Friday, February 27, 2009

Have Fun. Do your Best.

Goals: have fun, do her best. That and a little faith in herself got Jenna Montgomery an Olympic gold medal, a double order of mozzarella sticks...and possibly a young suitor.

Jenna has Rubinstein-Taybi Syndrome like Addie and her pals do.

Check her story out below by clicking on 'no limits'... hang on to it so you can compare it to the stories that come out in a few years about Addie's swimming medals and other amazing feats.

No Limits

(Thanks for stopping by and helping me reach the 10,000 hits milestone. I appreciate the time and good thoughts required to come back to this log of inconsistent frequency. Cheers to you.)

Thursday, February 12, 2009

So Much Ta Do

Addie's life has it's own momentum. She's a big girl who will turn 6 this summer, no longer always at the mercy of someone else's schedule. No longer is her calendar anchored only by therapies and medical appointments.

Girl got stuff to do.

She's got to goof around outside...

...stake a claim in her sister's new desk...

...go to an orchestra concert for kids (while using her communication device to tell me that the playground would be more fun)...

...line up for swim class... some cool new shades...

...chillax with sistah... mail from her peeps...

...and rock the classroom as Calendar Helper (video too huge to post - fuzzy still here)!

"Addie, you want to come see what I put up on the blog about you?"

"Not now, mom. I got stuff ta do!"

Monday, February 9, 2009

Wind and Dry Ground: a long short story

Winter is increasingly unbearable in Wisconsin. Or I am increasingly intolerant of it. This past weekend, though, we enjoyed an unseasonably sunny and mild few days. We all look up on these days, literally - up through the leafless branches to the denim sky, the white sun. Looking down serves up only dirty melting snow, Halloween candy wrappers revealed, rusty autumn colored puddles.

You must look up and be selective.

On Saturday I took myself for a 4 mile walk outside. The winds were uproarious, but warm. I'd have preferred to wear my gym shoes, but those rusty puddles can reach three or four inches deep. Salt stained winter boots it had to be. Still, it was exhilarating. People were out, smiling, waving, looking up, ignoring the probable streams forming in their basements, the inevitable mud tracked inside, the treacherous ice rink the sidewalk would turn into during the overnight re-freeze. Ignoring the fact that there is surely more winter to come before warm winds settle in the Midwest.

In the midst of my strolling and looking up, my gaze dropped down. I cannot say why I looked down, but I did. I blinked and blinked again. In my peripheral vision, I saw garbage, lots of garbage. But one bit beckoned. Compelled to focus on this particular tattered trash, I bent down.

It was a fifty dollar bill.

Not a buck, not five. Not monopoly money. A true, but worn and wet cool $50. My head pivoted from side to side, looking up again, but not too far up. Nobody. I stood for a minute. This was on the sidewalk near a corner, not connected to personal property. It was on a main thoroughfare in our little suburb. Close to the village hall, the library and a mom and pop variety store that draws all manner of purchasers any given weekend.

What do I do?

I picked it up. It was quite torn on one corner, a few holes poked in it. Almost looked like a dog had spent a little time trying to turn it into a chew toy to no avail. I shook it, heavy with water, but it was still sodden. I stood there for a good four or five minutes, looking up and down the street. Its frantic rightful owner might come to claim it any minute, I must have convinced myself.

Nobody. What do I do?

The police station is adjacent to the village hall. Maybe it's not the first thing that should have occurred to me. Or the second or third. But it's all that occurred to me. It was either that, or stand in the same spot for however many days it took.

I walked kitty corner - or catty corner, depending on your region - and entered the police station. The receptionist received my story as though I were the soggy tattered bill itself standing before her blathering. Her incredulous look was my first and really only inkling that bringing a found, unattached bushel of cash to the police station was maybe only one of many courses of action available.

An officer came from outside the bullet proof glass (yes, bullet proof. In my suburb, which is really a village, where if you call the police because someone has parked you in to your driveway, they arrive before you hang up the phone and knock on every single door in a two block radius in the most earnest attempt to find the "perpetrator." True story - happened to us. Not much police business around here) and took the water-logged bill from me.

"Yeah. It's real enough."

"Give me your name, address, date of birth," he says as he does that officer-ly flip of the small black ring binder notebook. What did I do?

"I'll put your name with it in case nobody comes to claim it."

Ok. Maybe it was not that clever a plan. Who's gonna have a big bill fly from their wallet on the windiest day of the year and end up at this little police station expecting to find it. But again, what could I do?

I walked out, expecting to feel free of the burden of figuring out what to do with the actual limp cash itself. But that freedom just gave way to obsessing about how the money came to rest in my path to begin with. As I indulged the course of these thoughts, I got more and more upset. Outwardly. I felt the heat of pooled tears and that mild twisting of facial muscles. Money is becoming too important these days, to everyone.

An older woman, walking back from picking up a birthday card for her grandson at Winkies. Her curved back curves even more as she checks her wallet every few feet to make sure the rest of her money is still in there. The wind reaches around her hunched shoulders and snatches her biggest bill out as she glances around her. She thinks she maybe left it at Winkies and goes back. She goes back to the grocery store. No one has seen it. She cries because now there can be no present to go with the card. She cries because she feels bits of control slipping away from her every day.

A quiet boy finally unfolds the 50$ bill he got for his first communion a few years ago. He's planned and planned, thought and rethought what he'd spend it on these years. His family teases him for sitting on it, but he wants to deliberate all the way until he reaches the single correct thing to spend it on. In a bold move to prove that he can and will spend it, he takes it out. Secretly, he plans only to keep it in his pocket while looking at items in the stores on the main street, thinking the proximity of the money will inspire him to come to a decision. As he removes his hand from his pocket to zip his sweatshirt up, the bill slips out and is then carried blocks away by a quick gust. He doesn't know it's gone until he gets home. Now he has to tell his family that he did not spend it, he lost it.

A pony-tailed mom pushes the double stroller, toddler on the right, infant on the left. She cradles a cell phone between shoulder and ear, plugging the other ear with her finger to drown out the chatter and babbling from within the stroller. This is the call she'd been waiting for, the results from the genetic testing on her baby. She stops short when she hears the name of the syndrome, her diaper bag falls off the back of the stroller and her wallet tumbles out. She curses and stuffs it all back in while the clinician keeps talking, all but the wad of bills that blows away undetected. Money that will be needed for this child's life in therapies, medical intervention and special education.

Vignettes like these come in quick succession. I can't hold in the vicarious (and wholly imaginary) despair any more. I think about how the gusts of wind are eastbound, how this money could have come from further west, within the city, where money is less evenly distributed, where lack of it tends to inspire acts of desperation, if the evening news is to be believed. Why would it blow east to this lakeside suburb where we all have enough, mostly. Where if we don't have enough, we have strong and many-tiered support systems to rely on. What frantic hands might it have slipped from there? What does its disappearance mean to that person, to his or her family and future?

I cannot stop it. I am walking having given up trying to choke anything back. I can do nothing about it. I cannot control it. I cannot put this money back where it came from, cover the divot. For my own sake, I cannot catch and keep lighter thoughts - a wealthy citizen tossed it out the window in an act of good will, or that it's a bill that's been around the country as some sort of social experiment. There is no traction in my mind for these flights of fancy, just the dire ones.

By now I have reached my halfway point and am headed back down a slight hill on a residential street. People pass by often, glancing with the beginning of a smile on their faces and then looking away when they see my expression. That is easier to do as they see I have ipod ear buds in. They do not know that I turned the music off when I spotted the sodden cash early on.

I turn my face up to that white sun trying to burn off these noxious imaginings. Why is this weighing what it does now? I distracted myself for a bit measuring out whether or not I'd lost my marbles.

As that determination was being made, I looked down for a second time. This time I saw something that called even louder than the cursed money. It was the first completely dry and clear patch of pavement I've seen since before the first snowfall. It was dry and wide, almost glaring in comparison to the wet concrete, mud and ashen old snow. The sun had direct and intense access to this patch on the decline under bare trees.

Before I could think better of it - or even think about it at all, I was crouched down in the middle of this sun-dried concrete. First I breathed it in. It smelled of minerals and warm dirt. I brushed a small patch clear of any road salt or gravel. I lay my cheek to it. Solid, warm, flat, but not smooth. Consistent, constant. Promise. Control. Clearing.

Eyes closed, cheek to the pavement, I was still for a few seconds. Maybe a minute.

I stood. I walked home at a brisk pace in time to the music I'd turned back on: Fatboy Slim.

A few hours later I told my husband about finding the money. I told it to him in a sort of joking/scoffing tone. Just the facts. We both laughed later when my daughter Cate found one dollar just across the street from where I discovered my boon. We didn't think twice about letting her keep it.

After I picked her up from school today I told Addie about it. All of it. I told her that I think what her therapists might call sensory processing disorder probably helps her sometimes, that now I get it. That when things are too wild, too far beyond control, sometimes you just have to feel or smell (or taste or roll or look at upside down or rock against...)something constant and solid to feel anchored. I told her that it works. Once again she slipped a wordless and effective strategy to me when I needed it.