I read somewhere that when difficult, traumatic things happen, there’s a before and an after — life, that is. And that the before is usually better. Something like that. I’m thinking about that these days, although my thinking is restricted, the tiny little mother mind™ more an infinitesimal mother mind™. A couple of the usual Powers That Be (aka doctors) have treated me as such, and I guess I can’t blame them. One pulmonologist, all of fifteen years old, said You’re worrying too much when I asked what I imagine was one too many questions. I’ve been told that I come in firing, and there might be truth to that, but my friend Jeneva once said that she’d gained nothing for her medically complex son by being nice. This has been my experience as well. Pretty Pulmonologist had no idea about the before and the after, the old and the new. I did appreciate a well-meaning respiratory therapist’s encouragement that you’ll be suctioning with one hand and eating a sandwich in the other, but I’m not sure he meant it in the dark way I took it. Every morning I wake up with a sentence floating out of my head. Write in complete sentences, I tell my students, literally, every single day. The sentences that come out of my head are complete ones, and if someone drew them they’d be floating out of my mouth? ear? hairline? words, punctuated, full. On the first morning of the new life, twenty-nine days ago, it was I want my mother. Today, it was I don’t remember how Manny connected the tubing to the thing. Manny the Guy From the Medical Supply Company had come into the room at the hospital the day before with a rolling cart loaded with boxes. For the next hour and a half, he proceeded to open up the boxes and show me what was inside. A kind of macabre ritual called bedside demonstration and education. I was tired, but he wouldn’t stop. The blue plastic tubing was coiled neatly in the box and Manny told me you can cut it with simple kitchen shears. Then he said make it like a pretzel and while he demonstrated I said yeah, I was a pastry chef and made my fair share of pretzels and he said this isn’t as good as dough and I agreed. At some point I checked out (my infinitesimal mother mind™) meaning my mind had sentences in it like Why is this being asked of us? but Manny was relentless. I can’t leave here without observing you doing the suctioning, he said. We were both tired as Manny had endured quite a bit of traffic (due to a shooting on the 10, he said) on his mission to bring the boxes of machines for Sophie, and I had held court to social workers, caseworkers, the hospitalist (a name that sort of almost offends me), the previously mentioned nonchalant pulmonologist and — where was I? Manny was insistent that I suction, and I was pissed so I pushed the tray table a little too hard, walked around to the other side of the bed and just fucking did it. I’m not sure what I looked like in that moment, but it felt grim and gritty and whether or not I’ll one day be holding a sandwich in my other hand and suctioning with the other, it made watching perhaps the hundred thousandth seizure seem like a walk in the park.
Sophie is getting better. “Slow progress is permanent progress,” said a blogger friend.
Your mermaid looks so good and that picture of her with her aunt is like a gorgeous reflection of genes. It is a miracle of love and of strength that you have survived this and that Sophie has too. There is no power greater than the sort of love you have for your daughter.
You humble me. You humble us all.
Your Sophie looks so much better. What a relief it must be for you all.
As someone who has been in and out of hospitals and surgeries for the past couple of years I advocate a "no kidding" attitude while keeping your cool, esp with the junior staff. Be nice only to those who treat you well, stay neutral with the rest, they don't deserve any emotional link or respect or gratitude. Don't waste your energy on them. Don't let them in.