At least one thing is getting easier!

Well, I wasn't sure if it was going to be possible, but donating blood is getting so much easier. The hardest part was locating a blood drive happening in the area (and I hate the finger stick to check my iron level - I always jump). Kali got to come along and sit right beside me this time, and she was happy with that (also happy to get to have the snack AND to get a t-shirt without having donated). It also helped that we went to a blood drive at JMU, which is where she plans to work when she grows up since one of the school colors is purple. If only all life decisions could be made so easily!

Something has shifted in me that I actually find myself anticipating with eagerness the 8 weeks coming to an end so I can engage once again in this simple act of giving of myself, in such a real and very tangible way. It is not just life giving for the person on the receiving end of my blood, but life giving for me as well. Today I found myself craving it mostly so that I would be sitting (unable to move or do anything else for 15 or so minutes) and doing something which takes my mind so easily and naturally to Nora. It felt good for Jason, Kali and I to be there together. I was grateful for that time and that connection to Nora's memory and to the ways she inspired me and helped me learn new things about myself.

It's not that there aren't so many other times each day that she comes to mind. There are the fleeting thoughts, the moments where I pause at work to soak up the picture of Kali holding Nora that is on my desk, or when Kali finds again on her shelf the children's book "Noisy Nora" for us to read. And then there are the more poignant moments. When we lost one of our chicks early on (it was just too weak and tiny to keep going - the runt of the group). I'm quite sure my tears were more about Nora than the chick. Or while preparing to share part of the welcome at this year's CJP graduation celebration, in which I could not help but weave some of the ways our journey with Nora was so connected to this cohort's time in the graduation program (I had just finished orienting them when I learned that Nora was not growing well in utero). And then just this week when we took Phoebe with us (without her parents) to a community potluck where someone said to Kali, "I didn't know you had a little sister..."

For me the coming month at work will be very reminiscent of the happenings of last year. As the Summer Peacebuilding Institute got underway last year we were holding out hope that the feeding tube was going to provide some relief to all four of us. And then as each session went by, we found the journey becoming more and more uncertain and scary. I look forward to being able to be more physically present at this year's SPI, but realize too that my emotions will likely be closer to the surface than at some other points in this year. At the same time, I feel I will be able to be, because of our journey with Nora, more fully present to the stories of joy and of loss that the many coming from all around the globe will bring with them. For that I'm grateful!

Empty jogger

Sometimes rubbing salt in the wound is one hundred percent innocent and unavoidable.

Yesterday we took part in the March of Dimes March for Babies that took place in Harrisonburg. We were walking on the "Tres Milagros" team, which was formed in honor of the triplets who benefited from Janelle's extra breastmilk during Nora's life and for some time thereafter. They and their parents have become our friends, and we enjoyed the morning together. Of course with the emphasis of the event being on supporting babies in their health challenges at the beginning of life, we had Nora on our minds a lot.

Kali, even with all her energy, couldn't be expected to walk even the "short route" unassisted, so we transported her in our jogger stroller, the weight limit on which she has almost certainly surpassed. But after the walk we all milled around for a while, munching the provided pizza and hot dogs, playing with the toys from the kids' toys and bubbles table, and generally goofing off. For some reason at one point I was following Kali around at some distance, but still pushing the jogger.

And that's when the unfortunate coincidence occurred, as a friendly crowd member saw me pushing the empty jogger and quipped, "Where's your baby?" This jolted me in ways I couldn't have predicted. It was like a nightmare that lasted for half a second. I think I was able to recover quickly enough to smile at the woman and avoid letting her know there was anything hurtful about her innocent joke. The general public should not be obliged to tiptoe around every little comment that could possibly abbraid the sensitive emotional nerve endings of a grieving parent. It's nobody's fault, and it's nobody's responsibility. It just happened, and it just hurts. And then it doesn't as much, and the ruffled feathers soothe back down, and I can go back to paying attention to the beautiful day.

Chicks

A portion of a longer letter written by Jason to family and closer friends: Today is a big day around here…the chicks have arrived! This morning at around 6:45 I got the call that the Penn Laird post office had our chicks, and I could retrieve them at my convenience. I found it convenient to be there by 7:08. I realized as I drove out our drive that I’d forgotten to brush my teeth.

Upon my returning home with the peeping box, Janelle and I decided to wake Kali so she could bond with the chicks for a few minutes before needing to head off to school. I sat on her bed with the box in hand, while Janelle woke her with a gentle “What’s that sound, Kali?” Kali’s first words of the day were “peep, peep,” spoken with eyes still closed, but through a broad smile...

As with so many aspects of my life since Nora entered it a little over a year and five months ago, feelings of excitement and promise come with other feelings mixed in. In this case, the “other feelings” are hard to describe, but what I’m thinking about when I feel them is that this brood of chicks signals a resumption of plans we’ve been working on since before Nora was even a twinkle in our eyes. When it became clear that Nora’s condition was stagnating right around this time last year, we made the decision to get rid of our last hens and rooster (we had already downsized) and focus on caring for her and the rest of us through that trying time. In addition to the sadness of Nora’s decline, we knew that there was no guarantee that the demands created by Nora’s particular needs would ever subside, and that the adjustments we would have to make to our dreams were possibly quite drastic. We were prepared to make those adjustments, however, if that was what it took to provide for her. Now I feel us, piece by piece, re-engaging with our former aspirations, and the place I find myself in with regard to that reality defies my descriptive abilities. How do I say four things at once? I want to reassure you that I’m incredibly grateful for our opportunity to explore a somewhat self-reliant lifestyle. Simultaneously I know grief: Nora is not here to share it with us...

A tiny bud

This past Saturday held another one of those moments that brings me up short. I was walking across the rug in the living room when something on the floor caught my eye. Sadly I realized that it was a walking iris bud that had somehow been prematurely disconnected from the plant, just a day before it was set to open its gorgeous delicate petals. The sadness I felt in that moment was so incredibly disproportionate to the situation at hand. My thoughts: This little bud will never be a flower. There is nothing in the world, as much as I may want to, that I could do to make the tightly wrapped petals unfold.

Kali was there with me. I found myself saying out loud to Kali that this little bud just doesn't have now what it takes to become a flower. Sunday morning I watched as three other buds slowly opened up, revealing their striking purple and dark brown centers. Three flowers bloomed and one remained closed. Now it sits shriveled beside me on the desk no longer strikingly different from the other flowers that bloomed for one day and then shriveled.

Yesterday a wonderfully caring friend gave me a CD that has the song "Nothing is Lost on the Breath of God" on it. As I listened to it last evening the line "no flower too brief in its glory" stuck out to me. I told Jason through tears last evening that that song in so many ways articulates what I hope and wish to believe about the world. And about Nora's life and death. But clearly I'm not quite there yet. That little flower bud for me was a flower that didn't get its moment in glory. From my perspective, it was cut short too soon. Something about that little bud laying there felt tragic and sad to me.

Only Four Words

This week I had an unexpected, in the end helpful and I think healthy, exchange with the leadership of a local Mennonite congregation. I pass this church several times a week on my way to take Kali to school. (I should note as a backdrop to this story that I don't tend to be overly appreciative of the little phrases that are chosen for church signs. I usually am able to laugh, shrug them off or just realize that it may just be another way that I'm unusual; I find advertisements to be pretty obnoxious a lot of the time too.)

This one, however, got me. It made me mad. It made me sad. It felt trite, and uncaring, and out of touch with the lives of real people - likely more than just me - driving by. Only four words, but they stung: "Death died on Easter."

I feel quite certain that there was no mal-intent on the part of the sign chooser - and that was graciously confirmed and the sign changed in less than 24 hours after I sent an email expressing my concern on how the sign could be perceived by families who are "freshly" grieving the loss of a loved one or who are currently journeying with a loved one who is dying, as a close friend of mine is doing right now with her mother.

I also realize that there may be some who actually find these words comforting. And some who would feel more theologically in tune with the sentiments behind this phrase. That being said, it is hard for me to imagine that a large percentage of persons driving on this main thoroughfare would not find the sign either perplexing or offensive.

It is quite clear that people are still losing loved ones on a daily basis. People are dying - whether my friend's mom to cancer or persons embroiled in conflicts raging across our globe. And those that have died are missed. Those left behind grieve.

It's not that I've been blind to the new life all around us this spring - the lambs frisking about in the pasture on my way to work, calves coming up to the fence to see us when we pass on our walks, yellow flowers everywhere popping up amazingly often in sets of three, babies of friends being born and the rising excitement in our household over the chicks that will be arriving in less than a week. It's not that I don't celebrate those welcome signs of the earth rejuvenating and the cycle of life continuing. Somehow, though, I want to move towards a place in my life where I can more readily accept, celebrate, grieve, and be part of the full cycle.

Just today I had one of those moments where I had a pang of guilt for soaking up a tender moment with Kali. We were outside and it felt so like the few days we went out last spring with Nora in the snuggli. Irrational or no, I felt like I was somehow being untrue to Nora's memory to be happy to be there, Kali and I, enjoying the fresh air and warmer temperatures (there without her). Death is a very real part of our family's journey right now. For me Easter does not bring with it any magic power to remove death from our lives, though it may symbolize in the tradition I'm steeped in that there are ways in which those who live faithfully, courageously and fully continue to be present to inspire, encourage and spur us on.

Winter...

I am realizing, once again, how I feel drawn to use this blog for different purposes at different times. Lately, when I feel the urge to write something, I find that I have a new audience in mind, and audience of one: Kali. For whoever else may land on this page, I could wish that they might find something helpful or inspiring or comforting, but it seems that that is not my (current) main goal. I find myself wanting to not forget to put snippets here that some day down the road when Kali is old enough to think about, care about, want to know about this time period in our family's history she will find bits and pieces of her process woven within (and I can't help but hope that maybe it will trigger her own memories, or possibly some much desired explanations for her parents or her thought processes in these days - I know that that is likely very wishful thinking).

For example, the other night we were in the middle of the nighttime routine. She was sitting on the potty. Out of the blue, Kali asked me something like, "What season was she with us for all of it?" It was clear that I was being included in this thought process somewhere midstream as there was no lead in and she assumed I would know exactly what she was referring to. I did. And inside I felt glad to see that she continues to ponder her sister's presence with us, even if she only lets us in on it occasionally. I replied, "Winter" but when seeking any additional information regarding her thoughts, I was not granted more. She had received confirmation of the information she was seeking and was on her own once again...

Kali and I got to spend some time with the triplets again the other day, and introduce my mom to them! It seemed to take Kali a good 45 minutes to settle in. I'm not sure if it was the fact that Carina (her "favorite" triplet) was decked out in pink, which Kali has developed a strong aversion for, or if Kali was just tired out or if for her, like me, there is a strong emotional connection to these little people that reminds us strongly of Nora's life. I may never know. What I did notice in myself was that it was the first hour or so that I haven't thought about how I was feeling physically for weeks. As soon as I got in the car to leave, I felt the various aches, sensations, discomforts I've been experiencing now for weeks and it hit me that I had just enjoyed an hour free of it, fully immersed in the antics and cuteness of three very special little people.

Time for thoughts...

Kali has once again sacked out in the recliner before 6pm. While I'm ever so grateful for the alone time this occurrence gifts me with, it would be better spent time if I was not spending part of it worrying about her health. It seems that if nothing else gets our attention and makes us slow up, our bodies will require it! I've been feeling "off" physically for a good month or more now, but have been hesitant to seek medical care because my various symptoms are not causing me any extreme pain, just general miserable feelings. And a good number of them, like the tightness in my chest, seem so clearly connected to life circumstances more than anything else. Nothing sticks around long enough to be a clear ongoing symptom, but they all lead to me spending more moments than I would like to worrying that something serious is wrong. Kali is more decidedly sick and my lingering symptoms coupled with her fever and extreme tiredness finally motivated me enough to make an appointment to have some blood work done on Monday (on me initially and hopefully Kali will be bouncing back by then and we can avoid that potential ordeal). I'm still very well aware that I may learn nothing more than I did at the dentist a few months back when I went for my tooth/jaw pain: "you must be under a lot of stress."

In so many ways today has been a "good" day - if we care to judge the quality of a day. I'm at home. Jason is at home. Kali is at home. It is warm enough to open windows and get a cross breeze through the front room, which I'm enjoying as I write. The open windows allow the sounds of Jason working out front to filter in. Kali and I enjoyed a walk past the cows and to the horses, me walking with her riding in the jogger which she has nearly outgrown. I conjured up enough energy to mix up a batch of french bread which is rising and will be enjoyed hot out of the oven for dinner. I had time enough to putter, doing various small but important household tasks that have been building up this week (emptying the trash and paying some bills to name a few). And most importantly, Kali and I enjoyed lots of "cuddle" time together while making quick progress through Alice in Wonderland, which she was just given (which, by the way, struck me as a very odd story after not having read it since childhood).

Yet when I stop to check in with myself, I find that for whatever conglomeration of reasons, I'm in a space where I'm having a harder time relishing life. And I have a tendency to want to place judgment on the space I am in rather than accepting it for what it is, and also accepting my limitations within it. I feel disappointed in my inability to not only see, but treasure, all the beauty around me. It's just that what I want most is not possible. Yet life is so often like that. I just sometimes have more energy, stamina and strength to accept it. A statement in the little bulletin we just got from RMH Hospice resonated with me: "It has been many months now since you experienced your loss. We understand that grief takes time and you may still be struggling with feelings and changes that seem harder than before..."

One of the most helpful things for me lately has been the connections we have had once again with some of Nora's care providers, all within a strikingly small window of time.

First we received the news from Dr. Braddock, the geneticist that worked with Nora and us, that Jason's poem Surf was indeed published in the American Journal of Medical Genetics (with the following Editor's note: "The following poem is a stirring piece written by the father of an infant girl who died with a novel syndrome. The words resonate with anyone, but especially with those who care for children with life-threatening conditions.") See our October 30, 2008 blog posting for the actual poem. He also shared a bit of an update on the ongoing research he is engaged in regarding Petty Syndrome, which is the novel syndrome Nora had.

Then at work the other day, I was surprised to receive a "check in" visit from the person that worked with Nora here in Harrisonburg (through the early intervention services we were hooked up with). She was driving by and just "had to stop" and see how I was doing. I don't know if she will ever comprehend how much that meant to me. Tears surfaced quickly as we were talking about Nora and as she shared how she would never forget her even though it was only a brief time that she was able to interact with her. I could feel myself just clinging to her every word.

Most recently, we heard from Dr. Crain who cared for Nora and us, during Nora's final days with us. In addition to just staying in touch, she was checking in about our possible interest in co-authoring a paper with her (likely reflective in nature) for the Archives of Pediatrics and Adolescent Medicine on something related to palliative care, dying, and bereavement. While we know very little about where this would lead or what it would entail, Jason and I both had very little doubt that this was something we would be so privileged to be part of and that the process of writing and reflecting would help us continue on our healing journey.

There is a common thread in all of these interactions that I realize is likely what makes them so powerful for me. The three people above knew Nora! They met her, they touched her, they interacted with her and they interacted with us as we cared for her. And we knew them only because of Nora. Clearly there is no way they can now form (nor would we necessarily want them to) the hub of our support network as we grieve Nora's death. However it is something that I also find myself grieving; that many people that we love and care about never got to spend much time, if any, with Nora.

Well, Kali is awake and clearly in need of tender loving care (and a lot of coaxing to take a fever reducing medication which she wishes desperately to avoid). How to communicate to a five year old how much better it is to drink, eat and take medicine orally at home, than to need to be cared for elsewhere and in much more invasive ways??