Sixes and Sevens

I had the lovely opportunity to meet one of my computer friends in real life on Friday.  There was an excessive amount of kid-chasing but at one point we were able to sit & chat as our extra-special kids played in the water.  And they didn't just splash - they rolled around and reveled in it.  Despite my failure to bring of change of clothes, I shrugged - carpe diem, said my friend.  Other kids, who'd only been dipping their toes in, followed suit - a fine example of peer modeling.  And at one point I elbowed my friend and nodded at the very pregnant woman nearby.  I don't remember what I said but we giggled a bit at what she could be thinking.  Was this to be an omen?  A harbinger of tears?  Or were our two laughing, splashing kids reassurance that it would all be ok, no matter what? 

What did the other pregnant woman think, later that day, as she navigated around my daughter wailing on the steps, despondent at having to leave? 

That night Matt and I went to a funeral parlor to say goodbye to a 6 week old baby I never had the chance to meet, a cousin of Matt's.  Theirs is not my story to tell but he had AML, a type of leukemia typically only found in children with Down syndrome.  Tests confirmed he didn't have it, but this tiny fact made me perversely feel like part of the story. 

My heart is broken for the family.  The empty nursery, the silent birthdays, the thousand shattering reminders to come must stretch in front of them like space itself.  And their loss has wrenched open an old wound of mine too, one that I thought had healed, so I stood in line to pay my respects with arms crossed and jaw clenched, trying to keep it together.  I'm sure I looked angry.  I think I was. In what twisted, dystopian world is this how it ends?

In order to distract myself I counted light fixtures and pregnant women.  There were a lot.  Of both.  And, god help me, but I could not help but wonder as I stood there how many of the pretty, weeping pregnant girls had taken that "new blood test" and how many of them weren't pregnant any longer because they had. I wondered - probably unfairly, because I'm sure all their friends are lovely people (though even fuzzy statistics back me up) - if they made a distinction between our cousin's loss and the end game of that test. 

An Australian couple recently used a surrogate in Thailand and conceived twins.  When it was revealed one had Down syndrome, they reportedly asked the surrogate to abort.  She refused.  After the babies were born, they took the "typical" one back to Australia and left the one with Ds behind.  There've been no reports that they formally put the baby up for adoption.  There was no medical fund.  They just left.  This story only has a not-horrifically-tragic end because the surrogate mom continued to care for him as her own, took him to a hospital, and the story got out.  A trust fund has been set up for the baby.  However the story could have easily ended with a too-tight blanket over the face or a dearth of bottles, and no one would have been the wiser.  No one would have cared.

The contrast between our cousin's standing room only funeral and the baby left behind left has gnawed at me all week.  It's not just the difference between 46 and 47 chromosomes, of course...  except it was.        

The Girl's birthday party was scheduled for Saturday but we pushed it because of the funeral mass. She just turned 6.  She'll get cake and balloons later, but in the meantime there was the annual, ceremonial reading of Dr. Seuss's Happy Birthday To You.

If we didn't have birthdays, you wouldn't be you.
If you'd never been born, well then what would you do?...
Or worse than all that... Why, you might be a WASN'T.
A Wasn't has no fun at all.  No, he doesn't.
A Wasn't just isn't.  He just isn't present.
But you...You ARE YOU!  And, now isn't that pleasant!

I tear up, every time.  Because, may God forgive me, but if I hadn't lost Brennan and if The Girl had been diagnosed sooner and if I hadn't felt her kicking, it might have been a possibility.  And I cannot fathom what grotesque fuckery would have made that OK in my head.  I cannot explain the apparent hypocrisy between then and my unforgiving judgment of worried future moms now, beyond the fact that I have now spent 6 years with this child and my world is brighter because of her.  I simply do not recall what my concerns were.  I wish I could convey to those moms how very fragile life is and how much joy can be sucked out of even an unconventional one.  How little those numbers matter.  How they should grab on to what they have because it might not last.  To carpe diem.  

31 for 21: Part 1 of 2. Or 3, you never know.

Back in May I wrote this:  There's obviously no easily framed picture of disability.  Everyone draws their own lines of what is and isn't acceptable, of what is and isn't compatible with life.  Decent people don't try to inflict their lines on others and I suspect most find the line to be a mirage anyway - if they get up close it dances off again.  You adjust, adapt, and find joy where you can.

I'm still struggling with this idea.  I don't think there IS an answer, beyond what I wrote, but humans like to categorize - good/bad, worthwhile/not.  The lucky, or possibly the very unlucky, have tripped and eaten sand but are granted the wisdom of knowing it's all bullshit.  Assholes, meanwhile, squint and pretend they can see the line in the sand from their boats anchored off shore.  

A few haikus ago I mentioned how grumpy Million Dollar Baby left me.  Because I am an asshole, I will tell you why:  I get the premise of the movie, I do - live large & go out without compromising - but I cannot countenance walking away from the one and only opportunity you will ever have to exist, to find joy, in whatever form that may come.  Yes, she'd found it once, it was stolen and that was sad, but was she really so incapable of finding any elsewhere?  Ever again?  No movies, books, songs, or sunrises?  No lemon pie with Clint Eastwood?  Her coach's reaction was worse - Clint considered her request to be put down like a dog and, eyeballing her situation, agreed it was a life was best ended. 

In that same post I mentioned the Van Ingraham story*.  What I did not cover was that the central figure of the story put a DNR on his brother.  He said, "[Van] spent half his time jumping and spinning and dancing around the hallways...his whole life was about movement... I could see it in his eyes, he was scared to death, he couldn't understand why he couldn't move his arms and his legs."  I've been forced to wonder why the movie irritated me while this story left me in tears.  Both were new quadriplegics - the only difference was perhaps Van's cognition, but maybe just his verbal skills.  What nasty little biases are lurking in my heart?  
*I'd linked to the wrong story in my earlier post; the link with the DNR bit is here.  

Abortion is a hot topic in the Down syndrome community - it obviously is everywhere - but Down syndrome can be identified in utero and those discoveries often end in termination.  Simple fact.  I am pro choice but I'll admit I find the thought of parents eyeballing the little squirmy thing on the ultrasound screen and deciding their presumably otherwise wanted child, so like mine, is a life best ended is horrifying.  My attempt at tolerance for individual lines dies and I shriek at the nasty little biases in their hearts.  How can I not take that personally?  I'm not playing into a stereotype here, but THIS child sucks the marrow out of life and then dances on the bones.  There are temper tantrums, and IEPs, and sign language but everyone should be so lucky.  I don't know think any of this can be reconciled. Thoughts?

There will be ponies at 9.

Last year The Boy's 7th birthday party was cancelled because he came down with a pestilence of some kind.  Which was unfortunate because Aunt Mary was in town and had helped me make several gallons of sangria for the party - which we tragically were then forced to drink ourselves.  It was moved to the following week, conveniently when my mom was in town, but the sangria was gone by then and I have a very, very strict 2 sangria gallon/month maximum.

Different sangria party.  Different month. Still awesome.

Two-ish years ago my husband was at the St. Louis airport when it was hit by a tornado.  Which I can still only marvel at.

This year, in one of those great confluences of freak luck and damn statistics, my son's birthday party was disrupted, again,

by a tornado, again,
that hit the St. Louis airport, again,
while Matt was... ok, he wasn't there again,
but he was about to be, to pick up a friend, until he took a look at the radar and hunkered with us in the basement for a while.  He left later but ended up getting stuck on a bridge for 4 hours because the tornado damage, turns out, had shut down the freeway.  He doesn't like bridges and called me every 15 minutes to inform me the bridge hadn't collapsed yet.  That was fun.

The Boy has an almost-summer birthday and cheap, lazy parents so we have so far managed to avoid the Friend Party.  I've thrown his class a holiday cookie party the last few years, and there are always a bunch of cousins at the family party so I've managed to not feel too guilty, but he finally asked and he's almost too old for the traditional 2-hour pizza-cake-shoo schtick, so we broke down this year.  He had almost carte blanche and, delirious with the freedom of it all, took almost a month to settle on a couple of besties and Dave & Buster's.  Which, if you've been spared that particular joy, is a bigger, less grimy, mouse-free version of Chuck E. Cheese - though they have a liquor license, so it's almost awesome (Flashing strobe lights and beer!  What could go wrong?).  This was to be a Very Big Deal, as only something built up in an almost-8 year old's head for almost 2 months can be. 

(The family party was also a Very Big Deal, because of mommy's awesome, newly found crafting skills, but more on that later).

The tornado was last Friday night and the party was the following day - it took a while Saturday morning to confirm the place was indeed shut down and then we had to deal with a Very Sad Boy.  This was one of those delicate parenting moments - people's homes were pulverized while my baby was Very Sad over what amounted to a schedule change - but kids can't learn empathy for others without owning their own feelings so there were lots of hugs & cuddles.  In retrospect we probably should have done something more civic minded and Life Lesson-ish, like bring coffee & donuts to the emergency workers, but we would have just been in the way and, well, I didn't want to get stuck on a bridge for four hours either.  Maybe we should have brought donuts to our local FD?  Darn it!  Hindsight!

We ended up going out to lunch with some friends, hit the park, and had a couple of those handy cousins come over later so he survived... and the party was rescheduled.  But when he turns 9?  The universe better show up with ponies and unicorns and fireworks.  And mommy may show up with some donuts for the FD too.
   

No, he's not about to jump.

I still want to start watermarking before I put up better pix...

Ha! Right, I'll get on that any day now.

Two men shrieking.

While sitting in any number of random airports this weekend I made a list on my fancy new phone of the 37 posts I've brilliantly scripted in my head - but then I was distracted by my travels and so, before sharing anything worthwhile (ha!), I wish to inflict on you the same feelings of horror and annoyance I recently felt.  Misery loves company and, oh, was I ever in such miserably close company!

Flight#1, STL-PHX:  Late booking so not only do I not get a direct flight, I am forced into the window seat.  I am a wee bit claustrophobic and don't so much sleep on the right or left side of the bed, but rather whichever side is nearer the door.  I find the window seat.... unpleasant.  Made worse by the exceptionally intoxicated large man sitting next to me.  He stank so badly of beer I spent two hours breathing thru my shirt.  And lest anyone is unclear, this was not the warm-bread-rising goodness at your local micro-brew & pub.  This is 24 hour bender/hadn't showered/frat boy with dirty gym socks stank.

But, revealing a disconcerting level of vanity on my part, I noticed he only tried to flirt with the blond in the aisle seat and not me.  It clearly must have been because her ability to plan ahead to buy aisle seats proved she was gifted with superior survival skills, akin to taking down the biggest bison, and not because of her pretty, pretty blond hair.

I'm still surprised they let him on the plane.  He was stumbling so badly he didn't so much return to his seat after a trip to the loo, as fall into it.  Yet when I got up he crawled up onto his chair like a 300# circus clown perched on the back of an elephant.  I don't think it occurred to him it would've been easier to just step out.  He was also wearing gym shorts and had an, ummm, wide stance.  Gross.  The plane was full so there was nowhere else to go but he didn't puke on me so that was good.  Also good was actually getting the chance to say, "Oh, HELL NO" when he started falling onto my shoulder.  I don't get the chance to say that very often.

Also good?  I'd left my wallet in my bag overhead (important plot point!) & decided I didn't want a drink badly enough to climb over him to get it.  The blond goddess on the aisle?  5 minutes later she got up and returned with a lovely G&T to replace my soda.  Dousing myself in my own irony alcoholic fumes did help.

I didn't know people like that existed.  I wanted to give her a hug but I'm not really a huggy person and that would have entailed reaching over the BierMeister.  What do you do?  Hi! Here's my card!  You have single handedly redeemed the entire human race in my eyes!  Want to have lunch next week?  I settled for about 30 obsequious Thank Yous and sympathetically rolled my eyes when BeirMeister tried to lean on her shoulder.

Flight#2, PHX-LAX:  I am pathetically grateful for the empty middle seat but the young lady on the aisle was wearing 12" high hooker shoes which she immediately took off, curling her bare feet up on the seat between us, and then she started singing.  Out loud.  Later she swapped life stories with the three people on the other side of the aisle and she was in that painful period during your early 20s when you have a Philosophy and wish to Share your Great Insights on Life.  None of which would have bothered me too much, since she was considerate enough to respect the universal sign of I am holding a book up 3" from my nose because I do not wish to converse with you, but her pants barely covered her lady bits and certainly didn't cover her red lace thong and so I spent an hour wondering when & how I had become the conservative old biddy in that scene.  Also, she was clearly tweaking, couldn't sit still, and I was worried she might puke.

[Two intervening futile work meetings and fabulous, fattening visit with Gigi & Others, to be covered later so you don't get bored and wander off]

Flight#3, LAX-PHX:  No talking, tweaking, or tankards.  Completely uneventful till we land when, before taxiing to the gate, some guy right across from me jumps up to grab his bag from the overhead.  The flight attendant starts shrieking at him, like that mom in Walm@rt who is mid-crisis and you consider following her out of the store to get a license plate to call social services.  He takes the guy's bag away and petulantly says he putting it in the back of the plane so the guy will now be the last one off the plane.  That'll learn ya!  The guy might've been a twit but I'm pretty sure I don't want to be at that flight attendant's door in the event of an emergency deplaning.

Flight#4, PHX-STL:  The otherwise presumably very nice gentleman in the seat next to me does NOT respect the the universal sign of I am holding a book up 3" from my nose because I do not wish to converse and insists on TALKING to me -  Quelle horreur!

But this flight I plan ahead and pull my wallet out in case I want to buy a drink (important plot point!) since I am once again in the window seat and am not above self medication.  But it's 10:30-11pm and I doze off instead (only to later wake myself with my own snorfling sounds - I am soooo sexy).  After we land I get aallll the way down to the parking shuttles before I realize my wallet is still on the plane.  And my phone was dead too, because I'd only pulled half of the 37 separate charger pieces out of the plug at Gigi's and my fancy new phone's battery has the half life of a squished gnat.  No wallet, no parking stub, no parking payment options, no way home.  No way to call home.  Awesome!  I head back to security but it's now midnight and they're all locked up.   So I round the corner to talk to the security guard... and he PANICS.   No exaggeration, he jumps up, shrieks at me to stop, and HIS HAND IS ON HIS GUN.  It was still holstered but holy crap.  I am a middle aged women in heels and a grey suit pulling a roll-y suitcase. 

[Though in fairness, those corporate issued pens can be lethal.]

If it had not been midnight & if I weren't worried about how I was going to get home, I would have found it hysterical but there was also something a little disturbing about that hand on his gun.  No, I'm not going to extrapolate this into a commentary on The News, though it's tempting.  And maybe I honed in on that because of The News.  Let's just agree that putting panicky people in positions of authority is a lousy idea. 

Anyway, I eventually found someone unarmed, who found my plane & wallet over in the cleaning hanger & I made it home by 1:30am.  I'd been excited to fly solo - no wiping up cracker crumbs or retrieving sippy cups or diaper changes in the 2' wide airplane lavatory - but lesson learned.  I'll take flying with my snotty, poopy kids every time.  Though this trip obviously provided LOTS of material, so there's that.

Ennui

I don't think I've missed a whole week blogging in a while now.  I had something funny planned about being buried underneath the laundry pile and unable to call for help, but then Sunday rolled around and that suddenly seemed trite. 

Then I wrote a long overwrought post about the last 10 years and righteous albeit imperfectly executed wars and certain people rotting in hell but I didn't post because I just don't feel it was my story.  Matt & I both know people variously impacted but neither of us lost anyone directly on either 9/11 or in the two wars since so although a citizen of this country, entitled to my opinion, freedom of speech, blah, blah - we've been relatively insulated.  And when I say "overwrought" it was eye rollingly cringe worthy. 

But since I do excel at self-mocking, I will share that on the morning of Matt woke me up to watch the news and I remember my first reaction was to think they were making something out of nothing, assuming it was a little Cessna, lost in the fog, or maybe with a mechanical problem.  Man - when I am wrong, I am really really wrong.

My brother came to visit this weekend and we ran a 5k on Saturday and then accidentally ran 8-9 miles on Sunday.  Because I cannot read a map and have NO sense of distance.  No, I have not yet recovered.  I still don't have Easter photos.  We haven't received my girl's IEP yet and she apparently has croup.  My son announced he was going to have kids in 10 years... when he's 16.  We took the little dog into an abusive colorblind groomer.  All good stuff.  Huh.  Seems like a good night for Jon Stewart & a glass of wine. 

Royal Tannenbaums?

Girl on a Mission

Seriously Undignified.  And not even matching.

NOT a movie review.

Serendipitously, given Saturday's post, NPR did a bit last night about the "Black Swan" theory.  In effect, the "one off", the worst case scenario.  In a tiny way, this is sort of what I do (risk mngt/claims). What's our best day in court?  What's our worst?  We don't reserve for the one off, the runaway jury, but certain venues do have a higher "x-factor" (read:  likeliness of whackitude).  In Fight Club, Edward Norton investigated freak accidents, evaluated the risk of it happening again, the cost of settling those claims, and compared that number to the cost of recalling an entire fleet of cars.  This represented his life as Soulless Bureaucrat*.
    *It's also on my listed of recommended cinema for newbies.  Am I Edward, before the bruises & without Brad Pitt?  Horror!  

But that is how the world works. In the course of my career, one expert joked that it IS possible to design a perfectly safe car. But it would be so expensive no one could afford to drive it. No one would die in car crashes because everyone would be walking.  [They'd perish instead by slipping on the the ice, succumbing to heat stroke, or getting thrown off their horse.]

My sister, doctoral candidate extraordinaire, when prodded into commenting on recent events since earthquakes are her thing, said that buildings simply aren't made to withstand a 30' wall of water.  I suggested a guest post but she's busy contemplating dessert, oops, her dissertation, or some such.  I asked my brother to weigh in too since he's in (a different corner of) the same field.  The stronger you build a building, the further afield you go in designing for the multitude of potential one offs, the more expensive it gets (also,  apparently, the fewer windows).  Those are not abstract numbers.  Those are dollars coming out of the builder's bottom line which, in theory, limits Christmas bonuses, cost-of-living-adjustments, & employer contributions to health care.... Is there a sweet spot spot in the middle?  My brother made a case for building codes, professional certification, etc... e.g. government regulation (Something also applicable to Edward Norton's job, above.  Also something the grumpy people on the east coast might keep in mind as they rail against big brother.)

Speaking of abstract figures, I just saw the number of missing or (presumed?) dead in Japan is now 16,000.
Sixteen thousand people.
I cannot get my head around that number.  I know the numbers from the Indonesian tsunami were ~15 times that but those don't make any more or less sense. 

In the lead in to the NPR piece, Robert Siegel said that we all know [such things] can happen, "but we don't plan our daily lives around that possibility.  So how do we incorporate the possibility of events that could be as disastrous as they are unlikely?"

You don't. 

Right?  You just don't.  You LIVE your life. 

Maya's comment on Saturday was that despite (or because of?) the tough stuff, she's actually more optimistic now.  I don't think anyone would ever describe me as a ray of sunshine ...(sorry, break for hysterical laughter)... but I couldn't agree more.  I don't really do the unicorns & rainbows here but, because of the one offs - past and future - you appreciate the days that whatever gods may be give you and try to make the most of them. 

So you go and visit Gigi for a day.
[Lookit that smooooothhh transition!]

And you play with Daddy's hat while he's gone

Love, personified...and literally (the sign thereof!)

A single death

I realize it is poor form to quote a genocidal dictator, but I'm going to go out on a limb in public on the interwebs and admit there is a teensy bit of truth in this:  A single death is a tragedy, a million deaths is a statistic.  Imagining the context in which it must have been said makes this... abhorable.  Yes, I know. 

I used to be quite the news hound.  I was in Germany the year the wall came down (though sadly not in Berlin) - that, um, made an impact.  Everything changed.  I used to watch the Sunday shows, read the papers... There was a time when I could name foreign leaders.  And I watched more than one hurricane drinking with friends and laughing at Anderson trying to stand upright in the wind.  But then I watched Katrina while sitting on the couch with my recently arrived son and I could not comprehend the incompetence.  As he got older, we got busier and less likely to turn on the news when he was around to hear about IEDs and fatality counts.  [Also, they had fired Aaron Brown]

I could go on about the whys and wherefores of why I wasn't engaged - in what I'm sure would be a yummy self-justifying defensive tone - but whatever the process I was starting to get sucked back in by the mid-east coverage.  The world was shifting - again.  And that's how I ended up watching the mother in Japan sobbing that her daughter was ripped out of her arms by the tsunami. 

The numbers will be horrific.  The video of the damage is surreal.  There were will be other horrors caught on tape.  That mom - - -

Words can't cover that.