is falling gently outside and the thunder is rumbling around us. Kali and I arrived in Harman, West Virginia with my Mom yesterday afternoon and will be here until late on Tuesday. Each year after the Summer Peacebuilding Institute/SPI ends, we hold a “curriculum camp” with the faculty from my work at CJP (the Center for Justice & Peacebuilding) to review the past year and think ahead to the coming one(s). In the past I’ve done all of the logistics and food preparation and escaped the meetings and taking minutes! However, as my job shifts and changes, it feels more essential that I also take part in the meetings. So, as you can imagine, as this year’s faculty retreat was approaching I was having a hard time imaging how I was going to do all the food preparation, take care of Kali and Nora and be part in the meetings. Even with Jason in tow, this seemed like a big stretch. So, as she has done MANY times in the past, Mom came to our rescue. She would come along to help with food and Kali , while Jason cared for Nora. As it turns out, Mom is here to help with food and with Kali as previously planned and Jason is at home in a very empty and quiet home, other than the noise he is making as he works on the final pieces of the front room construction project.

Mom, Kali and I decided to come Friday and do most of our food preparation together, and to have 2 quiet days here together in which I could focus primarily on lavishing love and my undivided attention on Kali. She’d like me to not be taking a break to type this letter and is energetically chattering around me while she “buys” things from the Mountain House to play with. She has been quite a “mommy’s girl” and we have spent a good deal of time at the swings in the last 24 hours. Because Mom is about twice as efficient as I am in the kitchen (i.e. when I came downstairs at 8am this morning she already had all three kinds of rolls mixed up and most shaped and ready to go in the oven), I’ve had the luxury of slowing down for the first time since Nora’s death.

Sometimes slowing down feels like a luxury, and sometimes the emotions that tumble around inside of me feel uncomfortable enough that staying busy is more tempting. It feels strange to be here without Nora. This was likely going to be Nora’s first trip (other than the road she traveled between our home and Charlottesville). While, no doubt, I was wondering how we were going to deal with the complexity of her care and all the oxygen equipment, it feels sad to not be introducing her to this place that has already housed so many special memories and lots of fun for Kali.

As I watched pieces of the memorial service DVD with Kali this morning, I almost felt relieved to feel fresh tears streaming down my face. It’s the first time I’ve cried much since the memorial service. Most of the time, my feelings are not so clear or straightforward to me. It’s almost a relief when I feel one emotion at a time – even if that emotion is a huge wave of sadness and grief.

Thursday evening Jason, Kali and I attended the final community meal and dance for SPI. It was the only one, out of the four, that we were able to participate in. I had mixed feelings going as I’m not feeling real up for large social gatherings. But as I sat there and watched Kali dance with persons from around the world, I felt genuinely happy and blessed. The thought of Kali having memories of dancing next to CJP alumni Ali Gohar from Pakistan makes me feel like her childhood is full of richness. For a moment I got a glimpse of things feeling right in the world and it felt precious.

Then the next day when we were trying to pack and get ready for our trip and Kali started melting down about everything and anything and her emotions just seemed to be bubbling up from some deep place in her, I felt such a level of loss and sadness. I wondered how we’d ever be able to put the pieces of our lives back together again.

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. Our lives had centered around her care and needs for 10 months. All of a sudden that came to a grinding halt. If it weren’t for the flowers around the house, the photos of a sweet and tiny baby, the remaining baby things sprinkled throughout the house, the milk starting to flow from my breasts when thinking about her, and the ache and emptiness we all feel inside at times, it could almost feel as if the 10 months we just lived through was just a blip on the screen of our life’s journey – here and gone again. Sometimes it would almost be easier to approach it that way; to try to make things go back to “normal.” To somehow forget that we had ever expanded our family from 3 to 4…

I’ve found that that is impossible and not desirable either. I want to make sure that Nora’s life was not in vain. I want to do my part to make our memories of her stay alive and the lessons she taught us ever present. And Kali will help with that. Nora is still so much a part of our conversations, and Kali often picks purple things for herself and orange things for Nora. But I think it doesn’t sink in to us a lot of the time that Nora is really not coming back. Maybe that is some kind of self preservation technique, because we miss her. Maybe I’m not quite ready for it all to sink in fully.

Over the last week I’ve told Jason I have about four different things I want to explore in writing. I want to spend some time reflecting on the ways that the births of our two daughters and Nora’s death were similar and different (and I could do a more light-hearted version on the comparisons of planning a wedding and a memorial service). I also told Jason, I had another update bubbling inside with a title of “we are not perfect.”

Sometimes it feels crazy to me that there are so many people sending words of encouragement, notes of amazement at Jason and I as people and parents, and sharing with us ways that our journey with Nora has enriched there lives and enabled them to be better people. I’m so grateful! But how is it that all that can happen during a time in my life when I’ve never felt more out of control, more in need of help and unable to take care of my family and house and work, and struggled to have patience for myself and my family members. When I read emails about friends savoring their children more and feeling less impatient when parenting requires much of them including disrupted sleep, I smile and feel a bit ashamed at all the times when I felt anything but grateful to be up for the sixth time in one night.

So then I start to wonder what people are seeing in me/us that I’m not seeing. Or if we are putting on a front of some kind and haven’t been authentic enough in our writing. Or if what people are drawn to is not some level of perfection that they see in our walk but in our humanness. Whatever it is, the emails and cards have been a huge source of support and encouragement. And whether or not what others are noting about us and the way we journeyed with Nora is completely accurate, it has strengthened us and helped us through some dark moments and I think also motivated us to be the best we can be for ourselves and each other during this time. So for that we are grateful!

The rain is still falling, Kali is now talking with her Daddy on the phone and I’m out of thoughts, at least ones that I know how to articulate. Love, Janelle

Memorial Service

Friends and family near and far,

Here you will find a promised update and various attachments for all, but particularly those unable to be with us on Saturday. While this isn’t our longest update, it is an email full of attachments. Just a quick note of explanation on the attachments:

1. Nora’s program – a scanned version of the program, because I wanted to include Aunt Christie’s beautiful original artwork!
2. Nora’s memorial service mom and dad – this is what my parents shared at the service which is a compilation of many of our updates and theirs sent over the past year or so.
3. Hiddley – our newest and very curious family member (explanation in update)
4. June 10 2008 final – an update from Jason
5. collage4 – just a very few pictures of the service (we may upload more online so we don’t clog your inbox with too many photos but that hasn’t happened yet)

In addition you are welcome to see some of my dad’s last photos of Nora online at: http://picasaweb.google.com/hesemyers/VAWVMayJune2008

And lastly Aunt Anna has put the slide show she did on youtube and you can view it at: http://www.youtube.com/watch?v=wK_Oy2AsXX4

Jason and I know that it will be important for us to continue writing as we journey through grief and change and all that comes with the unknown territory we find ourselves in now. I can’t quite describe the feeling I had today cutting out my own baby daughter’s obituary.

However, the reflections coming in the weeks and months ahead will most likely broaden to include various aspects of our life as a family. We feel we have drawn many people into our journey over the past number of months and we feel blessed by our expanded community (some of you whom we have never met but hope to). You have blessed us by sharing with us aspects of your own journeys. We have been strengthened by you and for that we are so grateful. We are happy to continue sharing our updates and reflections for any who wish to read them.

Love and blessings for the journey, Janelle

Curious Hiddley

Heartfelt thanks to all who attended Nora’s memorial service on Saturday the 7^th of June, and all who were there with us in spirit. It was a wonder to us to see so many friends and supporters from so many different facets of our community of connections. Some friends traveled substantially to be there, and that meant a lot. We also felt lots of gratefulness towards all those who participated in the service, and we regret that we couldn’t include everyone who we would like to have, due to time considerations and the short-notice nature of the event. Janelle and I commented to each other that in some ways it felt like a wedding except that we had only three days for planning (and many different emotions associated). Still it was a very meaningful event for us.

One of the cards we’ve received in recognition of our family’s loss of Nora’s presence stated that those who have lost a loved one know that the real grieving starts after everyone goes home and everyone goes back to normal life except the bereft family. That seems to be a useful approximation.

Fortunately for us, we are experiencing the transition from having people around to not having them around gradually, as my youngest sister Emily has been staying with us since the memorial service on Saturday. Her attentive care-giving for Kali during the day has been a relief to us as we try to get oriented to our new life. Janelle returned to work yesterday and is trying to be patient with herself as she starts the process of catching up and feels like she is working at half steam. Both Janelle and I have been experiencing what Janelle referred to as “blah” feelings yesterday and today. Being aware of the cauldron of emotion roiling under the surface, I suppose it is not surprising that it’s a little hard to feel just one thing at any given time. Humor helps, and so do the waves of sadness; there is comfort in feeling something distinctly.

I often think in metaphors, and I’ve been floundering for an appropriate one for this stage. Dorothy’s tornado? An earthquake? A long, communal dream? An exact metaphor eludes me, but here’s the circumstance: I feel as if our family has undergone some kind of hair-raising journey that has taken us far from where we were, with no chance of going back. Oddly, however, everything from our old life and homestead is more or less arranged as it was before except that it’s been shaken up, and we are coming into it as people who have been gone for a long, long time. Our task is to remember the patterns of living we used to employ to inhabit our life, and then re-employ or re-shape them to fit our current reality. Most things, including our relationships with each other, feel as if they need to be actively reaffirmed and mended. I’m very glad for Emily’s presence, because Janelle and I need a little more time before we engage this task fully.

Of course, we miss Nora like crazy. We think of her and the details of relating to her frequently throughout the day. For Janelle the ache is strong, and we both have a hard time believing we’ll never hold her again. For both of us, thoughts of Nora bring smiles and warm feelings along with the hurt. Janelle mentioned to me last night that though it sounds unbelievable, she feels as if she is going to start to look back on our last stay in the hospital with sweetness. The fact is, circumstances at the hospital made it such that we ended up having long hours of joint quality time with Nora, with medical support that reduced the sense of anxious responsibility we’d had at home for the long months of Nora’s growth restriction and subsequent pulmonary hypertension diagnosis.

Kali misses her, too. Getting her to talk about it straightforwardly isn’t exactly easy, and we don’t push her to do it. But those comments that do come out and her fragile emotions indicate that she’s feeling the 4 ¾ year-old version of what we are. She has said, in the context of one of the precious discussions we have had, “I miss everything I used to do with Nora.” This is heartbreaking for us, but clearly healthy. If there is anything we have learned from this, it is that loving is worth it, even with all the pain that can accompany it. If we can locate the strength to continue facing the difficult facts of our recent past with straightforward openness, maybe Kali will absorb that lesson deeply into her being.

Thank goodness for Curious Hiddley. Most of you have not heard of this little fellow yet, if I remember correctly. He is a white lop-eared rabbit with brown spots that has just joined our homestead, and has quickly hopped and nibbled his way into our hearts. We had been planning to get Kali a rabbit (vegetarian pet!) for nearly a year now as a “big sister” present, and the time had never really been right, though we had visited the SPCA once to check out options. One of the first things Janelle and I had decided on Wednesday, the day of Nora’s death, was that the search for a rabbit would move to the front burner. Wednesday afternoon Kali, my sister Christie and I headed out to the SPCA to see what had shown up since last time, and were pleased to discover a stray, sweet-tempered lop. After making a few arrangements at home and picking up some fresh rabbit feed, we were ready to pick him up Thursday. He was an immediate success, and he and Kali have spent long hours together in the portable “play pen” I made for them. By getting Kali her first non-fish pet so shortly after Nora’s death, we were not attempting to fill the love void in Kali’s or our hearts, but rather to provide something positive to focus on when a distraction is needed. Of course we fret that something tragic will happen to old Curious H. (as Christie calls him), rabbits being notoriously finicky about staying alive, but if we allow fear of tragedy to dictate our lives then we haven’t learned anything from this long tornado ride we’ve been on.

So things will be hard, of course, and I don’t wish to minimize that. Reading your kind cards and messages of support over the months helps. Looking at pictures helps. Remembering Nora’s smile helps. Talking about it helps. Writing about it helps.

Thanks for listening, Jason

Memorial Service details

Thanks for the support pouring in at us from all directions. We are most grateful! And incredibly tired!! It is hard to believe that it has not even been a day since Nora died. It feels like an eternity since I cradled her in my arms this morning and my arms ache to hold her. The grief comes in big waves. Coming home felt so wrong and so right all at the same time. Sharing the news with Kali was more heart wrenching that I could have imagined. Jason and I keep having many moments of expecting her to be here and then it hits us that she is not hear. Each room in our home is peppered with reminders of her presence.

This update is going to be much more regarding the upcoming memorial service and I’m sorry for using this venue to share this but it feels important to share the news in the only outlet we know of that will get to all those who have been following Nora’s journey in life and death. Here’s the scoop.

We will be holding a service to celebrate Nora’s life this Saturday, June 7 at 3:30pm in Martin Chapel of the Seminary Building at Eastern Mennonite University. A music prelude will begin around 3pm. If any of you will be coming in from out of town and need lodging, please let us know as we have had a number of generous offers from friends to provide lodging as needed.

Following the service, we welcome you to join us for refreshments. And many of you have asked if there are things you can get for us or do. Here’s an idea. We are going to be a bit risky and try a “mini-potluck” style for refreshments. You are welcome to bring along some finger foods to share if you would like (ideas may include: veggie try, fruit, cheese and crackers, nuts, mini-sandwiches, etc…) Plates, napkins and cold drinks will be provided.

Additionally we request that in lieu of flowers you consider making a contribution to Hope International Development Agency which has been working in Myanmar with the survivors of the cyclone there. The Center for Justice & Peacebuilding where Janelle works has a number of alumni of their programs working in Myanmar and as we journeyed with Nora the stories of the suffering in Myanmar brought sadness and perspective. Donations can be given online at http://www.hope-international.com/ and you can read more about their work in Myanmar as well – see the box on the far right top.

I think that is all for now or at least all I can think of. I knew that I was tired when I started falling asleep when leaving a voicemail earlier this evening. Janelle