shhhh - experiments in progress

If you are around this weekend, don't bother stopping by - we're out of town.

Okay, so the kids are going to be home, but the Man and I will be a whole two hours away. All weekend. Yes, we just got home from the hospital, and yes, everybody's still recovering from the four weeks of nosebleeds that sent us there, and yet. We're leaving the kids, and bugging out. All the way to Connecticut. Got to be done.

(okay, can I say now that I'm scared a little spitless?)

We've never left the kids before. On our tenth anniversary, the Man and I barely considered the idea of a solo vacation before booking a cabin that could sleep four. (barely) How could we leave them? Leaving a child with a bleeding disorder (nevermind allergies, that's another post) means you need to train the person who looks after them, teach them when to worry, when to take the first measures, when to call in the cavalry. That caregiver has to have nerves of steel, and an impeccable poker face. They need to be able to ask the kid why he's limping, without giving away anything roiling on the inside. It takes real courage to accept that an emergency is happening in front of you, and *you* are the one who has to deal with it - denial is not an option.

So, nerves of steel. And a handy person with a needle wouldn't hurt, either, since that's how the Eldest gets his clotting meds - but hey, we're spoiled. There's a home care nursing service around here, so needles are optional. But training? can't get around it.

Training, alas, means translating. It means walking a person through the broad strokes of the disorder (moderate vs minor vs go to the ER now bleeding), which is easy. It also means walking a person through the labrythine processes of my brain. Less easy.

worry here, watch there, keep an eye on that - the kid tends to fib here because he hates to stop playing. This type of bleed tends to stop and start, don't let it slip past you, and there's that knee that - and remember these three volumes of his medical history. Can't assume the docs will remember the specifics, especially the Eldest's funky immunology...and have you engraved my cell number on the inside of your skull yet? You will.

Training is really code for translation. Welcome to our reality, says the training. I'm now going to be irrepressible calm and pragmatic as I walk you through it, and I'll make jokes to show you just how manageable this all can be. Ha ha ha. Well yes, I'm glossing slightly to stave off the chance that you'll scoot out the door. Pardon me while I flash all of my coffee-stained teeth. Yes, I think that's a smile. It's not? Dang. Translation is hard. And time consuming.

My parents live three hours away. The Man's parents live 5+ hours away. Initially, this was kind of isolating for us - the boys' various diagnoses mean that we live a life foreign to the rest of my family. The geographic distance between us keeps that foreignness alive: my father cannot imagine a world in which he would stick a needle into his grandson. I can imagine a world in which my husband and I poke our firstborn with many, many needles. While, mind you, the kid grins at us. Takes some explaining to make people understand that. Takes some showing, also, to persuade folks that this grinning kid isn't actually martyred - he's just living a different kind of normal. And let me tell you, all of that showing and explaining and translating gets wearing.

But time passes. We visit, they visit, and over time the translation has become less needed. Some people got it faster than others, some are still scratching their heads a bit. But we're getting there. So, I took a chance: months ago, I called my parents.

We'd like to go to a conference in August, I told them. Can you babysit?
Yes, of course, said my slightly offended parents. We have been waiting for you to ask.

Um.

I hauled them in for a weekend, and grilled them. What would you do here? When would you go to the ER? Call for an infusion? I kept a suspicious eye on my skeptical father, always ready to tell me I'm being neurotic. Which I often am. But this weekend, I told him firmly, he has to adopt my neuroses. My kid, my rules, I told him. Meekly, he nodded.

Will my parents be sufficiently paranoid? Will they be sufficiently calm? Will they toe the line of safety vs acceptable risk that the Man and I have slowly, painstakingly marked out for our family? Will the Toddles escape and manage to finally set the house on fire? And did I mention that we live in a floodplain? Yep, I'm nervous. I'm really, really nervous.

But I'm going to pack anyway.