I cannot say how much good it has done me to have this space to express myself. More and more I realize that language has so much to do with how I make sense of my feelings and the world. Writing here has been tremendous for me to find my new balance, to vent, to explore what I feel, to move forward, and to sense that I have, in some small way, an effect on the world–in the very least to share my beautiful girl with the world and to help people have a better idea of what daily life with a child who is medically fragile is like.

But there are times when I cannot talk here. It is not that I don’t want to be honest with my readers (or myself), but rather that I feel acutely aware of the public nature of this space. It has happened before that I have written something I felt was innocent enough…or at least enough about my feelings that it was not expected to be rational or, strictly speaking, “fair”…only to get push back “in real life” about what I said: “Did you mean me when you were talking about typical parents who…”

I write about things on here at times that are not easy for me to encounter about myself. I am not shy, or so egotistical that I expect to be in the right, or terribly worried about what people think about who I am…At the moment, however, I am feeling a bit gagged. I cannot quite put my finger on why. But every time I sit down to write I find myself exploring a line or two, feeling like I am on to something raw and interesting, and then stopping cold with an: I can’t say that. And then I tuck the thoughts and words away into a file for when I can manage to be less offensive, less overly honest, less uncomfortable…

Unfortunately this seems to correspond with a time in which I am experiencing a set of feelings that are too big and frightening for me to even consider approaching productively easily in my real life…the kind of aching longing pain in your heart that puts you in tears in the middle of the grocery store over what you feel you have lost–and what seems to come so easily to everyone around you. It is the kind of frustrated anger that threatens to come out only in expletives because of the short-sighted self-important stupidity some people are capable of. And it is the kind of deep fear that makes you want to hide under a rock rather than deal with say, I don’t know, completing a dissertation or worrying about the health of loved ones.

This creeping sadness and frustration became very big for me yesterday after another set of attempts to draw blood from Ezzy. All I could think was how simple life is for some children (and parents)…and how I have to regularly help do things to her that she cannot understand as being helpful in any way, just painful…how in these moments her world is so frightening and unpredictable…and how I feel as though I am failing her in some essential way. Why can’t I give her a simple and stable life? Why does she have to be forced into being so extraordinary all the time?

And then today we walked through Esmé’s Medicaid level of care meeting in which she is assigned a number based on her physical, adaptive, and cognitive “deficits” and medical stability and presumptive future. I talked about her desaturating regularly to below 15% (with seizure and breath-holding) and watched the look fear/shock on the assessor’s face. I just felt cold the whole time…like saying “what do you want me to say?” I wanted to put my head down on the table and cry, honestly. But I didn’t, of course, I laughed and smiled and chatted and shut down the part of my mind that was looping through fear and anger.

But, I suppose most of you can tell by now, that while I may be sad, frustrated, and overwhelmed I have learned in a weird way to thrive on these emotions. And as much as I wish I knew how to productively explore them here, right now I cannot. I will use them in other ways. Right now I am promising myself that:

  • Rather than turn in circles, I am going to finish my dissertation as quickly and unselfconsciously as possible (and then make everyone I know refer to me exclusively as Doctor). 
  • Rather than worry about what is in my daughter’s future, I will be positive and productive. I will not accept anything but the best for her whether in her doctors or in the research for her disorder or in making sure she is included and treated with respect. 
  • Rather than wondering about what others think, I will continue to do my best and make the moves that I feel are honest and good. 
  • Rather than trying to hide it, screw it, I’m giving myself permission to cry in the grocery store or wherever the hell else I feel like it…

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