Jason's birthday

It's "happy minute" (11:11pm) as I write. I felt happier at most of the other minutes of the day than I do at once again being up at this hour, but it just hasn't felt like there has been an overabundance of minutes in the day... Overall it was a wonderful day today. I've determined over the last number of years that I tend to enjoy Jason's birthday even more than mine. I'm such a sucker for getting wrapped up in expectations of what a birthday should be like, or thinking about how I'm going to make Jason's birthday special, that I don't tend to soak in the actual day of my birth all that well. But I sure enjoy the day after. Maybe I just enjoy spending a good part of the day in the kitchen. Kali enjoyed helping to craft Daddy's birthday menus. Of course she was quite certain she knew just what Daddy would want to eat, but boy did some of her suggestions sound like her favorites. :)

Jason thoroughly enjoyed spending a good part of his day with his hands in dirt. Kali and I joined him long enough to help him plant garlic (which he has determined he hopes to make a yearly tradition on his birthday). We also planted the first redbud tree, which will be part of a grove of trees. This was the first planting in an area that Jason dreams of being a memory garden in honor of Nora. And last we put "Kali's tree" that we took from our first apartment to our first home on E Wolfe St to our Fruit Farm Lane home in its final resting spot. It felt good to end the planting with her tree.

The other night Kali and I were laying in bed talking about writing books and dedicating them to people. I mentioned that if I ever wrote a book I would dedicate it to "Nora and Kali." She thought about this for a moment and then suggested that I could dedicate it to her and write it about Nora since "there's more news to tell." It was one of those precious windows into her little mind. It was clear that somewhere in her on some level she had absorbed the idea that Nora's life (and death) was more interesting or more news worthy than hers. She didn't say it with any bitterness that I could tell but I was grateful to be present to hear it spoken outloud.

I think sometimes in an effort to keep my memories of Nora alive in our home, I forget about how it may come across to Kali. In my mind it is pretty clear: Kali is healthy and growing and here with us. I can hug her and tell her I love her anytime. We play games together, read books, cook and bake together. Nora isn't here. It sure doesn't feel to me that she is the favored one in life. But Kali listens to everything. She hears us processing with each other. She listens to our phone calls even when she seems otherwise occupied. She catches my tears from time to time. And she soaks it all up.

So I find myself trying to verbalize more to her the ways she is special to me. The amazing new things she is doing (like her budding interest in photography). The ways she is growing and changing and what an important part of our family she is. Hopefully she will soak all that up too.

PA trip

This time last night we were just heading out of PA and homeward bound. Reading my last post I had to smile since once again we had an abbreviated weekend trip to PA! Some days I feel like there are just not enough hours in the day for all the life lessons coming my way right now. And I wanted to spend some time writing on my 30th birthday and have less than an hour of it left!! So a quick blog entry will have to do.

To make a long story short, we had a wonderful time with wonderful friends Friday evening and all day Saturday before coming home, arriving at 2am this morning. I've been journeying with a woman in the graduate program I work with who was expecting a little boy at the beginning of October and who I had agreed to accompany during the birth. He decided to come early and was born Saturday afternoon while we were still in PA. He is precious and healthy and is being warmly received and welcomed by our students from all over the world. It is an amazing thing to be part of, even as I can't help but experience some disappointment at missing his grand entrance.

The process of deciding when or if we should leave PA was actually a weighty one for me, layered with some of the ongoing complexity I feel as I tease out my home and family life and my work and community life. Striking a healthy and sustainable balance is not an overnight task. So I've added that to my list for my 31st year!

Every birthday has some firsts I imagine. This year had some that welcome and some that are painful. But Kali was so full of life and fun today, a wonderfully special gift. And today the most memorable first for me was getting a foot massage from Kali with the purple lotion and foot scrubber she picked out for my birthday. Of course, as she does everything, she had to do it in a manner outside the box. It was foot scrub, then a leg scrub, then a pant scrub. But I felt loved none-the-less!

Now, as I do every year, I'll pass the birthday celebrating to Jason! We all agreed to go ahead and cut into the funny cake pie today while it is was fresh but there is enough to enjoy tomorrow as well. Jason and I are hoping to get up early enough to enjoy a cup of coffee together on our porch before Kali is up and ready to go, go, go... It's likely to be possible as it looks like she might want to be the first one to wish her daddy a Happy Birthday at midnight!

(I should give Kali credit here for the photo of J and I. She is becoming quite the photographer!!)

Expensive advice!

After living with an odd, sporadic, annoying and highly mobile toothache for over a week my anxiety about the possibility of my teeth all of a sudden going into rapid decay and me ending up with dentures got the best of me and I made a dentist appointment (with a new dentist in hopes of having better experiences at the dentist and getting a second opinion on care for my two remaining baby teeth). Inevitably for the two days since making the appointment until this morning the ache had subsided somewhat, leaving me feeling somewhat silly sitting there answering the "and what has brought you to our office today?" question.

So I paid about $80 today to have a very kind dentist, who has my business for the foreseeable future, let me know that I'm under a fair amount of stress and that the toothache and aching sensation moving around through my teeth and gums is very likely one of the side affects of the emotional turmoil of the past year. I've been feeling a good deal of tension in my head and neck in the past several weeks so I guess I should have figured out my mouth could be affected as well. So I'm supposedly clenching, if not grinding, my teeth at night and I need to start practicing making sure my teeth are not touching each other during the day unless I'm talking or eating.

In other words, practice relaxing!!

We are leaving tomorrow morning after one final work meeting of the week for some practice in relaxing. The weather has changed the plans from camping to meeting good friends in PA and bunking at Mom and Dad's. As mom would say, "no great loss [not going camping] without some small gain [unexpectedly getting to tank up on Mommy and Daddy hugs!]."

Since I continue to find myself reflecting on these moments a year ago, I can't help but remember us anticipating a trip to PA to see my folks, for Jason to go fishing, for us to both celebrate our birthdays and attend the wedding of very good friends of ours. After a midwife appointment in which more concern was expressed regarding how our baby was doing in utero and after being encouraged not to travel, we made a much abbreviated trip home. We saw all of our parents in that short trip and yet found the celebration so colored by the uncertainties we were living our way through.

And I remember feeling like I couldn't do "anything" that I liked to do on my birthday because of being on bed rest. I'm a bit embarrassed to admit that piece. It's true that I like being active. I enjoy the freedom to walk and run. But over the past year that has become less of a "god" for me. I'm grateful for that.

So as I cross the threshold from my 20's to my 30's this weekend, I continue to take the lessons from the past year of my life, yearning to incorporate them more into daily living. It seems that sometimes they are hardest to apply in the most "normal" of times.

This First Time

It feels so strange, this
first time.
So many days
have passed, that dust
could gather on the shelf around
her image?
Taking up a fraction
of a sock, I dab and wipe away
accumulated haze.
I lose track
of the moments as I hold her
in my blurred and aching
gaze.

And a knowledge that
this unaccustomed sight -- left hand with
this framed photograph aloft,
the passing over,
under of a freshly dampened cloth -- will
come to join the steady
number of my lifetime's repetitious motions
enters my sore mind like it were swallowing
a stone.

Who can tell me? Who can
tell me now what it will mean
then - when the hand that lifts
the frame is frail,
the wrinkled rag that clears the dust
moves slowly, rocks with tremor - to
remember her?

Jason Myers-Benner
2008

Curious Hiddley, safe and sound!

Kali's cold hasn't really slowed her up at all these last few days. And I don't think her daddy has lost much sleep over it, nor has she. I, on the other hand, seem to be woken easily by her coughing and find it impossible to rest until the coughing fit subsides. So I'm giving up going back to bed until this one ceases. In her sleep she pushes her water cup away, doesn't rest well if I try to hold her so that she is more up right, and she seems more or less unbothered by the hacking. I guess on a very, very small scale, it's another situation in which I feel desperately like I should be able to do something to make it better but have yet to figure out what that might be. She's propped up, we have the humidifier running, and she is on her side. You aren't supposed to give cough syrup anymore, the honey we've tried didn't seem really effective and I'm not so into having honey sitting in her teeth all night anyway, and I'm not convinced the Vics rub did much good either. SO I'm just riding it out and figured it was a good moment to put a short story here that I've been meaning to write. This is one that hasn't been shared with Kali (and won't be for the foreseeable future), but which I want to have here for her to read years from now when I may not pull it to mind so easily.

As many know, Kali's bunny, Curious Hiddley, has been a wonderful addition to our family. He is easy going, easy to care for, gentle, interested in his surroundings, likes being petted and is a very enthusiastic recipient of treats of all kinds. We've enjoyed having him so much and feel like it has been great for Kali as well. It's not that she spends hours with him at any given time anymore, but she enjoys greeting him on her way to school, giving us "cleaning and filling up the water bottle" lessons, finding green treats for him, petting and talking with him and about him.

The other morning I was coming up to the house and for some reason was thinking about what I would tell Kali and how if something happened to Curious Hiddley. I really have no idea why this was on my mind but I had this sinking feeling as I thought about her experiencing another loss. As I came up to the back door I noticed that his pen door was swung wide open. I had a moment of panic and a thought process that I'm sure was much longer than the time allotted for it. I figured Jason had left him out in the outdoor pen the night before and I sure hoped he was fine there. The next minute I saw him laying IN his pen and I moved very quickly to the pen and shut the door before letting the full impact of what I had just discovered sink in.

The short of it is that Curious Hiddley's pen door was WIDE OPEN the whole night and 1. nothing got into the pen and bothered him and 2. he did not jump out to freedom. I'm still baffled by number 2 in particular. Often when we bring him snacks, I have to almost push him a bit farther in his pen because he is so eager to come right to the edge and see what we've found for him this time. When we take him to his outdoor pen, it's hard to keep a hold of him until he is safely inside the outdoor playpen. It baffles me that he turned up this opportunity for freedom. And I'm SO grateful.

I'd like to take from this experience that he is quite happy in his home and I hope that is the case. I also can't help but wonder if there was a little host of angel bunnies guarding the door, warning him that leaving would cause more heartache than it was worth. Whatever the reason, we are glad he is safely tucked in his cage tonight!!

Safari Park

Kali saw her first real live Zebra today!!! For her birthday Kristin gave her a coupon book, including a trip to the Safari Park located in Natural Bridge, VA (www.virginiasafaripark.com). Despite her cold, she was still eager to get on the road this morning with Carl, Kristin and Phoebe.

I've only heard snippets of their 8 hour adventure and seen 70 or so pictures. What I've gathered is that Kali had a lot of fun and that she really enjoyed feeding the goats (of which there were many pictures!). I'm sure more stories will come out in the next few days.

We had just enough time to enjoy a piece of fresh pumpkin pie together, her "one last game of the night" and a few stories before she crashed. A big day for our 5 year old!!

I realized today what a huge distraction Kali is for me from getting to the core of my swirling emotions on any given day. This can be both good and bad. Let's just say I go through a lot more tissues on a day when she is not present with me most of the day and I have time to sit and read, look at pictures, journal, and just be with myself and many memories.

Poem from Aunt Christie

I am a conjurer of infants
August, 2008
M. Christine Benner

The times we find
to talk about her
are precious and hard,
like gems.

I darkly suspect they come easier
to my brother and his wife.
Everyone who knows them
knows what happened
to their other daughter,
knows that they bleed
dry through the gash
of her absence
every day.

And they have Kali,
who lives without boundaries,
who talks as if she’s seen her:
her missing baby sister.

But my grief goes unseen.
I resort to trickery,
coaxing hapless strangers
into bearing the story of my baby niece
who suffered and died,
a pure and sinless sacrifice
to natural anomalies.
I am the worst kind of evangelist,
twisting all conversation,
to my one sad theme.

But I must find a way
to bring her to me,
to touch her soft forehead,
to create her again.

So on the cot at the
Red Cross blood bank,
too pale to stand,
I take up a conversation
about aluminum can tabs . . .

And in the lounge
at Sitterly House,
lingering by the copier,
I gingerly lift the questions
about my summer . . .

And at the jewelry store,
having the ring
lined with her birthstones
adjusted to my hand,
I grasp a jeweler’s compliments . . .

and I lay them down
only when they have become
Nora.

Birthday cards

Today while Jason worked up the hill replacing windows at Samuel and Margaret's, Kali and I had a low key day at home. Kali has gotten another virus of some kind - seems like a fairly minor cold thankfully. We puttered around home and in the afternoon got to enjoy having Phoebe with us for a few hours. She brightens up whatever space she is in!!

We went for a walk together down to get the mail. Kali is waiting expectantly for a book that she and Daddy made from a kit she got for her birthday. There was just one piece of mail in the box. It was for Nora. Kali opened it for her and inside was her first birthday card from the Virginia Department of Health (through which we benefited from the WIC program until Nora died.

I did okay taking it in stride this afternoon - Phoebe and Kali were good distractions. And I work in an office where I work with database systems and I know that sometimes a minor error can be a big mess up when you are dealing with people and emotions and life. BUT I have already made at least 2 phone calls to the WIC office and we got a sympathy card from them. I'm not sure how much more specific I can be on the phone other than to inform them that our daughter has died, we are no longer enrolled in the WIC program, we will not be coming to any future appointments and would they please do their best to note that in their system so that we stop receiving phone calls and mail. I tried calling numerous times this afternoon but was unsuccessful getting through the automated system to a person. It's not that I'm somehow forgetting that Nora's first birthday is next month and that none of us will have the joy of celebrating "how much she has grown" in this year. But this kind of reminder is not so welcome...

New life!

This morning a little girl, who had been dreamed of, hoped for and loved made her entrance into the outside world. I felt so honored to get to hold her just hours after her birth and marvel at her journey from inside to out. I wasn't quite anticipating the flood of emotions when I walked in the room. I wanted to celebrate with them and my tears were just a big mixture of celebration and grief all wrapped messily together. I found myself in awe of her perfect features and her chubby little legs and grateful for her safe and healthy arrival.

This afternoon after school Kali spent time with our good friend Mary Jo and had her own taste of experience new life - or something that is on its own journey from inside to outside. She got to join Mary Jo out at her flower gardens and came home with a bouquet of her own. A very special bouquet. Can you see why?? I'm hoping we can have a follow up picture down the road but if you look closely you will see a green chrysalis hanging from the purple flower. The big question is: will a butterfly emerge?

Chestnuts and the future...

It's that time of year when every time we go out to our car, we can find another large handful of chestnuts on the ground that have fallen from the tree since the last time we headed out. Jason has been collecting them for a number of days to use in a "recipe" and yesterday was the day to do it! Jason and I are pretty different when it comes to cooking. He enjoys finding a new recipe to experiment with and following it exactly the first time (otherwise, he tells me, you really don't know whether you like the recipe or not...). So he found a recipe for "chestnut roast" online and set to work. He "set to work" on it hours before I got home from work and when I arrived around 6:30pm he was still peeling chestnuts. Needless to say, the recipe became dinner for tonight instead, and was to be savored. He came out to me this evening when he was getting ready to put it in the oven and confessed that this was indeed a lot of work. So we sat down to our chestnut loaf dinner tonight, realizing in front of us was most of the chestnuts from one of our trees. And we did savor it, more or less, though Kali said it did not taste like chestnuts. I guess she didn't recognize it wrapped in garlic, carrots, lemon juice, etc... Jason was immediately thinking of all the ways he would modify it in the future to make it tastier. I was just thrilled to come to the table and eat the work of someone else's hands. We also learned something else new. Presentation is VERY important to our 5 year old. She gobbled the green peppers that Jason had cut up in circle rings, rather than the "boring" strips I normally do. Same food. Different effect. I should know this by now...

Speaking of our 5 year old, I keep wondering how Kali is doing and analyzing her behavior for signs of distress or a grief process gone awry. Many ask us how she is doing and sometimes I just don't know what to say. She almost seems to be doing "too good." Is that possible? On all accounts, she seems to be healthy and enjoying life immensely. She is eating well, sleeping well, playing well, etc... She talks about Nora freely and openly and happily. She has outbursts of emotions but I have yet to connect more than a handful of them to Nora, and she has connected none of them to Nora other than the very first time when we shared with her that Nora had died.

Several conversations this week have been helpful for me, giving me both reassurance and insights into Kali's process. The best analogy that I have for how Kali is now relating to Nora is that it feels familiar to how she related to Nora when she was still in utero. She talks about her and expresses affection appropriately for someone you can't see or touch. It's like Nora is still present in a form other than what we had for 7 short months. Kali talks about her like other loved ones who we don't see very often.

I think that Kali understands that Nora has died and that that is a permanent condition. I think she gets that Nora isn't coming back. But the difference between Kali and I is that Kali can't comprehend exactly what that means. It has been helpful for me to think about the fact that when Nora died, we didn't just lose Nora as our 7 month old baby. We lost her future too - our 2 year old, 10 year old, 16 year old... Some days that is the hardest thing to let go of.

Kali is such a great example of living in the present moment. So the moment of learning of Nora's death was excruciating and it seems she felt that loss keenly. And while I think she loved Nora and was a loyal big sister, it will likely be much later on in life when she fully realizes what she lost on June 4th. Until then she continues to live each day and make the very most of life, drawing on her incredible imagination and wealth of creativity. And I'd like to relax a bit and stop overanalyzing her, so I can enjoy this stage and possibly even glean some lessons from it.

We are grateful for the ways she has been part of our process and contributed to it. We are thankful for the many pictures we have of her with Nora for her to come back to. And I hope that we have the strength and grace to journey with her through all the many developmental stages coming down the pike.

Memorial Service at UVA

It's been about 12 hours since we left home this morning. A good day. An emotional day. A day full of remembering and celebrating and missing Nora.

After a birthday party at a local park for Kali's friend Maia who was celebrating her 4th birthday, we headed over to Charlottesville. As we neared and drove past the hospital, my body clearly remembered many of the emotions of our trips to and from that place (the butterflies in the stomach, the anxiety coursing through me...).

When we entered the school of nursing we were directed to tables where we could put the mementos of Nora that we brought along to share. Sometimes in moments like that, I still have a hard time believing that we have joined many other parents that have lost children. We added our items to tables full of pictures, objects, music and videos commemorating the lives of these little ones who were much loved and are now missed.

After dreaming last night that the service was awful (in my dream we saw no one that we knew and they didn't mention Nora's name or any other children's names), I went with minimal expectations. We were very glad that we went. It didn't take much to get the tears rolling for me. Kali responded as she often does in such settings of high emotion - she was calm for awhile, went through an agitated state for a few moments and then settled well for the remainder of the service.

I had never met any of the other 300+ children who have died in the past 2 years (and who were cared for on the 7th floor at UVA). But each of their names crossed the large screen at the front of the auditorium multiple times throughout the service and each of their names was read, giving family members the opportunity to put a carnation in a wooden "tree of life" at the front. Kali was eager to participate. I hadn't thought about my need to prep her for her task so was a bit taken aback when she went ahead of me and promptly pulled a previously placed carnation out of a slot to put hers in. Thankfully I was only steps behind and was able to return the original carnation to its rightful spot and redirect her to many other choices for spots on the tree. We so wanted Kali to be there and I'm so glad that she can add the service to her bank of memories in our family's process of saying goodbye and grieving Nora's death. BUT it does change the experience drastically for her parents!

Sitting right in front of me was a mother I remembered from the NICU. We had a chance to talk briefly as she remembered me immediately as well. She was a young black woman who I met one day in the "pumping room." We were drawn together by our desire to provide the best we could for our little ones - her baby was born premature and was a fraction of Nora's size. Jordan lived just 22 days. I well remember one day seeing her crying in the lobby and she told me he had an infection. Later on I saw others around her and I wondered if he had died. He had, just days before Nora came home with us.

Two parts of the service stand out to me. The first was when one of the nurses that had cared for Nora shared from a staff perspective. She shared how much the children she works with teach her and how those of them on staff do not forget these little ones who come in and out of their lives. She mentioned some names of children that stand out in her memory and what they meant to her. She mentioned Nora, her little body and her amazing spirit.

Later in the service, Dr. Noreen Crain, who we have come to deeply admire and appreciate, sang two pieces. I include the words of the one entitled "Lost Days" here. It was sung in Spanish but I'm including the English translation:

Los Dias Perdidos
Carlos Guastavino

"I want to sing my song as the bird sings.
I want my solitude to be sad
And I want, even though there are tears in my life,
A way to cry that is practical and smooth

My tired heart suffers and knows
That without crying out, its voice, being injured,
Is like the sweet promised branch
That grows upward only to find a dull and heavy fate.

For this reason I try to interlace my pain,
So that it may harmonize and be at peace
With the musical message of the wind
And that my verse, among the green grasses

May say simply what I feel:
That it is lost in this age of fright."

We were grateful for a chance to connect briefly with Dr. Crain after the service and will likely see more of her in the future. We are looking at participating as "faculty parents" in a conference at UVA in October on palliative care.

We also talked with the resident who worked with us during our final stay at UVA. It surprised us not a bit to have her remember Nora and her little binky! Seeing faces of persons who journeyed through those final days with us and to know that our journey is now woven into the tapestry of their work and their lives is somehow comforting.

I think that's about all I can put to words tonight. Maybe Jason will want to add something. We enjoyed a stop in Staunton to take in part of a soccer game where we also go to see and visit with good friends/relatives. We chatted for quite some time after all the athletes and spectators had cleared out. And Kali got lots of exercise running back and forth the length of the field. We ended our evening having a "silly dinner" of ice cream on our way home.

Jason writes: It is typical for me to need to ruminate about such experiences for a while before I have any distinct thoughts that I can form words around. Essentially it was just good and emotional to be there. UVA, at least in the portions of it with which we have made contact, seems to be an institution formed for caring, and formed by caring. Also the herbed goat cheese bruschetta that was among the delectables in the post-service "snack" was scrumptious indeed. I was humbled and a little taken aback by the shear numbers of families there. UVA serves a lot of kids, and even the best medicine can't keep them all with us, as we well know. I am looking forward to the palliative care retreat even though my perceptions about what to expect feel rather murky, but sometimes you just have to try stuff. I am intuiting from the information we have gotten to date that the palliative care approach being refined at events like this retreat is, by way of choices made by its pioneers, elevating the stories of children at the end of their lives (and their families) to equal footing with the offerings of the medical, psychological, etc. communities. While this is perhaps an imprecise and indirect way to learn, it is a very human way, and at no time in my life have I been more grateful for the ability of professionals to maintain a sense of their own humanity and of mine than in the weeks, days, and hours leading up to Nora's death.

Janelle just carried a sleeping five-year-old into her room after rocking and singing her to sleep in the front room for the first time in recent memory. I can't imagine that would usually work for our energetic girl, but she had a really big day. It also "worked" for her mommy, I think, because I heard some emotional-sounding sniffles accompanying the humming at the end. We are both so grateful for our healthy, vibrant girl, even when we want our tiny, weak one back again. In a recent spontaneous moment I mentioned to Janelle what a lucky person I feel I am. She said, "A lot of people looking in at this point in your life might not think that." I can't adequately express (yet) the deep and abiding sense of goodness I feel permeates our lives, and which permeated Nora's life and death. Perhaps I will someday recognize this same goodness in every person, even every living thing. It has taken knowing Nora to clarify it in my mind thus far; what upcoming encounters with the essential will be the touchstones that broaden my perceptions?

Janelle just took notice aloud that today marks exactly one year since the onset of the prescribed bed rest that accompanied the scary pregnancy that brought Nora into our lives. Most of the years of my adult life have been accompanied by a progressive acceleration in my perception of the passage of time; i.e., the years get shorter. But this past year has been very, very long.

SHINE interview

A week of silence on the blog front. I'm starting to realize that I'm needing varied spaces and ways of processing, and see myself moving away from utilizing this "online tool" as much in the future. We'll see. One of the things I've found myself pondering this week is our life's journey moving from being relatively private (other than with close family and friends) to relatively public (starting with my pregnancy complications and throughout Nora's life and immediately after her death). Now it seems like the time has come to figure out where on the spectrum of private to public we feel most comfortable lodging ourselves at this juncture in life.

I don't have many exciting pictures of this week, except about 50 of Phoebe who spent Monday evening with us. I spent much of the evening determined to capture the cuteness of her wrinkled nose when she would scrunch it up and sniff at us just as I did when I was a baby. ADORABLE. And I succeeded!! She has brought and continues to bring a lot of joy, laughter and energy to our household and she seems to think we are fun to hang out with too, which is flattering. Her whole body moves with excitement when Kali enters the room!

Today I'm savoring a much needed day at home. The house has a lot less dust, cobwebs, and dirt in it. And I got some much needed exercise. This afternoon I had a two hour interview about Nora.

SHINE stands for Skyline High-risk Infant Needs Evaluation and is a program that looks for reasons why babies die or are born too early. They are hoping that by learning reasons for prematurity and infant death they can better provide care for pregnant women and their unborn children. While voluntary to participate, I chose to. The interview was done here in our home by a very kind and considerate woman from the local health department.

Mostly I find that I'm looking for opportunities to talk about Nora and if this would be helpful for future families it seemed worth participating. However, the questions in the interview made me realize once again how unique Nora's life was. Much of what was asked really didn't relate - I had great prenatal care, I'm not experiencing violence in my home, we are not under the pressure of living from paycheck to paycheck and unable to cover medical expenses, our baby wasn't exposed to second hand smoke, alcohol or drugs, and we had good education about infant care. Many of the questions made me sad because I figure they don't make it into this kind of interview process if there aren't at least some persons that would answer the questions very differently.

It doesn't take away my sadness about losing our baby. It doesn't make Nora's death less tragic. It doesn't minimize our grief or change the roller coaster ride of emotions we find ourselves on. But it does make me feel so grateful for a stable marriage, good health insurance, a healthy energetic fun 5 year old, having our basic needs met in abundance and our gorgeous view which the interviewer commented on multiple times...

The interview did give me an opportunity to mention the difference that palliative care ("comfort care") made for us in Nora's final days and in our processing of her death. And it also gave me a chance to give a recommendation that they include dads in their program!!

Tomorrow will be a big day for all of us. We head back to UVA for the first time since Nora's death for a Memorial Service planned by the Children's Hospital for family members who have lost children that we cared for on 7th floor. Kali has chosen the orange outfit to bring along and we'll bring with us her memory box to include on tables of mementos that will be present there.

We are grateful for a way to reconnect with a community that shared some of our most intense life moments with us. And I'm grateful we can be there together as her family. I still feel so proud of her!

The illusion of control

Periodically I find myself in a situation where I have some control over my surroundings or circumstances. Construction projects, especially those involving inert materials, fit the bill nicely. The front walk project (involving dry-laying paving bricks in sand, at this stage) is a good example, and was the order of the day today for me.

In light of that, I am interested in my mood this evening: less tolerant of little inconveniences, decisive, quick to act, not very silly, etc. It could be the result of working against the Hurricane Hanna clock to get to a specific point…pushing myself, pushing myself all day. Maybe when a person pushes themselves all day they end the day feeling a little pushed around. At any rate, the walk is shaping up according to expectations, and the results are pleasing to me, and I feel the greater part of my mood is due to this reality, which has been my obsessive world for a handful of hours. The illusion of absolute control over my circumstances is deliciously seductive when things are going “right”. But I think that people who feel (more than think) that they have their circumstances comfortably in the bag are generally not happy people nor are they pleasant to be around, because they have come to base their own sense of wholeness or security on something which is exceedingly fragile (on some level they know this). They have a tendency to be intolerant of all those other people who have failed to achieve the same level of general competence. Children seem to be free of this malady, and have a tendency to liberally distribute monkey wrenches in the works: rare is the child who is predictable or whose behavior is always “right”.

If parenting teaches us nothing else, it seems it ought to be that to love another person well means to let go of the need to control all our circumstances (each loving relationship encounters some circumstances which are unacceptable…healthy boundaries require us to stick up for our rights or needs in sometimes painful ways). While we were in the thick of decision-making and intense care provision for Nora, it was so abundantly clear that we could not control what was going on. That was the reality that we lived in every hour of every day, and I feel as if we adapted to it surprisingly well (after resisting for quite a while). It was a kind of freedom I hadn’t known before: there was nothing we could do to change the facts, so we allowed the waves to wash over us, finding they washed away many of the things we usually busied our minds with, but which matter (especially at times like that) very little.

I would never, ever wish that we could experience the death of our child once or ever again. It was a precious and beautiful time that I would wish on no one. But I could wish that it would be a little easier to live the gifts that that time presented to us. Part of the problem is that those things which must be dropped or which are washed away in the immediacy of an unfolding loss or tragedy are often things which are quite useful in ordinary life. Things like efficiency and thrift are not helpful concepts when it comes to crisis time, or when dealing in personal relationships with loved ones. However, as habits that help us live our ordinary lives effectively, they are essential to creating the space around us that we need to maintain our sense of where we are in the world.

It is ordinary life that is our main focus now (it has its own beauty). Our time is quite well accounted for just in terms of completing the work set before us and keeping our bellies full and teeth clean. It’s sort of unsettling to notice how quickly the time goes by this way. To complete the circle with the thought with which I began this ramble, if the work set before us is not too overwhelmingly much, and if we complete it reasonably effectively, the temptation to believe in our ability to control becomes strong. One of the gifts Nora leaves with us is the memory we have of those moments when we had to let go. It is a memory of what it feels like to be free to love with all my heart. It is an antidote to the seductions of ordinary life.

Jason

P.S. This evening we enjoyed our first social event on the patio incorporated into our front walk: a Fruit Farm Lane neighbor’s potluck, with Hurricane Hanna storm clouds gathering overhead. Any mood difficulties which anybody may have experienced were (hopefully) not manifested until the merry guests returned to their homes to listen to the rain. Each time a chair squeaked on my tightly laid bricks was a tidy satisfaction. That’s fine for now and I’ll enjoy this stage, but as time passes and the weeds and ants find their ways into the cracks, I trust my satisfaction will transition to a roomier variety.

School, already sick...

Tuesday was Kali's first day of school at Shenandoah Valley Community School. She was excited (up off and on from 5:30am on that morning). However, I thought I might have to go to work without my pinky finger that day as she was reluctant to let go of me. The day went fine though and she was eager to return yesterday morning with Jason to "volunteer."

I was not so thrilled Wednesday evening when Kali's nose began dripping constantly and her little eyes started getting that bleary "I don't feel so good" look. So by Thursday morning, just her second day of school as a student, she was already home "sick." She has perked up considerably since then but yesterday when Jason wondered why she was being so quiet and letting him get lots of brick laying done, he found her sound asleep in the hammock (our sure sign that something is not right!! She NEVER takes naps otherwise). I've been told this is par for the course - first year of school she'll be sick a lot. I've also been comforted that it is "good for her" since it builds immunity. I'm trying to let that soak in. Of course we also think about how careful we have been this past year to not expose our family to germs for Nora's sake. I haven't been near as much of a stickler about hand washing and can't say I'm all that thrilled about using hand sanitizer much...

Today is a much needed Friday at home for me. Kali and I started our day with a walk with Kristin and Phoebe and then enjoyed breakfast together. It struck me this morning somehow that Kali is still working on her bag of colored rice krispies that we got in our box of food from the social worker at the hospital during our last stay with Nora.

Kali is currently riding her bike around the front room (going about 4 times as fast as she did the day she got it). I'm enjoying a day to putter and get reacquainted with our home space and with Kali. Kali enjoyed doing some photography this morning while I hung laundry and it seems a few are worth sharing :)

Three months...

I sit here poised to type in the quiet and dark and I'm so tired I can barely see straight and in moments tears will probably blur the ability to see at all. Something has to change for me, and soon. I cannot keep going at the pace I am with work and stay healthy, emotionally and physically. I am not present to Jason or Kali or myself or to Nora's memories in the way I need and want to be right now. I am present to my students and the needs are great, especially right now. But how to blend the needs right in front of me with the needs of my grief journey is beyond me right now.

I just finished last night the book, "Uncommon Fathers: Reflections on Raising a Child with a Disability." We were given it while Nora was still with us and Jason read it during her life. I never got to it and it has taken most of the 3 months since Nora died to get through it. I gleaned tidbits from it but the one line that stuck with me the most was in the very last essay. Inserting Nora's name for the child's name that was in the book, it would read "To keep up with Nora I had to slow down." Somehow to feel close to her and in tune with some of the many things her life taught me I feel like I somehow have to find a way to slow down. But I don't know how to lower my expectations for myself, when there is so much to attend to at work and home and for many "the crisis" with Nora is over.