Dealing with death is harder than dealing with diabetes, and I often remind myself of that.  The worst days are when I feel swamped by both at the same time.  On such a day recently I was driving in the car and thought, things have never been harder, and I’ve never been stronger.  They are both equally true, and embracing that, I suddenly felt  . . . victorious.

Looking back, I realize that I have been balancing on the head of a pin, waiting for the pain to end, waiting to recover, to get back to the way things were.  But, of course, the way things were is dead and buried with Lindsey. We left it behind in the Pediatric Subspecialties conference room at Kaiser.  Lindsey’s never coming back, and diabetes is never leaving.

I have often said that the only way to love Ainsley is to embrace her diabetes. When people are afraid of it and reject it, they reject her. It is an inseparable part of her, and it does not make her less desirable, less able, or less fun. Diabetes is a hideous hogbeast, and it is just as much Ainsley as her chubby cheeks and spunky personality.

I want her to see herself as such, as a whole person, not her and then that horrible thing. I don’t want her to fragment herself that way.  I know that if she does, she’ll resent the pain and the burden and the singularity of it more and more and grow bitter.  She might try to hide it, or ignore its demands and not take care of herself.  I want her to be happy and secure in herself and ok despite this shitty card she’s been dealt.  Hello Kettle, they call me Pot.

How shall I be bitter about the cards I have been dealt, and ask Ainsley not to be?

I will never be ok with my sister’s death or with the fact that we are totally dependent on the availability of modern medicine to keep my daughter alive. But I think my moment of victory marked a turning point for me, and for us. It was the point when I realized that I wasn’t balancing on anything at all; I was just standing still.

My hideous hogbeasts aren’t ever going away. They are me, and we are we.  Whole and ok we will be. Hogbeasts and all.