Tuesday, October 23, 2007

More FAQs

The italics relate what I think but don't usually say, the regular typeface is what usually comes out of my mouth.

Moooo-ooom, where aaaaaare yoooouuu???
Hiding.
Right here! What do you neeee-eeed?

Are you busy?
Who me? (looking around to see who else could be addressed here) Nevah.
Nope. or: Yup. Can I call you back? or: I have to leave in five minutes, but I can talk while I load up. or: Let me call you later. or: Do I look like I have nothing to do here? Hello?

Wow, you sure have a lot of kids. Don't you know what causes that? Guffaw, guffaw, guffaw. Snort.
What I used to say to strangers in Costco: "Yes, we do, and apparently (big, broad smile, batting eyelashes furiously) we're better at it than you." This is a little harder to carry off without a wedding ring especially since...

Have people really asked you if your kids all have the same dad?
Yes. I'm glad you find it weird too.

How's your milk supply?
Huh? Excuse me. What did you just say?
It's fine, thanks. I've always had enough milk to help out in a famine in some small third world country, this time is no exception!
Smiling cheerily, blushing furiously, exiting quickly. (For the record, this question has been mostly posed by people in an actual Need to Know position as well as some very close friends, but what is it about bre*sts and/or breastfeeding that seems to require complete strangers to opine? Sheesh!)

How do you do it (all)?
I have no idea. Not a clue.
Oh wait. I did actually say that once. To a recently separated pastor. I feel bad for being so flippant. Yikes. Well, what I usually say is more like this: A lot of people pray a lot. They pray all the time and they tell me about it and how much they love this little family. Some of them I don't even know. I write, sometimes here, sometimes in prayer, sometimes just to blow off steam. I have friends and family who kick in a little time every week--so the house doesn't come apart and so I can do the actual mommy things with each kid. I make an effort toward good self-care (rest, exercise, food, vitamins) because I cannot fall apart on any level. I try to use every moment for something productive--I often do lesson planning while the big kids are in gymnastics or read stuff just for me if Q is napping while we wait. Throwing a load of laundry in before I hit the shower is a good way to get a leg up on the day. You should see my lists and schedules and calendars and spreadsheets. I redo them regularly, adjusting as necessary, in order to make sure nothing gets missed. Many people are fine without things like chore charts, etc., but it's become quite a deal to track all the daily details.

Perhaps the most important thing, aside from the rampant and fervent prayer that swirls around this place, is this: Almost every person I come in contact with is the very model of support and kindness. Those who are not have proven such an emotional and psychological drain that, with practice, it has become almost an easy thing to kick those opinions to the curb (most of the time--I'm not impervious.) Of course one must do self-checks to see if one is in fact keeping the balls in the air as necessary, but once one has that periodic confirmation it is a waste of energy to linger over negativity. Besides, isn't everything a lot more fun if you can just get done daily what you must, have some good cheese and sweet pears, laugh a little, then some more, and go around hugging and kissing on your dear ones? Yes. And see, if one is investing anything in self-castigation, one never gets to the good stuff. Do you have that kind of time? Me either.

Does Q eat real food?
No, he eats sawdust.
Every day!

What does Q eat in a day?
Think, think, think--open the "feeding" file in your brain and download. Not the "therapy" file, not the "meds" file--think "food," silly. FOOD. There it is. Up it comes. Oh, very poor choice of words there....
Let's see. He eats about 14 oz. in pureed or slightly chunky (in pureed) fruits, veggies, or some combination thereof, a Yo-baby, about 2 tablespoons of coconut milk or 4% cottage cheese or organic half and half, about 1/4 - 1/3 cup DHA fortified baby oatmeal, about 4 oz. of liquid (usually diluted apple juice), the occasional melting cracker or cookie. He nurses five to twelve times a day, depending on whether or not he's feeling well, needs more snuggle mommy time, or is growing. Vitamins are added to his breakfast. We're currently working on getting him more variety in textures since he's acting like he really wants to chew appropriately.

Will he ever eat normal food?
Nope. Just the sawdust, poor thing. You'd think we'd at least add some salt or cinnamon, for heaven's sake.
It's anyone's guess at this point. He doesn't sit very well, rolls over sporadically, can't really contemplate feeding himself. But his initial prognosis would have him doing far worse than he really is, so who knows? Maybe he does contemplate feeding himself. Maybe one day, he'll tell me all about it as he shovels spaghetti into his mouth. Good image, that.

Are Q's issues rare?
Do you have a couple of hours? Big breath.
I suppose. There's dysphagia (difficulty swallowing) and dyspraxia (difficulty speaking)--more rare than say, blue eyes, but not unheard of. I don't recall the precise statistics on Polymicrogyria, but I think that when Dr. Dobyns began his research (in the late 1970's?) there were something less than twenty known cases in the US. I believe that there are currently three to four hundred known folks living with it now--worldwide. Please correct this if I'm wrong. Interestingly, there are likely many people who have some area of PMG in his/her brain but won't know it until they need an MRI for some other reason. Those who find themselves in greater need of "help" usually have larger areas of PMG visible on films. (Q's PMG is "diffuse.") Cerebral Palsy, spasticity and epilepsy are rather more common. Developmental delay--is this technically a diagnosis? Or part of a diagnostic assessment?

How do you answer the question: Why do you homeschool?
Do I have to? No? Okay then. Back to my bottomless supply of bon-bons.
It depends on the situation and who is asking. Does this person genuinely want to know or do they want me to confess that I'm a.) incapable of teaching my children or b.)secretly bent on turning out socially incompetent, pathology-laden misfits?

I often respond with something along the lines of: "Oh, it's so cool!" or something similar (because that's what I really think) before speaking about some particular and recent experience the kids and I have had that seems to encapsulate the blessings of this road for us. e.g.: Yesterday, E's head pops up, mid-spelling lesson. She says, with a far-away look in her eye, "Boy. Life sure would be easier for penguins if they had opposable thumbs." Oh joy! Don't you just love it when they take the raw information and their own spark turns the knowledge into a roaring blaze of wonder and excitement?

Snarky confession: As a rule, I find that the act of overwhelming people with information tends to shut the conversation down. This isn't always my intention when holding forth on a familiar/beloved topic, but I can't really stop myself. Yet. Now we come to the part of me that thinks I should be a nun or something so I can spend my days working on disciplining my brain to just do what I want it to already. That part fights with relish the part of me that doesn't particularly want to have a polite chat with anyone looking simply for a reinforcement of their world view. Do you see how these parts of my brain like to thrust and parry? Are there meds for this? It's making me tired. Back to the subject at hand.

If the person raising the question wants to delve seriously into it or I get wound up and rather cheerleader-chatty, I talk about how it's too bad that our society doesn't do a better job of recognizing that every spot on the educational spectrum is absolutely necessary for several thousand somebodies and that kids deserve to have the best fit possible while we do our best to help them become adults we'd feel safe leaving our grandchildren with. I have believed this down to my toes since before I took my first Education classes, so it's not hard to state it emphatically, thoroughly, calmly. This usually turns the direction of the conversation while kind of validating the choices and opinions of the person who began the conversation--which is most always what he/she really wanted anyway.

Validation. What a powerful word.

Following that rabbit trail... Most of the time people who want to pick a fight with someone over any potentially controversial topic are so stuck in an "I'm right therefore you're wrong" mindset that it's difficult for them to see the trees for the forest. In other words, the individual points are sacrificed on the bigger altar of party affiliation, religious preference, or vegans vs. omnivores. When plain ol' people sit down and explore their details together, calmly, without being threatened by their neighbor's bumper stickers or lack thereof, it's often surprising to all concerned just how much more they have in common than in enmity. It's hard to maintain an ad hominem attack when the hominem in question becomes an individual with a family and a sense of humor and a face made in the image of the Divine.

And while we're here, let's be honest: don't we all have rather an "it's better because it's mine" approach? Be it our car, neighborhood, career, kids names, whether or not we stay home with kids, or our/our kids' schooling experience. May I suggest a truce with humanity? While working in our own sphere(s) to construct the arguments which support, legitimize, and make up our own views, perhaps we can be as gentle with each other as we'd like others to be with us. (Someone said that better, didn't they?) But that could also be part of the problem. On this broken, beautiful, messed-up planet, many of us have experienced violence and trauma and without even realizing it go on to find ways to perpetuate that same horror or worse on innocent others. I guess if that's a person's baseline, then some serious therapy is in order. Let's start with pasta. Later we'll move on to flowers and massage, m-kay?

In fact, I think I should find a way to make that an outreach effort. Something like taking big plates of steaming egg noodles drowning in browned butter and myzithra or the simplest Alfredo ever (cream and Parmesan) to a shelter, then plopping huge pots of flowers down on the tables (would seed packets be better? Longer effect? Ownership of the plant and it's product?), and popping out a massage table like a jack-in-the-box, with eggplant colored, lavender scented Egyptian cotton sheets and a huge, thick bath sheet for warmth and snuggly-ness. This is not a bad idea that's forming here. Serotonin boosters in the hot pasta and lush scents and vivid colors. And in the sacred power of human touch. Taken to people who would just plain never get this kind of care from anyone else ever unless a stranger delivered it to them. Unto the least of these...

Hmmm..... Could someone please squeeze another day into my week?

Well, that's it for now. I'm off to bed. Oh do go love on your honey and punkin-littles. Shoot, wake 'em up if you have to--the moments pass so quickly by, don't they?

1 comment:

Melanie said...

The "he eats sawdust" put me over the edge into a fit of hysterics! Thanks for the good laugh, it was very much needed! I love reading your blog.

Melanie
www.danielspranger.com