I think I can, I think I can - I know I can

This is in response to a challenge from AidelMaidel, and my thanks to the MIL who called to warn me that I was tagged:

The Rules are simple:
You have 15 minutes and 15 minutes only. Time yourself.
No making changes once the list is completed beyond correcting spelling mistakes.
Be Honest. It's okay if it's silly or strange or weird or disconcerting.
Resist the urge to explain yourself. Wait and see what other people will ask you to explain after they read your list.

Right, then, here we go.

I can...
* bake things my kids will – and can – eat
* crochet a kipa
* read a map
* tell a story
* give a detailed medical history
* be aware of the person in front of me
* empower
* give great big enveloping hugs
* sit and wait for a child who needs a moment
* give gentle, as-you-need-it-to-be hugs
* be a fierce, loving mother
* be a fierce, loving wife
* hold grudges
* be spiteful
* be strong
* collapse
* make a Shabbat meal that feeds the body and the spirit
* make a home
* make things grow. Most of the time.
* teach children to taste things, smell things, look at things and to think about what they learn this way
* fascinate small children
* make small children laugh. Sometimes from across the room
* be calm in scary situations, and spread that calm around
* erupt
* fold a lotus blossom out of paper
* multitask
* get lost in a book
* plan complexly
* accept my realities – sometimes
* advocate
* write a column that I’m proud of
* be generous, but I can also be selfish
* organize. Anything.
* effect change
* be stubborn
* be determined
* be opinionated
* keep my mouth shut. Sometimes.
* be honest.
* shove aside a phobia to needles
* delight in my friends, but I can also need solitude
* talk to my children about difficult topics
* read medieval English
* read a medieval manuscript
* share what I know
* share my values
* make a decent latte
* make a safe haven for my children
* make the Toddles’ hurts better with a kiss
* help the Eldest heal with a hug and a listening ear (and occasionally, a needle)
* learn to make a needle a way to show love
* make a needle-stick a time for fun and companionship
* recognize an emergency and act
* help my children trust me, no matter how scary the situation
* trust my children to work with me when it counts
* run a decent committee, but I’d really rather not.
* be content in my own skin
* worry about the ways that others see me. But I try not to.
* be content with my religious practice
* want to learn more, to be more actively learning about my faith
* see my limits, but usually because they’ve smacked me in the nose
* always try.

with seconds to go until shabbat

In one room, the Toddles looks thoughtfully at his mama.

I do the pooping and you do the wiping, he informed her. Wrist deep in hot soapy water, she realized that more than a mandate was being offered here. What do you do? The Toddles looked faintly impatient. I do the POOPING and you do the WIPING. The mama glanced at the clock, dried her hands, and set off to put the plan into action.

In another room, a Man was vacuuming while the Eldest was sorting number flashcards.

Dad, I got to seventy-one! Over the roar of the vacuum, the Man smiled at his son. Sensing that the smile was more vague than informed, the Eldest explained. Dad, I got to seventy-one! I'm ahead of schedule!

Off in a fragrant room, the mama looked up from her tushie cleaning, distracted by a roar of paternal laughter. Not a bad way to start a sabbath...

steady, steady me lads: pulling as a team

It's been a needle-filled few days, and we're not done yet.

Below, the Eldest is practicing his infusions on a doll who can demonstrate to children a port-a-cath, PICC line, or venous access. When needles abound, I say, make sure everybody gets to play, hmm?

The Eldest hobbled gingerly off to school today, and I watched him go with some misgivings. Swelling had not reduced much, and he had trouble getting his snowboot on this morning. Should he walk on the foot formerly known as OozeN'Swell? Could he?

The hematologist in charge - the head coagulation guy at the local shop, to be precise, a role that puts him slightly lower than the archangels, but high enough to have slings and arrows fall short - said activity as tolerated. Cranky from a series of lousy communications, I decided to take him up on it. If he was wrong, then I'd have another arrow in my quiver to use (or just rattle) against him. Not that I'd ever use it.

It's easy to paint our situation as an 'us vs. them' sort of thing. Brave mama vs the foolish doctors is a much stronger picture, a much more psychologically maintainable picture than mama and boy taking the punches thrown by life with diagnosis. It's not the hematology fellow's fault that she doesn't understand how to dose the Eldest - he's a rare duck and doesn't fit the dosing protocols that she has. And it's not her fault that the Man is nervous about trusting our experience, or fears that without official MD sign-off on treatment for each bleed, our insurance will some day yank coverage from out underneath our feet. Her problem is that she should be omniscient, able to interpret an apparently tricky bleed in a distinctly tricky kid, when the parents are edging away from doing it themselves. And even the head coag man can't do it via email, despite my precise descriptions. In the end, it's a partnership - and a necessarily flawed one.

Getting to blame medical-type folks for the Eldest's pain, irritation or my own frustration is just a bonus that came with the diagnosis. Someday, it will only be justice served if I grow up and decide to be a doc myself. Then folks can blame me.

By the end of school today, the Eldest had been in a snowball fight (a good sign - boys in trouble are healthy-ish) and been beaned by an iceball, thrown by a bigger kid (whoops). His ear was reddened, his spirits lifted...and his foot hurt. Normal life had been too much, too soon - and had I not been caught up in a wave of righteous indignation, I'd have made the call myself and kept him off his feet for another day.

I've been having a small exchange with one of my favorite ob/gyns about how people use their medical resources. A thoughtful, lovely doctor, she's spent time considering her patients. Do they want to be faced with a grumpy mama hen, who is going to chew them out? Or do they want a teammate, learning alongside them? I suspect she switches gears gracefully. But she's only half of the equation.

I've just finished rereading Atul Gawande's book, Complications. It's a fine, fine book and a fascinating one. In it, Gawande talks a bit about the challenges of medical decision-making. Specifically, the ethics of handing the power to make medical decisions to the patient. Do they want that power? Are they able to understand the choices they make? Are they able to make the choice that will best serve their own desires?

Tonight, when I pulled out another 750 units for the Eldest (his second such dose today), I looked at the tangible price of our teamwork. It's a flawed team, but I'm coming to see that my slide from frustrated advocacy to (okay, passive-aggressive) contention hasn't helped us. Exhausted, late night conversations with the Man have laid the groundwork for change here at home, and we're developing an incident report system to help us track incidents, treatment and ultimately push change in the Eldest's care. But what we really need here is a clarification of our own desires: what do we want, the best-tailored care for our child, or to avoid taking more responsibility for it?

As parents who do the IV pokes, who analyze and report bleeds, log incidents and track treatments, bleeding patterns, we have a lot of knowledge, and a lot of responsibility. Our HTC offers us more, and is willing to let us be independant enough to treat typical bleeds on our own, calling in only for support or if a bleed fails to respond to treatment that's worked in the past. They'd check in with us annually, or more often if we need too many refills on our prescription.

Independance with backup, less drama, controversy and more day-to-day living. And exquisitely tailored care, thanks to a shift in the structure of our medical team, moving a good deal of the power from the them with their targets painted on, to us. My brother likes to point out that I don't want to be part of a medical team, I just want to have the doctors agree with me. He might be right, and that's a little humbling in the hubris implied. But we could neutralize me, we could stop bullying, resenting and arguing, and just take the responsibility we're being offered.

Do we want to? I do (though I'm a little scared), but does the Man?