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??