Thursday, January 29, 2009


I have to depart from my usual fodder here to share with you all news I got today via email. After 3 years with the Peace Corps in Kyrgyzstan, my younger brother (in his later 30's) now teaches in Kabul at a university - AUCA. Yes, Afganistan. He is not associated with the military in any way. The Karen he refers to at the end is another of our siblings who is a Probation and Parole officer in a rough part of town, but who is really, as my brother alludes to, a scholar and an artist with a day job.

(You will also see that verbosity is a family trait)

J here. I thought I'd squeak a quick one out to you all while I can, before Sunday when the semester begins and I'll be very busy.

K [Kunduz, his Kyrgyz love of a few years] and I spent the last month in Kyrgyzstan. I am back in Kabul with only having to pay a $100.00 bribe to get out of the airport in Bishkek, whereas Kunduz is now midway, Dushanbe Tajikistan. Her Almaty-Kabul flight was cancelled. Her A-stan visa is out on Feb 4th, so if there are any delays (and in CA, there often are)... we got another problem. Travelling in CA is, I imagine, like traveling in the US in the '30's- sometimes things go fine. Usually, they don't.

For my ol' K-stan palz... never fear, the country rolls on 'business as usual' which is to say, spiralling downward. One of our new profs here, a political scientist, taught at AUCA in Bishkek for two years and says 'Kyrgyzstan is a failed state.' Rising prices, increasing corruption, a government increasingly willing to throw its weight around- which only works if you got weight- and they don't- which leads to anger on the part of the people AND an increasing awareness that 'something CAN be done.' I myself smell revolution.

Speaking of revolutions- I'm married now. Kunduz and I had a nika, a small Muslim 'ceremony,' if you could call it that. A moldo came, ate plov with the family, and I donned a chappan (robe) and kalpak (Kyrgyz hat), and Kunduz a jooluk- white headscarf. The moldo called for salt and water, asked Kunduz if she'd back me up, she said she would, and asked me if I would take her. 'Aldym,' I said. 'I'll take (her).' I sipped the water and passed it on to my new wife. That was it.

Only her parents, one ejay, elder sister, one neice, and Emil and Edil, her- OUR sons, were there. But it's enough. Can you beat that, family? You never though I would get married, and now, I have the oldest son of us all- Edil is 20- and already has his eye on a bride. I may be the first grandparent of all of us!

Actually, the Kyrgyz practice 'ala-katchoo-' which isn't sneezing, it's better- BRIDE KIDNAPPING! I wanted to do that, and Edil and Emil said they would help... but it didn't work out- we really didn't have time. No, Kunduz is not pregnant- my visa for Kyrgyzstan was only one month long- as it was, I left one day late- hence the $100.00 bribe.(I guess on that count- I WAS in the wrong, technically illegal, so it's not really a bribe. See- corruption can work in one's favor sometimes.... Besides, I knew that if I was in trouble, I would be able to buy my way out- and when I saw the 'boss' at the counter- the robust figure and sallow cheeks of a Renaissance pope- I knew that I would be able to pay my way out- the only question being 'how much?')Anyway, coming back, I stayed in Dubai for a few days.

Dubai is like Vegas without the sleaze. That means that it as no soul. The economic crisis has really hit- work on the Burj, the 167 (?) floor tower- tallest in the world- has stopped. Young and spoiled emirate teens with bank accounts on five continents are forced to park their Hummers and drive economy-sized limousines and airplanes shorn of their wings. It was refreshing to fly into Kabul and see... real things. Old men with faces cragged like mountains selling screwdrivers in the street. Junked out cars and houses. Everything new already looks ten years old.

Better still was the reception I got from our folks at the U[niversity]. Drivers, janitors, guards, all the real, common folk, the guys that want to trade pakols (Afghan hats) with me... big hugs and kisses and a genuine outpouring of happiness that I had returned. I guess they've seen lots of kharaji (foreigners) leave 'on vacation' and never come back. But also, K and I have done everything we could to address the local staff on local terms, which is pretty uncommon for the whiteys here.

I'll be teaching Intro to Humanities again, and in Dubai I picked up Sir Kenneth Clark's 'Civilisation' series on DVD. Karen, you know what I'm talking about. One of my earliest memories is that book on your shelf when you lived in the basement- along with your wire statue of a Roman centurion, complete with pleated leather skirt, your impressionistic rendering of David's 'Napoleon Crossing the Saint Bernard Pass,' and- best of all- those black bound with gold trim paperbacks- TARZAN, all 22 of them. Now THAT's civilization. You're a person of rare cultural refinement, as out of place among the parolees and thugs as a street person in Dubai, an honest Kyrgyz, or an Afghan with restraint. That's the news from Kabul. January 29th, 2009.

Though he says we never thought he'd get married, he is the one who vowed not to ever since he was but a whippersnapper. Married! I have a new sister-in-law and 2 nephews! Cate and Addie have more cousins.

This truly falls under the "Other Joy" portion of this blog's title.

Monday, January 26, 2009

Beautiful Fighter

Sweet Bella Guerra, Addie's RTS "sister," commended her spirit to forces outside of this world yesterday. Bella was to turn 2 on February 16th.

If you pray, pray for her family, her mother Monica, who has had such a trying time these last few years. If you are not the praying kind, just be grateful today - in Bella's name, make the most of it.

Her first name means beautiful, her surname, I believe, is a derivative of fight. She and her mother are indeed, beautiful fighters.

To see photos of this little princess and hear more about this beautiful girl, please visit the blog "Our Journey." The Hudson family (whose son Frankie is Addie's RTS brother) have seen Bella's family through these last few weeks and exemplify what real friendship means.

Our Journey

Hug your sons and daughters today. As you do, lean in to listen to the pattern of their exhale and inhale. Match your own breathing to theirs, just because you can. And then thank whomever/whatever you believe is responsible.

Thursday, January 22, 2009

Still Grateful for her Gift

Another day of enjoying her flowers, though with decidedly less regard for their delicacy.

She took a whack at "he loves me/he loves me not," a few times. Remarkably, he loved her every time. A girl certain of her place in the world, she took all petals off with the one yank, in full command of 'his' affections.

Tuesday, January 20, 2009

Dear Dad,

I know we haven't talked in a while, due in no small part to the fact that you died of pancreatic cancer in 1978. That's still a drag, you know.

I am thinking of you today, wishing you were here for the history being made, wondering what you'd think of it. Since I was just 10 years old the last time I saw you, I don't have a real feel for your views on race, politics, justice, America's place in the world, etc. Even if I asked those that had more time with you: mom, the oldest of your 10 children - blamelessly, they'd probably attribute to you the most noble and current of views. There is no way to know whether you'd actually hold those views if you'd lived another 31 years to see today.

You know me, I am no politico by any means. But today Barack Obama was sworn in as the 44th president - young (about your age when you died), a parent of 2 young girls, the first African American to take the ultimate oath. It means a lot of things to a lot of people. Many worry that expectations are too high, that anyone would have a long row to hoe with all the complications and trouble the country faces right now, much less this man with the experience he's had.

But dad. I feel hopeful. I see people giving things a chance, giving each other a chance. No, it won't change everything, but it's a start. It's an opening, at least.

You're aware of our family's need to seek as many openings as we can, touched as we are by disability, a minority itself. It's all about the hunt - for education, affordable medical care, acceptance, opportunities, faith in abilities, appropriate expectations, etc. Not all parents of kids with disabilities have the time, resources, strength to identify and muscle through these often narrow openings. I feel like hunting grounds have been reset today, like there are more clearings, opportunities in plain site, that may one day be easily accessed by everyone and not just the experienced, connected hunters.

This shift may not be obvious or tangible, maybe only in the attitudes, only in people's willingness to mark the door that opened today by recognizing where else they themselves may hold one open.

Maybe you'd be the kind of dad to caution me against such an emotional response to what should be an objective matter and one that hasn't even proven itself out yet. I hope you know that I'm the kind of daughter, though, that gave up trying to tamp down such from the gut reactions to things a few years back. Filtering my default responses has never led to anything grand.

Pop, I'm not saying that one that one day there will be a person with a developmental disability taking office. But I'm saying the attitude that makes the thought of it a hilarious joke to some may start to erode a little.

I will do may part for Addie and for whomever comes after her. Maybe there will be a day when we don't have to pound so hard on doors to get them unlocked.

Anyway, I love you. Just wanted to tell you what today means to me. Cate says for you and Grandpa Dick to keep taking good care of our babies.

Missing both what I remember of you and what I imagine of you,

P.S. Attached are some photos from just a few minutes ago. I bought Addie some flowers to cheer her up - another cold - and to celebrate the day. I have never known, and doubt I will ever meet, another person who so absolutely appreciates and makes the most of a simple bundle of fresh flowers. Pardon the sun glare, she loves this spot on the kitchen floor where it's warm and she can easily see her own reflection in the oven door.

Wednesday, January 14, 2009

Another Lesson about Just Who Is In Charge

Dramatization of today's IM to my husband:
Me: I have good news and bad news
Husband: What's up?
Me: Addie is both inclined to and able to put her own DVD on.
(explanation of how I came to discover this today here)
Husband: Um. Is it possible to fake a cognitive disability for 5+ years? Has she been hustling us all along?

We jokingly muse about this every now and then.

Just before my discovery, I left the room for as long as it takes to put a plate in the sink in a modest sized house. Not long. She was sitting at the dining room table when I left. Our living room and dining room are open to each other and are really one large room.

Upon my return, I saw Addie standing on her new Rody Max (which is a therapy peanut with legs and a head, made to look like a horse), which she had scooted up to our entertainment center. The TV and DVD player sit about 4.5 feet off the floor in it. She was in front of the DVD player and just as I realized that she had a DVD in her hand, the door to the player opened. She had apparently hit the correct buttons: power and then open, in the few seconds she had left after moving Rody across the room. She was planning to watch Sesame Street Karaoke.

Why is this good news? Because it is yet another new stepping stone to this increasing independence that we profess to want for Addie, that many parents of kids with different abilities want. We are lucky enough to get a pretty even arc of these things with Addie; there seems to always be something she accomplishes without warning, without our seeing her try or even understanding she was motivated to do it.

Why is this bad news? I'll admit it. Because it is inconvenient for me. If Addie can change her own DVD, she will want to do it every time. She will want to change in the middle of a DVD, just because she can. She will remove her sister's in-progress movie in favor of her own. She will be precariously balancing on whatever piece of movable solid matter I carelessly leave in the room each time the whim to change the DVD hits her. She will then teach herself to open the cabinet where we keep the DVDs. She will proceed to figure out how to open DVD cases. She will discover that we "hide" her favorites on top of the speakers, about 6 feet from the floor, and figure out a way to get up there.

Once she is this vested in what is viewed at home, she will learn how to browse the DVD shelves at the library and not just settle for my choices. She will branch out and try different things, instead of sticking with the tried and true that she prefers now. Once she can pick her own DVDs at the library, she's going to want to check her own out. She'll find a way to reach up to the check out desk and hand them my card. Then she'll want her own card. When she has her own card, she'll think about how she can check out books. So we'll be at the library longer each time. She'll peruse the books and make choices based on her own interests.

I'll read the books to her, but she'll want to look at them on her own. She'll look at the letters and recognize some. She'll decide to try and sound them out in her head (since that's the only place she can do it), and then she'll be reading. Once she can read, she'll be free to do/see/experience more at home and at school. She'll make more and more friends than she already has. She'll graduate. She'll find work that means something to her.

She'll move out. And we'll miss her.

And so. Good news and bad news.

Sometimes it is easier or more peaceful to think that there are some things that are not possible for Addie. But since that thought has never crossed her own mind and likely never will, we follow her lead.

Yahoo! Addie can work the DVD player.

***Addie's cool custom "I love Mrs. Miller's Goldfish" shirt by Randi Sargent at Giving Greetings/Say it with Symbols***

Tuesday, January 13, 2009

Let this declaration not become a jinx

I'm gonna need you to knock on wood and/or cross your fingers before reading further. I'm serious. Please just do it for me. If your coworker or wife or child ask you what you're doing, just tell them you are doing your part to restore sanity at a little house in Southeastern WI.

Sleep seems to be making a slow comeback. Not during the day, but at night, when the majority of humans sleep. Did you knock or cross? Please.

Last night and the night before there was only one rocking session each that I can recall. Both short and easily reset. Adaptive swim class last evening helped no doubt, as the temperature here (-2 right now, with the promise of drastic decline the whole week) might also be encouraging hibernation.

Whatever it is, we'll take it. Wish us - no, will us - continuation.

Wednesday, January 7, 2009

Sleep is Overrated

I explained the lull one way in November. I explain it another way now. My PC is croaking a very drawn out death of natural causes - age combined with obesity. I cannot make myself delete photos or videos with my sweet girls in them. OK, even my attempts at being arty remain - the flower petals, grains of sand, tomatoes from our garden. All there, bloating my hard drive, compromising "circulation."

So an external hard drive and a more agile laptop are on their way, which I hope will mean a return to frequency here.

In the meantime, sleep is again/still elusive here. Winter break shook things up and just when they started to settle, it was time for alarms and morning routines again. As absolutely beside herself Addie was to get back to her beloved school, she's sleeping less than when the semester ended.

Addie continues to wake up frequently during the night and very vigorously rock in her bed. Cate is the only one that sleeps through it and lately even she has been disturbed.

To add to that, these last few days when we thought she'd be exhausted after restarting school, therapy and swim, she has utterly forsaken her nap. Rocks, plays, jabbers in her bed - anything but sleep. I know, I know. With a typical kid, you'd say she'd outgrown her nap. But since there is precious little sleep at night, this is not the case for her. After a napless Monday afternoon, she fell asleep 20 minutes before we needed to head to adaptive swim class. And today, after getting all her outer gear on as she was waiting for the go ahead to line up, she zonked at school for the first time. Just passed out on her proprietary purple carpet square.

She stayed asleep in her aide's arms while I ran her backpack and communication device to the car and moved the car closer to prepare for the carrying of nearly 40lbs of snoring dead weight over snow covered ice. She continued to saw logs of notable diameter until I put her in her car seat. With how big/long she has become, along with the layer of ice that has covered our suburb for a week, I have to sort of toss her into her seat to ensure her legs are not tangled with mine and that I don't take too much weight into my back and topple. That woke her up. She was absolutely thrilled to be in her K4 room one minute and in her own spot in the car the next, seemingly.

We followed our after school routine: she played in the backyard for a bit (read: ate all the snow she possibly could) while I made her lunch. She came in, ate and then watched Jack's Big Music Show to wind down before a sleep.

Through lunch, I debated whether to just skip nap, but my fear is the involuntary pass out around dinner time and how that might have a ripple affect at night. The girl needs sleep to function and she's just not getting it. So I decided to give it a whirl. If nothing else, I could get a few things done.

Addie now sleeps in a toddler bed with a removable rail on one side, the wall on the other. She has taken the liberty of removing the rail herself a few times (found her downstairs at 3am one night), but we have since rigged different ways of preventing that. Still, she'll sit crosswise on her bed, specific blanket wrapped over head and shoulders, and rock with her back against the rail. Upon impact the rail gives a bit with a thud and then audibly snaps back once she's on the forward part of the rock. There is no mistaking the sound or her particular rapid fire.

Often I go up, remove the blanket, lay her back down and cover her up; "reset" her, if you will. This usually makes no difference at all, as leaving her to continue rarely leads to saturation with it - she could go for hours. We have tried the gamut of strategies, but the girl has a will of her own. If she wants to do it, she will indeed do it, our interruptions never affecting her patience or concentration.

After laying her down and singing/signing our song this afternoon, I busied myself with details that are tricky to focus on when she is near. My plan was to give her (really give ME) 45 minutes up there and hope she'd fall asleep within enough time to nab some productive z's before I have to wake her to go get her sister from school. Within 6 minutes of kissing her cheek and coming downstairs, it started.

This sound of her rocking is a very familiar, very frustrating sound to us all. It initiates irritation and worry at once. It tells us that she is not sleeping and neither will we (at night). It drives us to forecast the 24 hour implications: will Addie make it through the day, will she nap tomorrow, will she be able to participate at school, will this undercut her immune system and her awareness, what will it do to her already compromised motor planning, sensory processing and balance...then, will I get enough sleep, will my nerves be shot to the point of childlike crankiness?

In short, it is not a happy sound.

Today, I heard it a different way.

THUMP-thump. THUMP-thump. THUMP-thump. THUMP-thump.

The second I tuned in, I did not sigh with exasperation as is my reflex. Instead, I was abruptly sent back to 2 separate moments in time, one before Addie was born and one after. Different days that centered around the same rhythm I was hearing from upstairs. Daydreams, hope and promise culminated in the moments anticipating this cadence back then. Despair and cold, bitter loss followed the silence that filled the gap in place of the pattern of sound I expected. These slippery pits of silence took place in my ob-gyn's office. I remember looking up to the doctor's honed and professional look of sympathy as the fruitless stethoscope dangled, an expression that also asked a question: is that enough for you, or do I need to put official words to what you probably already know. This baby did not make it. There is nothing for you to hear.

Holding a wet, soapy dish in my hand today as I listened, I let this brief brush with heartache move out of the way quickly. Those recalled life or death moments were just utilitarian this time, not to be dwelt upon. They had to be called up to lend context to the message I was meant to get. For a girl that cannot speak, Addie is incessantly talking to me. Her wordless message this time:

I am here, mom. I did make it. You hear me? Hear this heart beat? Bear witness to me, mom, to my vibrancy, to my verve. I am with you.

I am.

Nap is cancelled until further notice. In that time slot shall be dance parties, finger painting, snow feasts, sing/sign alongs, lounging, living. Listening to our hearts beat.