I have posted on here before about my process of “mourning.” I say “mourning” in quotations because that is what I have been told it is. But increasingly I feel there is something about that word that just doesn’t fit.

It rubs me the wrong way.

Yes, I feel sorrow for some of the things that haven’t gone the way I imagined them. More than that I feel sorrow (and absolute rage) at my complete helplessness in the face of Esmé’s pain and struggles. But the idea of mourning anything to do with my bright, vibrant, fearless child just isn’t correct.

Mourning is for real and true loss. I suppose it could be said that I have lost a naive version of myself, the version who couldn’t imagine something like this happening to her child and the same version that clung longer than necessary to the idea that the right food or vitamin or medication might “fix” her child. But there is no replacing a true loss…And in this case that person has been replaced with a woman who is very aware of her child’s mortality–of the brittle strand that tethers an infant so loosely to this world–and who will fight for this child with more focus than she thought she was capable of.

I wouldn’t go back to that naive self. No matter how much it pains me to see a similar naiveté in the eyes of other parents.

To call my experience mourning seems offensive to the mothers who have lost their children, who truly mourn an irreplaceable absence. And it seems offensive to the presence of this beautiful soul who I have been blessed with protecting.

But my resistance to “mourning” seems also to have stunted my ability to accept the sadness I do feel. I find it hard to give in cry for the heartbreaking feeling of seeing my child endure all the horrible shit that is dished out to her: pain, seizures, fear, sickness, confusion. But I have to steel myself against those feelings in order to hold her while over and over someone tries desperately to draw the minimum amount of blood necessary to try to understand why she is sick all the time, or if her drug levels are safe. I have to stay alert and not panic when she seizes or has trouble breathing. I have to be tough to make sure she gets everything she needs from her medical team.

I find it hard to cry for the alteration of my plans–a career that seems like a distant idea I had once of teaching and traveling and moving somewhere exciting. I find it hard to realize that while my friends plan vacations, even the ones to Disney that adults begrudgingly embark on for the kids, I cannot imagine a vacation in our future. We use “vacation” time for extended hospital visits. But, we have time together. We have fun together. I’m not allowed to cry for that…

The other children I had hoped for, but who now I worry could be born fragile like Ezzy, or who could get lost in the flurry of action around a medicalized sibling who needs so much…A pregnancy with a baby who kicks, whose foot stretches out against my belly, who other people can feel move…How can you mourn something you never had?

I don’t know what to call it, but it is not mourning. It feels like a coming to terms with the helplessness and confusion we all encounter in the randomness and pain and beauty and grief of life…

Until recently I have felt somewhat paralyzed to act in the face of all of that–except, of course, to meet Esmé’s immediate needs. Everything seems too big to act on. But I feel a deep need, a hunger, to act in a larger way…to have an external focus. Slowly, through deliberate steps toward a goal and with some wonderful help, I am finding my feet. And I am excited to be moving forward(…and to get to tell you all about it soon).

Somehow this forward motion is permitting me to feel some of the sorrow I am holding onto, to allow my emotions to be what they are, unapologetically…they’ve been making their way to the surface spurred by a friend’s pregnancy announcement, a new sub-diagnosis for Esmé, a doctor finally ordering some of the tests I feel Esmé needs.

And strangely, it makes me feel a little less alone.

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