Wild, Wonderful, West Virginia

This is Jason writing, and I will hope to explain the meanings of some of the photos to be found at:

http://picasaweb.google.com/bennerj8/WVATripOctober1619#

by way of briefly recounting our weekend. A preliminary bit of information to know is that there is a reason that Kali's visage looks a tad distorted (it seems only extremely familiar or visually perceptive persons are capable of noticing this). While preparing a load of old cruddy packing palettes and creosote (I think) timbers for the landfill on Wednesday morning, we inadvertently disturbed a yellow jacket burrow, resulting in Kali getting stung on the hairline of her forehead. Parents hate that kind of stuff. I'm pleased to see, however, that after the initial terror stage, she seems to take that kind of discomfort pretty well in stride.

No pun intended. What I mean is that Kali and her swollen forehead "strided" all the way up to the lookout deck of the Seneca Rocks recreation area. That involves 1.5 miles of hiking up (and another 1.5 miles down), with an accumulated vertical ascent of 1,000 feet. I'm not saying she didn't complain at all...she just didn't complain about her forehead. Really, though, she did very, very well for her age (only requesting to be carried once on our descent after tripping over a root).

For those of you who don't know, Seneca Rocks is just over the Allegheny Mountain from Harman, WV, where Janelle's mom was raised. Mom and Dad Myers keep a home there that has been a place of respite and hope for many. We were there this weekend with our good friends for a weekend of fun, food, swings, food, philosophizing, food, mutual support, food, mountain comforts, and food. We always eat well with their family.

The photos of us digging in the dirt document the placement of four tulip bulbs of a purple variety (Kali was a bit awe-struck at having happened upon the package in the Rockingham Co-op here in town a few weeks back) around the Service Berry tree that we planted in the yard of the Mountain House this summer in memory of Nora. Assuming the squirrels don't make short work of the bulbs, we look forward to their blooming in spring.

There were ample opportunities, most especially while hiking Seneca at the peak of the autumn leaf display, to realize just how different this treasured time would have been if Nora were still with us. It has also struck both Janelle and I how it feels like it has been two years since we have really been able to notice the full transformation of the outdoors in the fall (as Janelle was on bed rest in October and we spent November in the NICU).

As we prepare for Nora's first birthday coming up this October 30th, we can't help but feel some gratefulness for our freedom of movement, even while still missing her keenly. I don't know if "carefree" can ever describe our family again, simply because of the complicated emotions our journey of love and loss inevitably brings. In a way, that is a gift, since I feel the other side of that coin is that we don't take our health or freedom for granted nearly the way we used to. Always present in our minds, too, are those many families who are still searching out their own best paths as they live their days with unresolved questions about their beloved's genetic condition and potentials. While we don't have any magic to offer them, we feel compelled to apply what we've learned about community support in the face of living tragedy in making ourselves a practical resource for them.

A good weekend, and hopefully helpful in rejuvenating us for the Palliative Care retreat coming up soon, as well as Nora's birthday and a presentation we're making at our church Nov. 9, concerning our family's journey.

Giving blood!

Jason and Kali are out trying to successfully get all the things on my grocery list for me. Since their list of errands has delayed their arrival home, I lit my candle in silence and sat in our hammock alone for awhile. What I'm feeling most this evening is gratefulness for the ways Nora's life and my journey of parenting her continues to provide me with strength.

For example, I gave blood today. Those that don't know me well may think this seems like a petty example. For those that grew up with me or know me well, it is huge! Nora's life proved to me time and time again that I can do things I never imagined I could do. And that there are many gifts to be found even in the pain of it. Giving blood is hardly painful, but I still manage to almost faint every time and I do not have a history of putting myself through that process voluntarily (I attempted it one time over a decade ago when I was a student). Each year when EMU has their annual blood drive, I have a twinge of guilt and wish I had traveled to some country that would nix me off the list of possible donors. In the past my tendency towards low iron levels would also offer me an easy escape. Today I cleared all hurdles with flying colors, with no excuse other than my fear (not of the needle as much as the embarrassment of passing out).

Nora was almost constantly on my mind. Thinking of her struggle for life and her determination to give it all that she had. The way caring for her consumed so much of what I had to offer. The way it wasn't enough. And yet all I can do is give what I can. Hopefully it will make a difference to someone, somewhere...

A few things

The days have been full (of activity and emotion) for our family lately. The next several weeks involve many opportunities for reflecting and processing this past year and for that we are thankful.

We are preparing for our participation in a retreat at UVA on pediatric palliative care later this month (days before Nora's first birthday). We feel excited about this opportunity and my email correspondence with the organizer of the event has only heightened that. If you are interested in learning more there are two links below to short radio clips:

Hear about IPPC on National Public Radio:
IPPC Retreat June 2007:
   Go to http://www.mpbn.net/search/ 
   Type "palliative" as keyword
   Choose "Retreat Focuses on Palliative Care"
 IPPC Retreat June 2004:
   Go to http://www.here-now.org/shows/2004/08/20040823.asp 
   Scroll to "Palliative Care for Children"

Also, since Jason and I haven't done as much writing ourselves recently (we are, however, working on reading through all our updates in preparation for sharing with our church community in early November), I thought I'd also pass on another link. This was shared with me today and resonated in many ways. Saturday, in a few rare alone hours, I felt overcome with the grief of her absence coupled with such an intense gratefulness for the ways I feel she has made me a better person and for the many lessons I continue to carry with me.

http://www.npr.org/templates/story/story.php?storyId=95536681&sc=emaf

And lastly, we also just learned that this Wednesday is a day set aside to recognize the lives of infants who have died. You are welcome to join many others in lighting a candle at 7pm in memory of babies who have died. (More about this event can be found online at http://www.october15th.com/)

Reclaiming sundays

Yesterday marked 4 months since we said goodbye to Nora. I guess it marks the passage of time that it was not until this morning that I thought about the date. It was a day for me that ended with a priceless time. I took a meal to close friends who recently had a little girl (and I went all by myself!). We were able to give them a number of Nora's things to use and had intentionally given them things, knowing we might get to see them in use. It felt so sad and good to have her little body snuggled against mine in one of Nora's green outfits.

I had another striking moment this week. I'm auditing a CJP class this Fall and on Thursday we were in small groups discussing our family geneograms when all of a sudden a father walked by with a little baby in a front pack. It was one of those moments that almost took my breath away. It was a couple that we knew from college but that we had had very little interaction with until we were at UVA the last time before Nora died. They had just had a little girl who came too early and was in the NICU. They named her Nora. I hadn't seen them since and somehow, even though I knew they had been on their way home, it shocked me to see him walking her like a "normal" daddy with his baby....

Today, in many ways, was very much a sabbath day for our family. For the past 3 years, Sunday has often been just another work day, particularly for Jason, as we have tried to make progress on our home construction project. Now that the front walk is complete and the house (phase #1) is all but done, the urgent need to make the most of every minute of good quality work time has diminished. For that we are very grateful! Yet is is hard to retrain our minds to be okay with not making the most of every good weather day (or hour) to get something done around the house or property.

Jason and I verbalized today that we are both ready to get back to setting Sundays aside, to reclaim a day of rest from our normal routines. I don't necessarily feel like there is anything intrinsically sacred about Sunday in particular but it kind of feels like tithing: I also don't feel like there is anything magic about 10-15% giving. It's more what is behind it. Valuing giving. Valuing our time and relationships. So I'm putting it here for all to see who read our musings! You can help hold us accountable.

Part of our day included taking lots of pictures of Kali. She was too cute not to capture! We then went for a family "trash walk" where we pick up trash and recycling along the road. When I go for a walk or run with Kali she seldom goes more than 1/4 mile before saying she is tired and ready to ride in the jogger. Well today was just another example of how much more she can do when her mind is occupied with another task. She walked over 2 1/2 miles picking up trash and recycling, jabbering constantly and lunging for leaves and grass and all sorts of "non-trash" items. We then ended our evening with some games. She's been a lot of fun and she continues to bring lots of laughter into our home!!

Visit to the triplets

In Jason's post last night he didn't mention the highlight of Kali and I's day yesterday. After not seeing them for about a month we visited the triplets yesterday. They are on the verge of being very mobile. What fun! And the need for serious baby-proofing is right around the corner. Here's a few captured moments. When I first arrive at their home I don't know where to look first. It's almost overwhelmingly cute to have all three of them interacting with the world around them. Kali is also clearly smitten by them, but has a very clear affinity towards one of the little girls. Can't say I'm all that thrilled with her clear show of favorites but I'm told it is a developmental stage. There's a lot of those these days to try to keep up with (and in my case not get overly uptight about)!!! But that is a subject for another reflection.

Movie Night

There are times when I would like to think that our family, while we have intentionally chosen some limited departures from the mainstream, could behave more or less normally if we so chose.

And then along comes a movie night and I am obliged to come to terms with the reality that we really, really don't do "normal" very well.

It started out innocently enough. Janelle got the hankering to watch a certain movie that had been recommended to her by an acquaintance. Supposedly it was all about the working out of complicated family relationships in a holiday atmosphere (likely not scary). We decided to rent the DVD and watch it on the computer as a quiet evening family activity, so Janelle and Kali dropped by Blockbuster on the way home today. While the helpful staff manufactured a rental card for Janelle, she went to find the movie.

They didn't have it, of course. Janelle found herself wandering through the racks of DVDs with a few harmless-looking comedies in hand, and then worrying about how to know whether they would make a good family activity, and then succombing to her insecurity in the unfamiliar environment and putting them all back. They could have aborted mission, and we could have planned instead to attend a game night that was organized by our church this evening. But by then Kali had become fairly attached to the notion of renting a Curious George movie along with the adult one, so that when I arrived home in the evening I was greeted by the sight of my daughter fondly caressing a DVD, and my wife, empty-handed, smiling sheepishly.

After nearly needing to cancel the event due to excessive pestering during dinner by a five-year-old over-eager would-be movie-goer, we finally settled down to watch the thing. Janelle inserted the disk into her trusty laptop, which was promptly taken over by it. Seriously. Without asking, the DVD simply fired up the internet connection and introduced us to a slate of interactive Curious George games and promotional items. We searched in vain for some kind of instructions that might resemble the "play" buttons of our VCR youths, but to no avail. Eventually Janelle tried zeroing out of the program the DVD had chosen, and tried instead to play the DVD with the program that has worked in the past for older, less aggressive forms of the technology.

Surprisingly, it started playing something. Previews, which turned out to be unskippable, so far as we could learn. But then, at long last, an icon consisting of a stylized word "Play" appeared on the screen. Ah, familiarity. With relief it was clicked on.

The first minutes of the movie were relatively charming and, for the adults, predictable. Just what we needed. Kali got lots of good giggles out of silly George doing his clever tricks in the jungle. But when George, who had pursued the Man with the Yellow Hat all the way to his home in a large American city, seemed to be having trouble keeping up with him, we noticed the first signs that our daughter's tenderness and lack of exposure to Hollywood conventions were causing her some distress. We noticed this because she began wailing.

After a few wailing episodes followed by reassurance from us that the screenwriters would surely never let George and his friend get separated for long, or let any other manner of truly damaging calamity ever happen to George or anybody else for very long, we stared unbelievingly as the action on the screen stuttered and then stopped cold. The temptation was strong to scrap the whole thing, but by then I had felt that this was a good lesson for Kali in learning to cope with intense feelings while continuing to function. She seemed game, and I hated to quit on her. We closed the program and re-opened it, fast-forwarding through those previews, and then skipping ahead through the story until we got back to the spot we had left from. As we settled back into our comfortable positions, glad that the computer was working again, the action began stuttering again at, wouldn't you know it, the exact same spot. Oh. The DVD must have a scratch.

I think it was after restarting the DVD the third or fourth time that we realized we could skip past the scratch, missing only a little action. For the next three hours, we watched little chunks of the Curious George movie punctuated by program restarts and wailing/reassuring episodes. The most peaceful thing we did all evening was to take a little exasperated break to make popcorn. This was turning out to be a good lesson for Janelle and I in coping with intense feelings while attempting to keep the computer and our daughter functioning.

In the end, which we were just barely able to cajole the computer into showing us, everything turned out just the way we had told Kali it would, of which we were glad. Kali seemed glad, too. But while she was sitting on the potty after it was all over, we heard from the next room her little quavery voice proposing that since she didn't think she'd be able to remember not to be scared even though she already knows how it turns out, maybe we wouldn't watch it again. She needn't have worried.

Tomorrow we have a busy day planned. In the morning we're going to bustle around for a while at our various chores and tasks, including moving Curious Hiddley (Kali's rabbit) into our "tower" for the winter, me cleaning up some of the lumber acquired during our solar greenhouse demolition project for use in building a woodshed, meal preparation, then possibly being visited by a friend who will be in town, then taking a meal to some other friends who have recently had a baby, and a few other things I'm sure I'm forgetting about. This is, for me, a satisfying (even if a little busy) kind of day. It is also good entertainment for all three of us, and suits us very well. I guess most people would, given a choice, prefer to watch a movie. What I can't tell is whether we experience that choice differently because of earlier decisions we have made concerning our lifestyle and priorities, or whether we are intrinsically distinct from the majority of society. In any case, it's clear that watching movies is not a skill we currently possess as a family. I don't mind that in the least. Seeing Kali's tenderhearted concern for hapless George warmed me deeply. I do not mind exposing her to Hollywood's antics, but to see her become jaded to characters in peril would be sad for me. She is a person who keeps a constant awareness of the people around her, and I think she's very perceptive about their emotional welfare. I am keen to honor that contour of her character by noting it appreciatively to her and also by making sure the space she lives in allows her to be molded by that sensibility in positive ways. That is to say that I think moderated sheltering is not always a bad thing.

I suppose one could worry that, having been raised by parents who prefer to live somewhat on the fringes of society, Kali will be unprepared to face life among her peers. From time to time that worry does crop up in my mind. We welcome your opinions (you can leave comments on our blog or you can contact us any other way) on this or other subjects, especially concerning parenting. Mostly, though, I'm not worried. It's not hard to learn to watch movies later, and if you don't, does it really matter? I want Kali to grow up with the kinds of skills adults have a hard time learning if they don't emerge from childhood with them intact: empathy, respect, awareness, self-respect, creative confidence, intrinsic motivation, curiosity, courage, awe, intimacy, inner quiet (among others). In no way do I feel I fully comprehend the ways in which these skills are acquired or preserved in children, but I do feel Kali is demonstrating, in her own ways, that she has a reasonably good start on at least some of these, and I am so proud of her--and our family that doesn't know how to watch movies.

BUTTERFLY

I have an answer from our September 18th question! YES, a butterfly did in fact emerge. Yesterday, October 1st while Jason and Kali were in the Rocking R hardware our butterfly emerged and was sitting on a bag when they returned to the car. Kali had wanted to take it to school and Jason suggested that they leave it there overnight. Kali was insistent upon bringing it home. Smart girl!

I don't know that I've ever been able to watch a monarch butterfly that up close. We took it to the garden and our marigold flowers and left it for the night after watching it open and close its beautiful wings. Today when Kali and Jason checked it was no where to be found.

Two days ago I was about to throw the bouquet in the compost. I thought it wasn't going to hatch and thought maybe it was rotting. Then when I looked closer I realized that it was in fact doing nothing of the sort. The chrysalis was changed from green in color to clear and so we could see the wing patterns from the outside. Amazing!