This evening our friends and neighbors Samuel and Margaret Johnson came here to Nora’s room on the west wing of the seventh floor of the UVA hospital and paid us a visit.
They had brought one of their fine, simple meals along, which tasted and smelled so right, in ways hospital and restaurant food never could, and they brought with them the warmth and caring that they take with them wherever they go.
It was all most welcome.
Samuel had also brought his new dulcimer, and after we ate and chatted a while, he got it out and played some for us and Nora. Janelle commented that if she closed her eyes, she could almost imagine she was home (Samuel has played his dulcimer at our house with some frequency). After a while, Nora seemed to want to lay back in her crib (Janelle had been holding her), and I went to her bedside to try to help her fall asleep. This involves returning her dropped binky to her hands as needed and rubbing her head and patting her. Samuel and the dulcimer provided the context.
And somehow that did it. I am an emotional person at times, but in my adult life am not prone to crying. But soft light, a taste of home, old time music, and friends that care; the transposition to this context and after the days we’ve been having cracked the nut. I was grateful for the release of pent-up feelings and for the safe space into which to release them. The music seemed to sooth Nora. When they left, she was soundly asleep. Her oxygen saturation was at 100%, and her heart rate down to 130. She was at peace. I laid in the dark on the sleeping mat we have set up for us in the corner of her room and thought about things.
When Janelle returned from seeing them out of the hospital she laid down next to me and asked me what my tears meant. I told her “about forty different things.” After talking briefly about it, she wondered if I would be able to write a little about it so that she (and you) could understand a little more, since she knows that writing is probably my best way to accurately represent my feelings and perspective. Thank goodness for that backspace button!
Nora’s care regime has recently changed in subtle but significant ways in response to her not turning the corner towards health as quickly as the doctors had hoped. She is now on a program of energy conservation aimed at building up her reserves of strength. This will also theoretically maximize her efficient use of calories to build and heal body tissues. In practical terms, this means that tube feeding has moved to 24 hour steady infusion, so that she doesn’t ever have to deal with a full belly. Also breastfeeding is being reduced to a comfort measure only, so that she doesn’t have to work for her food. Lighting and other stimulation is minimized, as is medical monitoring. She receives scheduled Tylenol doses to minimize discomfort. I’ll add that this is assumed to be a strategy to get her “over the hump.”
To our surprise, Nora has responded to this care regime by taking to it very well. She is usually resting pleasantly, usually only rousing herself to express a need for a diaper change or to interact with weaker versions of her characteristic smiles and coos.
This is evidence that this is just what she needs right now, and it probably will give her the best chance to find her path out of the woods. But for Janelle and I this is also a letting go. Our baby now needs rest and quiet more than she needs to be cuddled and held (though she still needs bedside presence, attention to needs, and gentle touches). For Janelle particularly this is a change because over the past hours Nora’s craving for breastfeeding has noticeably diminished, and her difficulty with the mechanics of it noticeably increased, or rather Nora is now allowing the difficulty of the task to dissuade her from trying wholeheartedly. Janelle and I sense a fork in the road coming up.
The options for what might be wrong with Nora are getting few, as are the solutions. We are beginning to feel that we are rapidly reaching the end of the medical community’s list of ideas. If attempting to achieve fluid/calorie balance fails to produce the desired result, it seems as if nobody knows what comes next. It’s sort of the last good idea, so far as we can tell. And it very well may be right, in terms of this acute situation. I certainly feel that, assuming what is going on is what they think is going on, we are doing the right thing for Nora.
What is perhaps serendipitous is that in my opinion we are doing the right thing for Nora even if we’re barking up the wrong tree in terms of causation, because the current strategy is based on keeping her comfortable, which Janelle and I have been clear is our top priority for Nora’s care. Things are too uncertain for her future for us to allow her to suffer now.
For me, Nora’s situation is really still very muddy, but as I said the options are limited both in terms of Nora’s possible diagnosis and in terms of her treatment. This has allowed my mind to spend some time considering where we are on this journey, and to find ways to characterize things that make sense to me. So here goes: I feel in some ways that Nora is withdrawing, and feels grateful to do so. I am not saying that I think she is going to die now, although with each passing day I have to admit that seems more possible to me. She might just as well be withdrawing for the purpose of healing. This is emotionally resonant for me, as I am an introvert who withdraws into himself daily for healing and rejuvenation. But as I mentioned above, it does feel that Janelle and I are needing to release her, or at least let go of some of the ways of caring for her that are so familiar to us, and that is frightening, because we don’t know if we’ll ever get her back. Some might say that we are releasing her into God’s hands, some might say into the hands of the medical powers that be. But I feel that we are releasing her to herself.
I may need to hold her lightly, but I am still her father, and I have a job to do. She needs me to be there to look after her comfort. She needs me to (gently) defend for her a territory in which she can work out her healing, or can peacefully and calmly let go of the need for healing. Many people have admonished us to take care of ourselves, by which they seem to mean that we need to get out and do something else for a while. I understand what they are saying and there is lots of wisdom in it. But for me right now, being at Nora’s side is the best thing I can think of to do for myself. This is exactly what I need, because it’s exactly what she needs. Seeing her work for her health is an inspiration to me…I realize how much she has to teach me about hard work. Also, there is the very real possibility (not a strong one, according to the doctors) that these are the last days we will have with Nora while she is of a clear enough mind to perceive our love and care. I don’t want to give up any of my minutes with her.
I am aware that if this letter goes out in its present form, it will be something of a tear-jerker, and for that I apologize. But I also know that many of you have been following our family’s story closely, and are invested in knowing truthfully how we are experiencing all of this. Having had a few minutes to think today, this is where I find myself. It would be dishonest to say we never feel self-pity or feel a little ganged up on by the universe. But mostly (I’ll speak for myself) I understand that nobody did this to us. I understand that nature’s strength lies in its ability to accommodate imperfection, even thrive on it. Nora’s body is a graphic depiction of the downside to this strategy. As humans, we naturally reject letting nature have its way with our loved ones, but there are limits to our ability to hold back the tide. My challenge, as I see it, is to immerse myself in this very human endeavor without being consumed by it. To be open to what it has to teach me about life and love. Nora’s life may be as long as yours or mine, or it may be over soon. Our job is to provide for it to be a good life, well lived, no matter what. Jason
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