Friday, September 28, 2007

Photographic Evidence

of Other Joy.

In August of 2003, our Addison was born with a variety of noteworthy (and fret worthy) uniquenesses, among them very broad and crooked thumbs and big toes. In fact, my initial impression of my 2nd and last child after having given birth was a single comment made by my husband while I lay wondering if she was out, if this last half hour really was the full progress of labor. His voice drew my attention to the lit up table at the side of the small room where she was stealthily whisked for monitoring, apparently. He said "she has enormous thumbs!" Little did we know this was a telltale sign of her diagnosis of Rubinstein-Taybi Syndrome. That understanding would not come for another 2 and a half years.

Fast forward to the first of many decisions we'd never anticipated. We scheduled surgery on these 'enormous' crooked thumbs for October 15th, 2005. Her double-wide, angulated thumbs were 'c' shaped. We'd consulted with a surgeon every 6 months since her birth and jointly decided that the time was the best it would get when she was just over 2. Our reasons for having them corrected had to do with her ability to master things like zippers and pencils, mundane things that give a person a subconscious assumption that they belong here, that the world was made for them and welcomes them. You've only to glance at a pair of scissors or even chopsticks to know that the engineer could not have anticipated quarter moon shaped thumbs.

The dread leading up to the surgery went as you might expect: worry, second guesses, pleading prayers in the 11th hour for a light miracle in the form of suddenly straight digits. But the day arrived sans demi-miracle. Our older daughter Cate, had tubes in her ears once, but by they time we'd decided which fidget we'd settle into in the waiting room, the surgeon was out, shaking our hands, telling us it was textbook, internally congratulating himself that he'd have time for a pastry with his coffee this morning. Addie's procedure was a bit more concerning to us, though we kept telling ourselves how fortunate we were that was just her thumbs needing surgical intervention.

We switched the wait up a bit - inside with magazines and florescent lighting among other families, outside pretending to eat an inedible hospital danish, walking the halls. Just trying to pass the time until the surgeon burst out and declared it was all a mistake, her thumbs were perfect, it was the rest of us that had to be fixed, to have our thumbs flattened, widened and bent and when would we like to schedule our procedures - we'd have dibs since we gave birth to the child with perfect thumbs... You might think I'm trying to amuse, but such thoughts do cross your mind when you've put your child in someone else's hands, hands with sharp instruments in them - and your consent to use said instruments.

The end of the wait came. We were eventually brought to one room and then another. Our little cherub still under sedation lying on the gurney, cheeks rosy, eyes puffy -looking like a kid who'd just had a very active day - with one rock solid, huge pink cast on her left arm and a purple on on the right.

In picking 2 different girly colors, we'd originally considered what our 6 year old might delight in, since we knew Addie herself would indicate no opinion. But it actually turned out to benefit us all. When encountering a small child with a cast, people are often moved to tip their eyebrows up in sympathy and give the kid and possibly the parents (unless suspicion of wrongdoing hits them first) all the pity they can muster. Addie would have a lifetime smattered with unwelcome and impractical pity, so we do what we can to sidestep it. The somewhat whimsical choice of her casts sent the corners of people's mouths up before their eyebrows could even consider another direction. So instead of pity, we got conspiratorial "I get you - you like to make the best of it" looks. It's something. I was grateful for it.

People always say kids are resilient. Well, yeah. They haven't lived long enough to perceive any value in letting something get the better of you. There is no choice that they know of. So despite having the bones in her thumbs shaved down, chopped in half, sections of bone flipped, pinned back together, and then completely immobilized in a casts up to her shoulders, she was sitting up and found a way to crawl within 48 hours of surgery. She accepted that this is it for now, perhaps forever and she wasn't going to sit still, so why not get busy adapting now.

Meanwhile, we were in moral agony. She had slight fevers that we gnashed our teeth over, we watched her struggle to get to that state of resiliency, we questioned, re-questioned, cross-questioned ourselves. We worried about how much pain she was in. She is non-verbal and has a high pain tolerance - a bad combination after surgery. We fretted about whether she would ever understand that this was for the better, that the casts would indeed come off one day and she'd be able to play the castanets, if ever inclined. We batted away the nagging thought of the 5 weeks of no baths, no swimming - Addie lives for water. We threw brief thoughts to how she'd feed herself, whether we could still do this or that, how on earth we'd change her stinking shirt, how we would respond to the questions, the looks when out and about, whether she'd notice them. We were not free to fret about these things before the surgery as we still had the procedure itself to consume us. So it had to wait until recovery.

Addie was highly tolerant of everything then, the casts, the pain, the constant concern on our faces. But the quality of her sleep was affected as she began to rock in bed. Weight on knees and elbows, with her bent arm casts in front of her, she'd throw her head and torso forward and then drag it back and repeat. We tried to stop it, but it seemed to be something she wanted to do, it seemed necessary, soothing or helpful to her somehow. So we stopped trying to undo it. We even enabled it by putting cut up sweat socks on her casts to prevent her from scratching herself on the fiberglass as she rocked.

This rocking resulted in 4 inch halo of matted, tied and retied knots in her hair after every single nap and night's sleep. I did not understand how much hair she had until I had to laboriously extract each strand from the others, snaking each out, undoing the disorderly celtic knots. Combing through her hair as she cried, my own eyes would fill and I'd wonder - hasn't she got enough to deal with? Haven't we? Then selfishly, haven't I?


Until she laughed. Until she smiled. Until she looked at us like we had a bit to learn, but she adored us anyway. By then I was familiar with Addie's looks - looks that seemed to say "Don't worry, you'll understand like I do one day. And you'll find most of it light and lovely like I do."

Sweet Honey in the Rock have a song that goes "Well, 'nuff said 'bout that. Still gotta get up in the mornin'." Perhaps it is older than those powerful women, but I know their version. It doesn't matter what knocked you out, they sing, you still get up and try to be decent to each person you meet.

I suspect Addie sings along in her head when we listen to it. Keeping the spirit of the song, she probably changes the words slightly "Still get to get up in the morning."

Wednesday, September 26, 2007

Happy birthday.... my blog. Today it is born, christened "Farmer John Cheese and Other Joy." Size is yet unmeasured, we'll leave those stats open. But happiness, hope and trepidation accompanies this birth, as with the 2 others I've given. No hormone revolutions, at least.

First, an explanation. About 2, 3 years ago, I was in my daughters' bedroom tolerating the 30th change of Polly Pocket clothes in exchange for credit from my 5 year old daughter - play credit. All parents work for them. If we get down and make this Barbie "talk" this morning, we get a free pass (read: guilt free plunk in front of a video) after lunch. So as I'm squinting to remove the tiny hootchie dress and select new impractical accessories for Polly, Cate asks me what is for dinner. Those of you that know me realize that there is no way I would have first hand knowledge of "what's for dinner" unless it was on a plate before me. My husband Michael, lovingly does all the cooking. I grudgingly do all the defrosting and preparing of boxed frozen foods when our family chef is off duty.

So she asks what is for dinner and I holler through the baby monitor to my husband, what is for dinner? The monitor was on a lot in those days as Cate shares a room with her then 1 year old sister whose sleep patterns are still very irregular. I hear a muffled "pasta, " yelled up the stairs, my husband being the only one willing to acknowledge that the monitor only works in one direction.

I tell Cate - pasta. She's thrilled. We are a very noodley family. Particularly if it can be combined with cheese. And it usually can, as Cate knew by that stage in her life. She lit up and asked as hopefully as she was loud, "With Farmer John cheese?"

Farmer John cheese. What is that? This kid is 5. She's lived a little, or so I liked to think. But how would she know the name of some mysterious gourmet cheese without us having exposed her to it? Kindergarten? We do live in Wisconsin, but cheese is not part of the curriculum. Farmer John cheese.


"Farmer John cheese."

"What is Farmer John cheese?"

"Mo-om!" That exasperated 'entertaining with feigned ignorance is SO 4 years old' stretching out of my title - a threat to roll eyes if I continue.

"Seriously, love. I have never had Farmer John cheese. Where did you try it? If we all like it we can get some, but we don't have any tonight."

"Mo-OM!" They eyes go ahead with the roll. Kind of like a roll, anyway. She was still perfecting it at that age. Trust me, she's got it down now. She's 8.

"Mom, we eat it EVERY DAY! You and dad always put it on stuff."


She has had it with me. She just wants to know if she's gonna get the dang cheese or not. But she's desperate, so she just keeps repeating Farmer John cheese. farmerjohncheesefarmerjohncheesefarmerjohncheese!!!

The words blur and melt in repetition. And then they congeal again, changed. I got it. First I gasp with revelation, then I begin to laugh. Not just laugh, roar, guffaw, cry tears of amusement. At first Cate joins me with a giggle, partly glad to see mom in such a state of mirth, but then she figures if she's going to go with it, she should probably know what we were laughing at. She stops and frowns. Meanwhile, I gather what I can to call my husband through the monitor. He must have thought something was wrong, because he's up in a blink.

I tell him that Cate wants Farmer John cheese on her pasta. The words send me into fits again while Michael and Cate stare at me blankly, afraid to look at each other for fear confirmation that mom is whacked could be found in the other's eyes.

Farmer John cheese, I say. We have it every day, Cate said. A slight exaggeration. I tell them I know what it is. It's white and some people buy it in cans, but Dad always grates our fresh.

Parmesan cheese.

Though they both thought it was a bit funny and certainly cute, no one shared my level of delight. I can't explain it myself. Maybe I spent some time thinking what a logical name it is, what pictures my daughter might have in her mind of John, the farmer, whipping up this cheese for us as his life's work. It's a perfectly good name for a cheese, after all. Very concrete, sort of quaint. Maybe I was so riled up because part of me knew that this was going to start to change everything.

And it did. Farmer John cheese is a word we use so unthinkingly that I believe I've asked a waiter for it in a posh and serious Italian restaurant before.

It also changed my perspective. Or woke up a way to look at things that was dormant then. Yes, playing Polly Pockets felt like a cross to bear, but you never know when unabashed joy and delight are going to crash your gloom. I certainly hadn't invited either at the time. But I was graced grandly anyway.

And so my sweet innocent daughter switched on a light for me with her new cheese name, a light that saw me through the next few tricky years of familial unrest, miscarriages and our younger daughter's diagnosis (and accompanying chaos) of a rare genetic condition called Rubinstein-Taybi Syndrome.

PBS kids has a little piece they do between shows where they take a snippet of imagination, pull you along with it for a moment (IE, kid using pots and pans as drums) and then have one matter-of-fact spoken line at the end. "It's all how you look at it." Me and my girls stop what we are doing to watch it.

Yep. It's all how you look at it. Happy Birthday, Farmer John!! Have some pasta.