Four - Sixteen

Billy's Graham's wife was once asked if she'd ever considered divorce.
"Divorce?  No.  Murder?  Absolutely."

That answer has always cracked me up because as much as love this man, dear gawd but he can be infuriating.  He snores and can be grouchy in the morning.  He leaves his wet towels on the bed and doesn't replace the bag in the garbage can.  And he always "puts away" my stuff where I can't find it.  I have occasionally wondered how one would, hypothetically speaking of course, dispose of a body.  But he is the first one I want to talk to in the morning and the last one at night, and the only hand I'll hold in the movie theater (so as long as I picked the movie).

The Grahams were married over 60 years.  We're only 16 in but I can't wait for the next fifty.

Happy Anniversary, Matt!

Three - Principessa

Who need words with a smile like this?  

Two - Showing Up

Yes, more about the race.  Sort of.

Matt's been traveling a lot lately, and was gone for two full weeks before my race.  My training was haphazard at best.

My "long" weekend runs were 3 miles, five, another five (because I couldn't quite manage six), nine (back and forth on a perfectly flat levee), then nothing.  Then more nothing.  I ran three miles the day before out of remorse and was lucky I didn't pull anything.

Not exactly the ideal situation.  But I had paid good cash money to get up at oh-dark-thirty to sweat near 5000 people I didn't know.  Even if I had trained more it could have rained or been swelteringly hot.  I could have crashed my car on the drive over.  I could have tripped on a pothole and fractured my patella after parking, without even eyeing the starting line.  

As it happens, it was a beautiful fall day.  I walked a bit around mile 10 and developed an impressive 3" long blister on my foot but I finished hard and got my race shirt.  Not a single damn person cares that I finished 20 minutes slower this year than I did in 2013.

I showed up.

Life is messy.  You can end up a single parent.  You can bomb the basics.  But you show up and suck the marrow and embrace the ugly cow medal because this is all there ever will be.  Our existence here is precious and short, no matter how well planned, and it would be a great tragedy if perfection cudgeled the good.

I am, of course, just talking about running.  Far be it from me to postulate about other issues.

One - Inside Jokes

I ran a half marathon last weekend.   While dragging my children thru the vendor expo for my race number, I passed a local running club's table.  They were undeterred by my public scowl and, since I love a brave soul, I slowed.  They pounced.  They were warm and funny and we joked about my bad ankle and their off road routes.  

If I was looking for something to do in November, they said, they were hosting a half marathon to benefit the Special Olympics.   

Ah-HA!  

So you saw me as a soft target, eh? 

They tried to look innocent.  I nodded at my girl and raised my eyebrows.  

They grinned.  I signed up.  

I later bought flowers for my mother in law for watching my children during the race.  I picked up some tulips for myself.  Because schmaltz & cliches aside, I fucking love the Dutch.  

Of Time and Place

Just before school let out, I learned The Girl's favorite para had a brother with Down syndrome.  He wasn't allowed to go to school, suggesting he was born in the 1960s, when babies with Ds were still routinely institutionalized.  I wonder about his parents, who defied all social convention when they took him home.  I wonder how bittersweet it must have been for them when IDEA was enacted in 1975, 15(?) years too late.

I wonder if they feel a little twinge knowing their daughter spends her days enabling something their son never had.

1975 is the same year Gore-tex started their medical division.  I don't know when the survival rate for pediatric open heart surgery shifted from abysmal to only slightly terrifying, but 33 years later a tiny piece of rain jacket fixed the giant gaping hole in my daughter's heart.  Had she been born the same year I was, she would have died.

In 1982, relying on medical advice, an appellate court in Indiana allowed six day old Baby Doe to die.  Baby Doe had Down syndrome - a fact his parents found so abhorrent, rather than allow someone else to adopt him & fix a fairly routine medical issue, they withheld food and water till stomach acid ate his lungs.

I wonder about the parents who would have chewed off their own arm for corrective surgery but didn't have caring doctors or the right technology.  I imagine it would sting a little, seeing my girl running across the playground with only a faint scar on her chest to document fortune's grace, knowing their own child was just one decade or late night lab discovery shy of a full life.     

I attended the NDSC convention in June and marveled at the self congratulatory nature of it all.   There is still much work to be done - 5 minutes of Q&A about school inclusion is painful confirmation of this, & my pedicure lady at the hotel reminded me that children w/Ds in Serbia are still hidden away and shameful.  But in this country, today, we have dedicated professionals, best practices, and the full weight and force of federal law.  We have the ABLE act.  We have the internet and each other.  

And we have medical research.  

It's not uncommon to hear parents fervently swear they wouldn't change a thing about their child.  "She wouldn't be who she is without Down syndrome!"  I wonder how much of this is a reflexive reaction to  the trolls and naysayers - we become such fearsome advocates for our children we fear anything other than rainbow spewing giddiness will validate the eugenicists or scare a frightened expectant girl into a clinic.

I think this is the secular version of "special angels sent by God."  My child has a third copy of the 21st chromosome and we do not need to ascribe her otherworldly missions or insight to honor her place in this world.  That extra "love chromosome" (gag) dicked with her heart and landed her in the  PICU when she was 3 months old.  That extra coding dicks around with the chemicals and proteins in her brain and makes her neurons fire inefficiently.  This makes it hard for her to learn things and exceptionally difficult for her to express herself.  Assuming her soul would be any less fantastic if the chemical soup in her head processed language faster is tantamount to claiming she's awesome because she is slow.  It is as reductive and damaging as finding an amputee inspiring simply because they get out of bed in the morning.  My daughter is a fucking delight - not because she has Down syndrome, but because she is.  And it kills me that she cannot tell me her stories.

At the NDSC conference, as I heard about research into drugs that may quiet overactive proteins or activate sleepy neural pathways, I wondered about the doors we will never open. None of the research sounds remotely close to actual application and, just as I started to daydream about experimenting on my 7 year old, one of the researchers mentioned thalidomide.  Woe betide those that fuck with the delicate balance of the human body.

But I wonder if twenty or forty years from now Down syndrome will be medically treated, just like  diabetes or hypothyroidism.  I wonder if I will feel a little twinge in my sunset years, seeing stories about miracles of modern medicine, valedictorians with a little extra, or ivy leaguers.  I wonder if I will regret my caution, just as the little pills prove safe… just as I start watching for signs of Alzheimer's in my baby.  I wonder.

Other Milestones

The Boy needed socks.  I knew he'd graduated into adult sizes but in the shoe store you just mosey one aisle over & it's no big deal, right?  But I stood next to the superhero underwear, confused, wondering what was wrong with Target's inventory management that I couldn't find the right size.  The men's section?  That couldn't be right, could it?  The men's section is in a completely different part of the store, separated from the children by rows of electronics & camping gear.  I found his socks there, next to boxer shorts wrapped in pictures of grown men with beards & chest hair, then floated around the rest of the store clutching those white crews to my chest like the baby I swear I was holding only yesterday. 

Almost grown. 

Dear Doc

Dear Doc -

Once upon a time there was a beautiful little girl.  She was very special but, as in all fairy tales, she was given certain challenges.  As soon as she was born she was whisked off to the first doctor, but he reached deep inside her heart and made it strong.  His magic would allow the girl to live a long life and run fast. The girl's parents were well pleased.

Her parents then took her to the eye doctor so she could see all the flowers and story books.  They took her to an ear doctor so she could hear her family laugh and the dogs bark.  There were other people for her feet and still others for her neck - courtiers abounded.

But some of these doctors gave her shots and stuck needles in her arms.  Sometimes she would visit a doctor, fall asleep, and wake up feeling sick in a different place.  That was scary.  One time the little girl was very, very ill and stayed in a hospital where they had the temerity to vacuum her nose like a peasant.  Once they actually held her trying to get pictures!  Audacious paparazzi!

The girl did not care for these gross invasions of personal space.  Their paltry compensation - stickers! ice cream! - was beneath her and she scorned it all.  (Well, maybe not the ice cream but it was wildly insufficient.)

The girl began to believe her parents had abdicated their duties.  She ignored their entreaties and became an expert at spotting and eluding anyone with medical training.  If cornered, she would roar like a dragon and fight back.  Hard.

Though she was impressively fierce, this made her parents sad.  They loved her very much and wanted her to have all the flowers and laughter.  They believed these alchemists could help, but they wanted her to be happy too.  Confusion and darkness spread across the land.  

But then the girl met you, Doc.  She watched you coax reluctant patients into treatment.  She saw you check their ears, check their eyes, and find out what was going on.  She saw how much you cared and how hard you worked to help.  She watched you reset limbs, excise debris, and patch tears.  She saw how happy your patients were by the end of each episode.

Because of you, the girl decided to give the doctors another chance.  Perhaps not aallll of them were evil trolls, after all?  She started bringing you with her to appointments for a second opinion.  

Like a food taster of old, you would gallantly test the equipment on her behalf.  

You submitted to exams to evaluate the physician's technique.  Charlatans who failed to respect or recognize their peer were quickly dispatched. 

Because of you, the girl was properly treated, with deference and every courtesy.  Because of you, the girl's parents were assured she was given every advantage.  Peace was restored and both the girl and the parents were pleased.  

Thank you, Doc McStuffins.  

Thank you.  

Monday, Monday

Things to be grateful for on this first day of yet another week:

Pediatric dentists who have Saturday hours, and who call to remind me to order my girl's pre-dental antibiotics. 

And the sun, which made the pavement sparkle like the night sky as I walked over to the other building for yet another meeting. 

The Road Taken

Last Sunday I ran 9 miles.  It was in the 20s with a biting wind and I considered bailing, but I paid good cash money for a race next month, my first in 18 months, and I don't want to embarrass myself.

(Plantar fasciitis is the devil.  It's been a slow recovery).

I also needed to get out the house.  I was snappy and tense and didn't like the sound of my voice; nor did I want to deal with the damn dirty kitchen (again) or laundry pile (still and always).

The sidewalks were covered in snow and ice, forcing me & my shaky, aging ankles onto the road.    I told myself I'd just do the 5mile loop around town.

Two miles in, my hands were still cold inside my gloves and I'd stopped blowing my nose because the snot was insulating my sinuses.  But a mile later, when I reached the spot where my roads diverged, I turned right and kept going.

I ran facing traffic but my presence in the street still enraged one driver enough to warrant a double angry fist pump.  Another laid on the horn so aggressively I nearly fell into a snow bank.  But I also got a thumbs up from a farmer in a pick up and a not unattractive man grinned at me at a stop sign.  Most drivers just edged over a few feet and carried on.

By the time I made it back to my car and home I felt peaceful.  It was a nice reminder in the midst of my mid-life angst that the journey is the point.  Even off path and against traffic.

Still Here.

So.  Here we are, February again.  The holidays happened.  Winter is still happening.  I probably owe y'all an update, yes?

The extended family converged not once, but twice this year - at Thanksgiving here in flyover country and again in CA for Christmas.  There was a remarkable lack of drama - which is, I suppose, dramatic in its absence.  Turns out we actually all like each other.

There were no Christmas cards.  Whoops!  There was a photo shoot but then….  yeah.

Papa Fritz was very excited to take the kids out on his new boat.  I had more than a couple nightmares about the ocean swallowing my children, and practical angst my girl would freak the fuck out on the boat, but she LOVED it and no one drown.  Win! 

I am tired though.  On New Years Eve it dawned on me that my son is 9 1/2 years old and the time given me to shape him into a reasonable human being is half over.  What will he remember of his childhood?  The unending grind of school, homework and his frazzled mommy - or the Christmas we went sailing with Papa?   What will I remember of these years?  They seem too much a blur to claim the victory of a life well lived.  Too many days are spent grinding thru work-dinner-homework with an eye on the clock and yet ten years just vanished.  At the end I'll only have this woefully neglected blog and random snapshots to remind me my children were once small and needy… shouldn't I be savoring it all more?  Or is that just so much hippy-HuffPost-airbrushed bullshit?

I'm obviously in the midst of some mid-life post-vacation late-winter existential meh.  I'm weirdly not unhappy and we have lots of good things coming up, but this milestone has done a number on my head.  A situation not improved when I re-watched the jelly bean video.  Which is silly and triggers my sweet tooth, but I figure I only have about 14,000 beans left.  What shall I do?