Saturday, December 15, 2007

Taste Another Existence - parts 2 and 3

As stated 2 weeks ago: Brown writes with precision and unsentimental honesty about the shape his family's life has taken around Walker's routines. The writer's willingness to reveal the irony and amusement in parts of this life changed by disability is refreshing.

Parts 2 and 3 finish out the piece and are now available. Click below.

Boy in the Moon

Tuesday, December 4, 2007

More than Swimming Lessons

In the realm of teachers, therapists, doctors - paid professionals in my daughters' lives, I have become a little more discerning (a nice way to say judgmental or skeptical) over the past years. Addie in particular is no easy knot to untie for anyone, including me. But she knows with consistent certainty what she needs from people before she'll deliver the goods: whether the demand is an arm out for a blood pressure check, the right ASL signs, lining up nicely, hitting the right button on a talker, cleaning up a bucket of toys she just dumped, etc. But Addie is keeping her secret combination close and inside. So we guess and guess again.

But a woman we met about 18 months ago never guessed. She didn't try different combinations, she had it down before she even met Addie.

Addie loves the water and always has. This love of water has been documented as a commonality in those with Rubinstein-Taybi Syndrome. She has no fear of water and will play in it regardless of it's container: a pool, beach, bath, bucket of water, dog's dish... Regrettably, she also finds it great fun to drink from all of the above.

Addie started individual adaptive swim classes on Monday nights a year and a half ago. This is when Christine Sparrow, an occupational therapist and swim instructor, came into Addie's life for a half hour each week.

When we resumed swim class this fall, Addie had a really hard time with the lack of freedom. She had spent most of her waking hours this past summer in a zero depth outdoor pool where she practiced her water feats and grew stronger and more bold every day - on her own. We stayed in the vicinity, but tried not to inhibit her with too much watchfulness. The outdoor pool closed Labor Day and swim class started a few weeks later - indoor pool, very loud, and way over her head. Christine still has to hold on to Addie as she cannot swim independently yet. This was so bitter sweet for my little waterbug - happy to be in water, but angry to be at someone else's mercy.

Truly, she was never really at Christine's mercy - there was not a pitying, patronizing, underestimating hint in a single interaction from moment one. Christine offered Addie the great respect of assuming that even though Addie cannot speak and has intellectual differences, that she is capable of understanding, and making her own choices about what others ask her to do.

Addie would cry in the beginning. Cry and fight a bit. But Christine kindly acknowledged Addie's fury and just held on tighter as she moved Addie through the instruction, giving her a chance to respond however she chose to respond to Christine's directions. And how ever Addie did respond was always received as a decision Addie made, even when the response was to ignore the direction. Christine never once looked as though she wondered if Addie was "getting it."

Without my being able to pinpoint the time, Addie gradually concluded that Christine knew what she was talking about; that kicking really does get you to the ball floating away, that blowing bubbles in the water is fun, that putting your eyes under gives a great new perspective of beloved water. Suspicion in Addie grew - suspicion that the person holding on to her actually wanted her to be free in the water. This became a certainty germinated by Christine's unwavering faith that Addie will in fact, swim on her own one day.

Addie chooses to do nearly every last thing Christine asks her to do at this point. I'd love to have some of Addie's underestimators (among them therapists, doctors, teachers, even family) come and observe this half hour on Monday nights. I would invite the ones who let their hunch that Addie either cannot understand their directions or is not capable of following them shape their interactions with her. What these well-intentioned, but bumbling few seem to be unaware of is that their doubt can be felt, even by Addie - particularly by Addie. They are led by the down-side of uncertainty. Christine is led by the up-side of it. Addie feels this faith and acts on it.

Monday night was the final class of the semester. There are other kids and young adults in the adaptive swim class at the same time, but each learner has their own instructor. Maki, a bold fellow a few years older than Addie zipped around the pool, his instructor following behind. Maki has Down Syndrome, though with a pride thinly disguised as amused exasperation, his father says he has "Up Syndrome." This kid is full of energy and a solid sense of self (read: mischievous). During class this week his swim instructor and Christine talked quietly for a second at the other end of the pool before asking Maki to show Addie how he goes underwater. Maki dipped down with verve and popped up like a Jack in the Box. Addie found it delightful and Maki was clearly glad to show his stuff. Christine then suggested to Addie that she do it for Maki. Without any ado, Addie swiftly complied by putting her head up to her eyebrows under. After popping up, she did not cough and sputter like usual, because Maki hadn't. In fact, she was more concerned that he was as thrilled with her trick as she was with his. Not only had Addie done what the big boy had done, she succeeded in producing the response she wanted - the same giggle she offered Maki was returned to her.

Christine has a patient way of reminding Addie of her power, of her possibilities - a way that is rare, simple and amazingly effective. Or maybe it isn't all that rare, but rather buried under the urge for instant gratification for many of us. We aren't willing to wait for this process, for this faith in another to take root. We want our directions followed "because I said so." But Christine has a different answer to that question we all (including those with intellectual differences) take a moment to ask internally when given direction - "why should I?" Without words, but through consistent, clear demonstration of belief, Christine answers "because you can."

Sunday, December 2, 2007

Taste Another Existence

Part one in a 3 part series by Canadian reporter Ian Brown about his life with son Walker who has CFC Syndrome. Brown writes with precision and unsentimental honesty about the shape his family's life has taken around Walker's routines. The writer's willingness to reveal the irony and amusement in parts of this life changed by disability is refreshing. Be sure to hit the site again the next 2 Saturdays for parts 2 and 3.

The Boy in the Moon

Saturday, December 1, 2007

Silenced by First Snow

The first snow of the year always silences everything. The sky is bright, even at night, but all sounds are muffled as the white accumulates.

We've a rain/snow mix here, but before the rain came a nice covering - enough to play in. Cate spent about 8 hours outside today, which she hasn't done since the free days of summer. Right now she's inside, in the bath, but still giddy from the clear change of season today.

While I was out gathering supplies for a snowed in evening (hot chocolate mix, gingerbread house kit, wine - a low effort evening in, that is), my husband Michael took Addie out in the snow. It didn't last long.

We'd taken her sledding 2 winters ago. Unfortunately on the first descent, she and I got whitewashed with crusty, icy snow as our sled cut sideways into the packed path. She cried for the next hour and refused to sit with anyone on the sled again. We couldn't leave yet, Cate was just 6 years old - prime age for endless hours of trudging up the hill and skidding down it tirelessly. But since then Addie has had a love/hate relationship with winter - she loves cold air and wind - it makes her babble and jibber jabber with gusto - but she despises the proximity to snow.

If the girl's taught us anything though, it's to keep on trying. Michael took her out today. She took her mittens off. He put them back on. She took them off. He put them on, she...well, you know. It was too cold to let her feel the snow for long with bare hands, so they had to come back in.

We mulled it over a bit. Mittens. It would be like me bundling up for some "fun" outside and finalizing the preparations by putting duct tape over my mouth. Addie cannot "speak" with mittens on. She cannot sign with only a thumb and four bound fingers. Whether she's got anything to say or not, having someone bind your power up is probably not something that any of us would gladly comply with.

We'll try and find gloves in her tiny hand size, but I have my doubts about keeping her chunky digits in those. I think the prevailing response to this realization will be that she goes outside in the winter, just as in every other season, with nothing on her hands. And to be honest, I can already foresee that it will also mean that in a subconscious act of solidarity, I will often forget my own gloves.

Stay warm!

Thursday, November 15, 2007

Under the Big Top

I have not had fingers to keyboard in quite a while. Action packed few weeks - some good, some requires more perspective before I can articulate the brighter sides...

Among these things is that Addie's sweet life has been further complicated by the uncovering of possible additional conditions. Though she feels no different today than she did yesterday, a few more fragile platters just got stacked onto the heap my husband and I are trying to balance along with everything else. I realize I am tired of one thing and one thing only: making decisions, weighing options, hedging bets... I would love to go a week without a single monumental decision to make on Addie's behalf.

In a doctor's waiting room, tired and resigned to watching my kids play with the germy toys there before hearing another professional opinion, I found an old notebook in my diaper bag (disguised as a huge purse). The first page was dated 4/14/07. Spring - hope, new beginnings and whatnot. I imagined I'd find a few spring thoughts in it to warm me up this cold late fall day, maybe shore up my attitude a bit. But instead I found words for my exact current November state of mind:

She is at the top of the ladder, both pleased with herself and oblivious at the same time. She doesn't look down, nor from side to side. She does not notice the bright lights against the red and white stripes. Her eyes are slits, slightly rolled back. Rhythmically she throws her head back, straightening her arms, then bending her arms and rolling her chin down to her chest again and again. Her mouth is working. The chewing motion doesn't fit with the low hum she makes. The hum changes with the rocking, but the rapid chewing is at a constant faster pace than all else. What she chews is not of interest to her, just that it can be chewed for the duration without losing mass or texture. Her tiny little block feet slip slightly from side to side, but amazingly not off the rung they touch.

I grip the base of the ladder. There is no blood between my knuckle bones and the skin covering them. With my eyebrows knit and my jaw clenched tight I look more like a man than my short spikey haircut otherwise makes me look. I don't notice the lights or stripes either. My mouth also works. Be careful, Addie. Good job climbing. Can you hold on and climb down now? Don't answer me. Just do it. Spit out what's in your mouth. C'mon, Love. Come down. Cate. Stop it. You need to wait.

My voice morphs with each phrase - cheerful, hopeful, terrified, pleading, annoyed, angry. Cate is circling around me, asking for a litany of things: a snack, a story, a hug, help with homework, a moment's focus, time. She is right to expect all of those things of me and more. But in her asking, in her rapid fire, the answer she anticipates is clear. No.

My terror deepens at Cate's unintentional reminder that I could lose them both. I run through the options. If I go up the ladder it will likely slide with my additional weight. If it doesn't and I make it up, I might startle Addie and she might let go. If I keep talking she may try to respond the only way she can - in sign language with her hands. And what is in her mouth? What if she chokes? I could reach for my phone, but the ladder moves with each rock, so I cannot let go myself.

But there are people around. Watching. Just a few because we are in the smallest side ring of the circus. Most eyes rest comfortably on the main event - although it's suspenseful, the eyes already know the ending. A few watch our side show in silent expectation. Some watch furtively, checking our show against their own private ones - finding either relief or anxiety in the comparison. Others discuss my options, risks, give odds and place bets.

The music reaches no crescendo, the lights don't fade, the people don't leave, the tent isn't packed up, our show does not end.

Wednesday, October 17, 2007

Grandma's Mantel

Having a child with a disability means different things to different people. Just as having any child at all does. For the most part, it feels like our family is fairly well equipped to not only handle having Rubinstein-Taybi Syndrome in our lives, but I also believe that we have, and will continue to ensure an environment where both our daughters can be the happy, healthy, loving girls they were meant to be since before time began. Not that we don't second guess ourselves, but we we fall back on fundamental trust in our parenting instincts. What most dreams for our kids boil down to is that we want them to have a positive impact on the world - we want them to change something. Both our kids have fulfilled that dream for us in a variety of ways. My husband and I are like eager moviegoers who already found the opening credits surprisingly delightful - we sit nodding with reason to believe this is gonna be good. What is most exciting is having no clue what happens next, what other moments of delight will be strung together before the culmination. We're not even trying to guess. Normal, typical, predictable are things that we've never held closely, never clung to as values.

That's all a disclaimer for the tale I'm to tell here. I tell it through a headache and cheeks still stiff from dried tears. Many parents of children with disabilities who have developed healthy perspective over time will not hesitate to admit that there are certain things, certain seemingly unimportant things, that shove them over that cliff into an ultimately manageable, but scary sea of feeling cheated, feeling injustice either for their special child or for their family as a whole or for themselves. But they do have that healthy perspective to use as a personal flotation device, if needed. There is always a trust that feet will find higher ground again, so these deep end drops are accepted from time to time.

Today I lost my footing and fell over just such a cliff into just such salty water.

Addie goes to 2 schools. On Monday and Wednesday she is in the early childhood special education program with one or 2 other kids, depending on the day. On Tuesday and Thursday, she goes to a regular preschool class with about 16 kids - mostly of typical abilities and some not-so-typical. The Tuesday and Thursday school had their picture day today. Since she's not scheduled to be there on Wednesday, we had to make a special trip to get her photo taken before her other school started.

I prepared for this: she bathed and smelled good for the camera (?), I picked out a snappy outfit, I did her hair in a way that generally gets her a nice helping of attention and compliments (can a mother say her daughter has gorgeous hair and be believed? Or does an unbiased 3rd party need to be the judge?). Still, we were running late. It was a rushed morning where I had no time to think of anything but the concrete necessities - backpacks, jackets, change of clothes for school after the picture. My 3rd grader had a late start day at school, so Cate came with us.

Addie was confused when we got to the school, which I'd anticipated. I showed her my camera and told her that we were going to take photos and then go to the Wednesday school. She happily played in the very familiar gym while we waited for her turn.

Addie's name was called. I carried her to the lights and the backdrop screen. I could immediately feel her tighten every single low-toned muscle in her body. She was telling me and only me "No, mom, this is not what you said would happen. You showed me your camera. This place has screens, big lights, strange people and a huge camera." My response overestimated my own abilities and underestimated Addie: I signed and talked to her, told her what each thing was, showed her the sample photos from the order form and then, thinking I had done my job, went to plop her on the pose chair.

Here's a fine example of not heeding my own advice - to teachers, therapists, babysitters, etc. I tell them the surest way to get her not to do something is to manhandle her instead of talk with her about it. Despite the fact that she is nonverbal, she still appreciates a 'say' in things, like most 4 year olds. If you want her to go to the door, all you have to do is ask her to sign door and then she feels like it was her idea and happily complies. But no, I broke my own rule and tried to plop her.

The wobbly rock on the bluff gave way. In slow motion I fell headfirst into the sea. Just a second before plop completion, Addie's legs and back arched so that her sister could have used her as a hula hoop. The chair flung backwards. She was not concerned with my ability to hold her, falling or injury to anyone. She accompanied her contortion with howl to make her message clear to the general population "I will not have my picture taken by you people today."

But I wanted this picture. Cate's school photos came back last week and they are beautiful. Addie has not had her photo taken professionally since she was 6 months old. I wanted to give the grandmas the gift you give grandmas for the holidays: the hinged 5x7 double frame with my 2 girls and their goofy fake smiles, smiles that belie the pre-flash facts: a grown-up stranger is acting silly so I'll smile, but I'm slightly embarrassed by it, so including my bottom teeth in this smile is throwing a bone to this photographer. When you see these pictures on the mantel you can almost smell graphite and tempera paints, you can hear lockers opening and closing and you can feel the click of a ring binder... The photo says "I am a contributing member of a community called school. Just like you were."

I didn't even know I wanted this photo so much. It's only now that I realize it. But parts of me were very aware of this desire or I would have said forget it. Not worth it. No. I was willing to put us through more than I am usually willing to do. I didn't cut our losses. I sang, I coaxed, I signed. I jumped up and down, I ordered Cate around, telling her to stand here and do this or that in the hopes that Addie would train a sweet grin on her sister. But I did not do any of this in a hopeful, jolly way. I had already given up - her body told me first thing that there would be no photo today. I knew this, but I cajoled in a desperate way - shaky in the voice, too blunt with my movements, like a spoiled child that realizes they won't get what they want, but cannot stop demanding it. If it were possible to measure Addie's understanding and connection to her mother's mindset, the word we hear so often in her evaluation results - delayed - would be replaced with advanced or acute or gifted. Knowing that mom didn't think it would happen strengthened Addie's resolve to ensure it did not. She walked away, she pushed the props away, she wriggled, all while I continued to try to catch mercury.

I was sweating and huffing when I glimpsed another family or 2 come in. At that point the photographer held up the tiny display screen on her camera to show me a dark photo. It was the outline of Addie looking down with a frown on her face. The photographer raised her eyebrows hopefully, "How's that? That's cute, isn't it?" Ah. Ok. I get the picture. We'll go.

With tears roiling in the back of my throat, beginning their trip up north, I averted my eyes and quietly answered the photographer's question by telling her that if there were any that she would have been proud of, go ahead and make proofs, but if none of them meet her standards, don't even create an ordering package for me.

I brusquely ushered Cate and Addie out of the gym, past the families with combed and pressed preschoolers - I could see their mantel photos for grandma in little bubbles over their heads. When we passed the lobby of the school and the air from outside hit my face, the tears found their freedom. As I struggled to keep them in and began to blame myself for getting upset and unreasonable in front of my girls, the despair found a new dimension and a quiet, but telltale sob started in my throat.

We got to the car and Cate was already crying. She's a crier, that one. Wonder where she gets it. I quickly tried to explain that I understand that it's no big deal that we didn't get a photo, but that I just was gonna be disappointed about it for a few minutes and then move on. I didn't tell her that I was wondering if we'd ever get that mantel photo for grandma. She would not have understood - how can you be ok with Addie not being able speak, to say I love you, but lack of a school photo sends you to the depths? I can't tell her that a dream isn't always grand, that sometimes it's simple and small, but cuts you just as deep, sometimes deeper, when it eludes you. She wouldn't get that, would she?

From the backseat, Cate wiped her eyes and sheepishly ventured, "Mom, you took some pictures of me and Ad in her pretty dress this morning before we went. Good thing you did that - you have to be thankful for what you have. Anyways, you're the only one that can take the photos of us that show how we really are."

My next sob was caught and remade into something like a laugh. I tipped the rear view mirror to frame the sisters in their car seats. "And how is that, honey?"

"Cute and pretty and messy and loud and happy and proud."

I'm still holding on to Cate's floaty now that everyone is at school. Hers has more air in it than my own right now. I am thankful she is lending it to me. Now that I don't have to worry about drowning, I can concentrate on getting to higher ground again.

Maybe grandma would like bubble bath or new slippers this year.

Thursday, October 11, 2007

Daily Grind

I had one of those vivid, but mundane of dreams last night. You know the ones - a whole production of a dream merely to work through some simple task like washing your hands. Kind of a let down. But this was a little different - I was going through the paces of a day, the daily grind if you will, except for one slight twist - it was not my grind. It was someone else's. In my dream, I was fully aware of that, I knew that this pace, this to and fro, this collection of details, responsibilities, lists, obligations were someone else's burden. The day advanced, I got up and planned each next move based on the schedule this someone else - I'll call her Octavia - had to keep, the starring roles she had, the supporting roles she had, the errands to run, the job to do, etc.

In my dream I ventured I was yanked into Octavia's place so I could tell her about it, tell her how I felt going through her day, where everything was new to me, some things a breeze, some things more challenging. I was a day assessor, though I'm not certain it was Octavia herself that commissioned me. So I did her day and collected my data. But as soon as I was to debrief Octavia, I was jerked back to my own grind by the sound of my alarm.

I do not wake to music, that is too gentle, no matter the type of music. I need that electronic ee ee ee ee - something you want to scream back at. It's been a year and a half since I let go of the 'working mother' role, but I still need that moment just after the alarm rings to think "Is this a work day or a home day?" The answer to that question is no longer as simple as saying "work day."

While I do not leave for work, there is no such thing as a home day anymore. The schedule of readying and carting and assessing and deciding and collaborating and teaching and playing and pleading and thanking...on behalf my 2 daughters sometimes feels more rigorous than what I used to call a work day. We've got 3 different schools, therapies, doctors, swim classes, Girl Scouts, play rehearsals, IEP meetings, play dates, homework - pretty standard stuff, but a lot of it. I know, we're all up for patronizing the "stay at home mom" with pat phrases like "the hardest job ever" ala Oprah. I'm not sure the 'degree of difficulty meter' ratchets up or down depending on whether you work or not, but then I would not use the word "job" to characterize parenting, either. An aside for another time...

My older daughter Cate is hyper-verbal. I think I just made that word up. She is like me, in that if she thinks it, she must package it into words and give it away. I type mine, she says hers. But my younger daughter Addie, is non-verbal. Which is a big misnomer - she is as loud as the other one, but rather it is the shortcoming of the rest of us "talkers" that we do not always understand her language (or the language of many kids labeled with communication disorders). This combination of the hyper- and the so-called non-verbal in one household makes mornings, afternoons, evenings a constant pivot from one to the other, from pushing words back in to trying to pull them out: Cate, ssh! Just STOP talking for 2 minutes and try to listen! Addie, tell me what you want! Just pick - cheerios or a waffle. Here, I'll do this dance for a minute while balancing on one foot with a waffle in one hand and cheerios in the other, then will you tell me??

Today as we were in the car after the wake up/get ready morning rush, taking one kid in one direction to school and then doubling back to retrace my tracks and make more, to take the other to school, I had a lucid moment where I was able to ignore Cate's monologue about what happened on Hannah Montana last night, as well as tune out Addie's whines - whines that make it clear that I am falling short in my service to her in some specific way, but which leaves the urgent specific way pretty wide open to my own hunches. In this delusional 'silence', my dream came back to me and I tried to continue it consciously. What would I have told Octavia about her day?

I found the freedom in her life, even amidst a schedule, exhilarating. I didn't like what she had for lunch, but I did like that she got to eat it at her desk at work, in solitude, surfing the net and then chatting with co-workers. The meetings she attended may have been boring, but there were ideas there! New ideas and grown up talk. And when she got home at night, she had whatever she wanted for dinner, and peacefully read nearly half a novel before lights out. Lucky duck, I thought. Assessment summary: you don't know what you have, Octavia. Relish it.

How would Octavia write up the grind assessment for me? She might not have made it through the whole day, perhaps she'd have run screaming from my messy barbie- and therapy toy- laden noisy home back to her orderly silent apartment.

Or maybe not. Maybe she'd have told me that she liked the 'music' in my house. The sound of Cate singing her homemade operas about butterflies and flowers and the mad love she has for her little sister, the sound of Addie hollering "dah dah dah dah!" Octavia would probably notice that Addie's dah dah dah's came just as Cate's song ended. She might have interpreted it as "Thank you, Cate. I love you, too."

It's possible her report would include a reminder that I get to run on the playground with my 3rd grader and her friends after dropping Addie off at one of her 2 schools - both of which she loves. Playing shadow tag or pretending I'm an AWOL cow that the cowgirls must wrangle is something that not every so-close-to-40-it's-time-to-listen-for-surprise-party-clues-year old woman has the chance to fit in the morning, just before meeting someone for coffee to discuss becoming a parent resource for district special education families, Octavia may have chided.

She would have sat in my place at the dinner table and not even have attempted to direct orderly conversation about what happened in each person's day. She definitely would not have used the time to unload the day's disappointments on her exceedingly patient, just- arrived-home-from-a-long-commute-then-made-dinner husband. She would have just listened to see what came out of each mouth while marveling at Addie's signs and innovative invitations to play the "copy me" game.

Octavia would likely have included a few questions on my report: Do I realize how closely my kids watch me? Do I realize that as different as they seem, they are not only very much alike, but they are also like me? She would tell me that there are parts of my day when I seem to realize that I have more than my fair share of love and contentment and that the darker parts of that day are when I am not focused on the present, but worried about what comes next. Since Octavia is pretty smart, she would grant me that there are times when it is absolutely necessary to prepare for what comes next. But that would be closely followed by advice that I budget a price for it - it never comes without cost. Sometimes I pay too much for a little preparedness - I miss what Cate is telling me because I am trying to paddle against the stream of words instead of with them. I miss what Addie is telling me because I am wringing her for words or signs while she is nudging me to the door. Addie is telling me it's time to go to school, Mom.

You took the words right out of my mouth, darlin'.

Ray LaMontagne has a sort of whisper of a song, ethereal, but clean - called "Be Here Now." It quietly directs the listener's subconscious to push some realization into its consciousness that "it's only time, it will go by." Next and now are the same, just in different places on an imaginary continuum.

Octavia's assessment summary for my grind: The best way for Ms. H-E to prepare for what's next is by diverting some attention from it in favor of now.

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.