a little bad

A week ago Friday everything changed again. Another shoe dropped when Vivi's brain went from epileptoid to epileptic. She had the first of what would be three petit mal seizures in a week.

I don't know how to parent this way. I pride myself on being a good mom. We're good parents. We raise our children ourselves in a culture where many people phone it in. John and I pick the children up every day from school--not a nanny--because seeing their faces at the end of their days is the only way we can stay connected to what's really happening during those hours away from us. Good eyes? Sad eyes? Tired eyes getting sick? We see everything and we report to each other so we can respond best to whatever they need or communicate to us. This is a trick of the trade I've picked up the hard way--part of my capital as an experienced mom. Just like I know how to navigate birthday parties and parent-teacher conferences and crushes and jealousies. Let's just say I have executive experience in domestic policy.

But Vivi. She brings me into uncharted territory. And not just regarding her. How do I ensure the children have a perfect Halloween week instead of one in which they find out their sister was having seizures. I don't want them to remember Halloween for the rest of their lives in the context of when things got bad for Vivi.

There are so many other aspects to this. Now we really need to medicate her and that will change her in wild, unspecified ways. We just got two reliable babysitters, offering us a tiny bit of flexibility for the first time in our NYC lives, but can we ever leave her with laypeople for care since this has changed? Can anyone besides us or medically trained people ever keep her? What if we're at an event for the children and she has a seizure? Can we take her everywhere? Our policy forever has been to tote-along the children, wherever we go. Pack and carry kids: trips, restaurants, overseas flights, NYC. That's what's worked for us. Will it still work?

I don't think it's directly related to her brain, maybe rather to her teeth, but the entire week Vivi hasn't slept well. Last night I was up on and off with her until 4. The world doesn't stop for Vivi. Papers and meetings and soccer games and classes and chaperoning fieldtrips for the children still persist. I don't know how much elasticity is left in our model.

We're feeling very happy and settled in NYC these days. We love the city, its opportunities, its stimulating options for every waking moment, its diversity and plurality. The children feel happy here. They think of it as home. But it has us very far from family and their helping hands. I hope we can adjust. I hope things don't get worse. Surely, this is the mantra any family eventually finds when they have a disabled child.