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