Currently This

There's stuff I want to write about, but I don't know how to do it and maintain any sense of separateness for my daughter. I learned, the very hard way, to be careful not just what I say about my kids online (because online is forever and so are the grudges held by people encountered there) but also that some stories just aren't mine to tell. So how do I talk about the horror of watching my child react badly to a drug? How do I tell you what I felt without telling you what I saw? So much of how I feel is in response to what she feels and how she felt is one of the things not mine to say.

I knew what was happening which made it easy not to over react, but nothing I have been exposed or inured to before makes it easy to watch her suffer. How does a mother watch the doctors put the needle into her child's arm which delivers the medication that sets her off like a time bomb and not kill the doctor? That's the impulse - as afraid as I am of making a doctor angry, that's how much I want to kill them when they hurt her. I know now how people end up in clock towers.

At the same time, I have to put away my anger because in the thick of it, I have no energy or attention to spare for doctors. To look away from her long enough to toss even a glare would take too much precious time from her. I note the anger, store it away and take it out later, when she is asleep.

Especially hard is trying to make them hear us. We have learned over time that the valves in my daughter's veins are especially small and she needs a very tiny needle if she is to have an I.V. line put in. But doctors and nurses assume that we are all just one step above monkeys on the intelligence scale and could not possibly know more about our bodies than they do and if you find yourself having to fight with them - no, an I.V. line in her hand won't work, it has to be her arm - they assign you as querulous and difficult, perhaps criminally so.

I don't want to know this much about the workings of my child's body, don't they know that? I don't want to know that she needs a small gauge needle, or that pain medications work better for her if delivered intravenously rather than intramuscularly and I don't want to know how much spinal fluid is too much spinal fluid. I want to go back to a time when I was ignorant of all of this, when the worse thing she felt was embarrassment at the hands of a classmate in school. Not to say that I want her embarrassed, but compared to what she is going through now, it seems like the difference between infancy and geriatrics. However hard it may be for a baby to have a wet diaper, it is much harder for a grown man to need his diaper changed.

They make you learn this stuff. If your child is ill and it takes the doctors too long to figure out why and she cries in the night, any reasonable person will grab a medical dictionary and surf the net, trying to learn all they can. Sit with your child in a hospital for a month, holding her hand while they put in a line, and you learn which gauge needles work best. If you have a child and they hurt you are going to make as much noise as you can trying to limit the hurt as much as possible - why do they act like that impulse is so aberrant? Why do they treat an informed parent as the enemy and in the same breath talk about how we're all on the same team here? Hey, Jack - here's the deal: make my kid feel better, you're on my team. Hurt her, you're on the opposing side and I'm a 400 pound linebacker on a beeline for your spine.

I'm tired and afraid and angry. I feel guilty and impotent and small and ineffectual. I want my baby to feel better. I want not to feel all the unspeakable things I can never say out loud and I want to be able to hold them accountable, those little gods who do nothing to help my child.