Incongruous

Today went a little better, but it was still hard. I’ve had four months of not having to concentrate on anything, so trying to concentrate for 7 hours a day, especially when it’s still hard to think of much other than my dead child, is rough. And exhausting.

These past few days, my brain has been stuck on two images. The first is the one below, of Hudson’s daddy swinging her around in the air by her feet, her arms outflung embracing the world, her wispy hair blowing in the breeze, her face grinning from ear to ear, her laughter lighting us up from within.

The second is of my sweet girl lying in the bed in the PICU at Children’s Hospital. This one I’m glad I don’t have a picture of—the picture in my head is bad enough. Sometimes I see her, eyes closed, with the ventilator tube taped to the corner of her mouth, IV tubes running into her little hand all taped to a board to keep it in place, her face and lips swollen from all the fluids they’re pushing into her, white sponge-like things taped to her forehead measuring the oxygen saturation in her brain, her hair a mess from the sticky adhesive they’ve used to attach sensors to her head for an EEG. She looks like a bigger little girl than I realized and yet she still looks so incredibly small in that big, impersonal bed. More often, I see her after they’ve declared her dead, after they’ve removed all the tubes, after we’ve tried to wash her hair a little bit, after the swelling has gone down. Her head is turned slightly to the right and downward, her arms are at her sides, and one of her blankets we’ve brought from home is pulled up to her shoulders. For the first time since she was admitted three nights before, she looks like my little girl again. She looks as if she is just sleeping peacefully.

These images are so fundamentally incompatible with one another that I still can’t reconcile them. When I think about the first, I think, “How can that precious creature really be gone? How can that laughter, that playful spirit no longer be in the world?” Those are the moments where, for a fleeting second, I think surely it can’t be. And then all I have to do is remember the second image of my little girl lying dead in that hospital bed and I know that it can.  And is. 

And what I still struggle with every day is this terrible sense that I somehow let her down. I did not do my most important job of keeping her safe so that her daddy could keep twirling her around until she got too big for it. Even though I have let go of the worst of my guilt about not taking her to the ER sooner, I still just feel responsible for her not being here. I can’t explain it any other way—it’s just always there. Every time I picture her lying in the PICU bed, this muddled feeling comes over me and I just think, “Why couldn’t I save her? Why couldn’t I make it come out differently?” I just feel so responsible.

Maybe this is some form of survivor’s guilt and I’m just not recognizing it for what it is. I guess that makes sense, given that what I feel most awful about is how she is missing out on all the damned fun she could be having right now. Why should I get to go on living? Why should I get to enjoy watching Hudson’s daddy swing her younger siblings around one day when she doesn’t get to do anything ever again? Why is she gone and I still get to be here?

These two images—one of my beautiful girl very much alive in every sense of the word, and one of her dead, forever asleep—have been with me constantly these last few days. I can’t resolve them. They just don’t go together.