A Smaller World

I lost a friend last Friday.  Alison Piepmeier was larger than life, a passionate and eloquent advocate for her daughter, Maybelle, and for equality in all things.  We met online, back when I was still writing, and then in person at my first NDSC convention in Washington DC in 2012.

2012 NDSC Convention

She missed the next few conventions for various reasons but I always assumed we'd meet up again at the next one.  But then her tumor came back.   I had planned to go help out for a weekend but the dates were moved and moved again and then there was no more time.   So in the middle of July, a week before my 5th NDSC convention, I manufactured a trip to Charleston and was able to spend an hour or so with her in the morning.  And then another hour in the afternoon.   She was weak, she occasionally fumbled, trying to find the right words, but was as insightful and vibrant as always.

Charleston, 7/11/16

I, however, couldn't find any words.  No profound, comforting thoughts about her looming death, or leaving her daughter nigh orphaned.  Nothing about what her friendship had meant to me.  I hugged her and told her I loved her and left flowers.  I hope that just showing up counted, a little.  I suspect my visit was more for my benefit that hers.  I worry it was intrusive - two plus precious hours lost to random online friend - but am profoundly grateful her mother let me have that time.

Even more so now that I couldn't attend her memorial on Friday.   At least I got to say goodbye in person.

Alison had this gift of making you feel like the most important person in the room.  She was warm and enthusiastic about everything from a FB snapshot to long rambling post.  You can see in the hundreds of comments and eulogies that she made everyone feel just as special and I know I am but one of hundreds who loved and will mourn her.  I am, by contrast, a tetchy introvert but her loss is that much more profound to my small world.  I hope I can show up for my other people with half as much gusto as she did.

Alison Piepmeier
12/11/72 - 8/12/16

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.

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.  

Membership Has Its Privileges

Yesterday I took The Girl 45 minutes into town to get her glasses repaired.  I was annoyed about 5 different things - not the least of which was that we bought her glasses, and the accompanying warranty, 45 minutes away.  The eye center is attached to the hospital… and right around a couple corners from the perinatal center, where we first discovered the extra bit of magic that was to enter our lives.  The Girl likes to run the empty halls on the weekend and invariably tries out this door.  I often think we should come back during the week and hang out.

Because, you know, advocacy.

Or maybe because I have a twisted sense of humor.

As we were leaving, a woman smiled at us and asked how old she was.  And while dealing with the gen pop is not one of my strong suits (talking! strangers!), something in her voice made me smile and slow.  

"She's six."

"My son is… my son was…"

She faltered. 

Her son was 50 but had passed.  She said he was a gift and touched everyone who met him.  

Which was why I was hugging this unnamed woman three seconds after we met, and crying, and kissing my girl, who was alarmed and urgently signing "home."  The long drive and missed appointments and everything else gnawing at me was forgotten.  

We joke about being members of this club, and there are hard things that come with it, but not much else will move me to hug complete strangers.  

Magic.  

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.  

Advocate Mom

Last year I wrote an Ode to the Convention for our local Ds group so if you're looking for a perky general NDSC Convention overview, go there.  It's all still spot on, except this year I met even more new dearest friends.  People I could spend hours & hours talking to, and who I'd get on a plane to go see tomorrow (and I don't say that lightly - the charm of jet travel is dead).  

 
Not that it was all social.  This was my third year going and I still had to make some hard choices between sessions. Perhaps because I wasn't feeling overwhelmed and frustrated enough with my life, I bypassed talks on inclusive education, technology, and cognition research (all dear to my heart) and went to the legislative action session, put on by Susan Goodman of the NDSC.  Oh, MAN.  That was not the right place to go for peace of mind.  There were no self congratulatory secret club hi-fives.  We are a population besieged and subject to the whims and grammatical errors of baby faced staffers drafting legislation in dark back rooms.  She talked about seclusion restraint, the ABLE Act, and Medicaid.  Issues that can wreck immediate and life altering change on families.  Apparently there's even talk of entwining IDEA with Common Core.  Is this a good idea?  Will it raise standards, ensure accountability?  Or will it erase decades of progress?  I have NO idea.  This is heavy policy wonk territory and so much of it depends on obscure studies and competing "experts."  So much depends on implementation and application by faceless bureaucrats.  It's overwhelming.

She also said something troubling - she said compared to other groups, the Down syndrome community is NOT particularly politically active.  

I was peripherally involved in the online campaign following Ethan Saylor's death and to be blunt, it left a not-so-great taste in my mouth.  The national groups weren't talking, the police were busy "investigating" themselves, and very, very few people gave a fuck.  Politicians, media giants, and celebrities who had children with Down syndrome stayed silent and ignored direct appeals for help.  Outside the Facebook group I was in, the internet let out a lazy *meh*.  Inside the FB group... well that was a PhD thesis on group dynamics begging to be written.  We were some pissed off parents with a righteous cause but there was also sniping, grumbling, and hurt feelings.  There were hundreds of ideas, letter campaigns, competing online petitions, and blogging manifestos - but in the end it all petered out.  20 angry letters go in a [round] file.  I doubt if any official ever got more than 100 letters, much less the 20,000 needed.  There were no marches in the streets.  No one chained themselves to the theater doors.  Turns out Ethan's mom was in favor of the police training many of us had lambasted as whitewash.  The officers who killed him were never charged.  I feel like we failed.

And then there's that pesky job-with-small-children situation.  I do enjoy my social media - I meah, hell,  I "have a blog" for whatever that's worth ($5 payable to google annually, if you're curious) - but I can barely keep up with the online petitions conveniently linked to in my FB feed.  I rarely make it to our local Ds group's fun events, much less to the serious stuff.  The thought of meeting with competing experts and parsing the fine print of my state's Medicaid law is.... just, no.   Susan Goodman suggested I make friends with my representatives' staffers....*snort*.  It takes a year for new co-workers' names to sink in (in fairness, turnover is high) and did I mention my lack of people skills?  I'm not going to do any cause any good if I show up with burnt cookies, stammering about obscure educational codes of which I have little understanding. 

There's also the small fact that I really haven't had to advocate for my daughter, not really. Not yet.  My girl's IEP team is fantastic and they've given, without us even asking, what other parents have to hire attorneys for.  No conflict.  There've been a couple doctors I haven't cared for and we've switched.  No big deal. I've chided people about the use of the R-word.  I hate the cold, hard eyes of the pre-teen girls at the park, but I stare them down and they keep their distance.  There aren't any campaign ribbons for besting 13 year olds.  [Though there really should be - those girls can be mean].  I find the number of competing Ds-interest groups a travesty of wasted resources, so I'm not going to start another, and the Great Letterbox debate bores me to tears. (It's a piece of paper, for God's sake - you think people will forget termination is an option if you don't mention it?  Gah.)  Unlike other, more natural advocates, I have had no searing experience to light a fire in my belly. 

But both my children love to sneak into our bed at night.  And as irritating as those elbows and feet are, I marvel at the fact that their safest, happiest place in the whole wide world is right there between mom and dad.  The level of  responsibility that entails brings me to my knees.  I'd like them to eventually venture forth in the world - not just so I can sleep better - but because it's their right as human beings.  I'd like it to be a reasonably safe & welcoming place.  It might not be, especially for my girl, but their trust requires me to try.  Small steps, people, small steps. 

And so with that it mind:  If you want to earn some good karma, contact your Senator and Representative to ask them to vote for the ABLE act.  This isn't a Down syndrome specific issue - all disabilities are welcome.  There is wealth of information, links, and pre-done templates right here, on the NDSC website, and if you don't know who your Rep is, you can find them here.  Send an email, make a phone call, drop a line on their facebook page.  Do good.  

Gigi.

Hello there.  I didn't actually intend to take an internet break, but the stress level at work had hit crisis level so I buckled down, hoping if I put in enough hours I could breathe in 2014.  Then there were the usual winter pathogens, Matt went to Montana for a week for work, and in the few quiet moments I had I, frankly, ended up watching a lot of TV because it required no conscious thought or social pleasantries.

Also, on December 4th, the day before Nelson Mandela died and 11 days before her 95th birthday, my Gigi died.  My dad called me that morning at work but I didn't leave or collapse dramatically onto the floor.  The holidays weren't cancelled and the laundry hasn't stopped.  But I can hardly bear to talk about it - not with Matt, not with my various siblings, and certainly not during holiday parties with well meaning relatives.  I don't want to read sweet condolence notes or discuss memorial plans.  I'm holding this in a small tight ball deep in my gut because if I expose it to light it might just crumble to ash and blow away.

There is so much tragedy in the world, so much injustice and violence, no one will be especially moved at the death of someone nearly 95 years old, nor my grief thereof.   Mandela was celebrated the world over but no one said he passed too soon.  We all leave, eventually, and she had lived well and long.  She would have preferred to die last January, after her aneurysm, but she died peacefully in her home, cared for and loved.  There was no news coverage, no presidential musings, but my world has shrunk and darkened.

Ironically, despite living in Los Angeles for 60 plus years, she loved dreary, rainy days.  She would have loved Seattle.  

A friend of mine, facing her own loss, quoted Kate Braestrup, "One hundred percent of all relationships end: paternal, maternal, spousal, avuncular, friendly, or filial; one way or another, you will lose everyone you love, everyone you cannot bear to lose. 

Everyone you cannot bear to lose.  She was my rock and safe haven.  I moved around so much as a kid my most vivid memories are actually of her home, her magnolia tree and camellias out back, her favorite chair, her every room.  Even the 7-11 at the bottom of her hill.  She could whip up a gourmet dinner out of nothing and was the only person ever who could cajole me into eating broccoli.  Because of her I believe in the transformative power of garnishes - even her simplest meals were beautiful.  Just add parsley.  Maybe a slice of lemon.  

I recently finished the second to last jar of her plum chutney.  I can't decide whether to save the last jar in perpetuity or eat it alone, strait, in my closet.  I made bacon and for the first time saved the grease, (though my sister will be happy to know it's in the fridge - Gigi's jar was kept under the stove).  I drank a gin and tonic, her favorite, out of the fancy glasses she gave Matt after our trip together to Ireland.  I did not do anything on her birthday, except pretend it wasn't.  I sent out cards this year, for the first time since 2010, and updated my address list but couldn't delete her name.  I kept thinking I'd forgotten someone when Christmas shopping, and kept staring at my lists, until I realized it was her.  She was entirely impossible to buy anything for. 

Ireland, 2000

I just realized my daughter squinches up her face just like Gigi when she grins.  

I cannot bear to think what will become of her house or her beloved lemon tree.  And I suddenly understand why relatives become grabby after people die.  It's not the money, it's the need to cling to what's left, to grab the shadow before it fades.  Salvaging her house isn't remotely within our budget but I wonder if she'd parceled out her cookbooks, her drawer of clipped out recipes, or her little broiler.  She'd been labeling stuff with her grandkids' names for years, planned bequests via sharpie & masking tape, but I doubt she thought what I'd treasure most is the memory of our meals together.  

Braestrup continues with, "One response to this appalling reality is to posit the existence of heaven, a place where everyone gets to be together again, just like the old days...In the meantime, however, what are those of us still here on earth to do in the face of loss?...Love more. Start with your siblings, or your spouse, or your parents, but don't stop there. Love whoever needs what you have; love the ones who have been placed in your path. It seems so obvious, doesn't it? It is the kind of knowledge we all should know, and instead even the wisest need reminders. Fortunately, the reminders do come, from sages and prophets and out of the mouths of babes: If your heart breaks, let it break open. Love more."

I could tell you what an extraordinary woman my Gigi was, but it all fades next to the fact that this was how she lived.  My dad, one of the least saccharine people you'd ever meet, wrote she "had absolutely no quid pro quo about life.  You just felt love.  All give, no take. A lesson for us all."

Dammit.

The creatures in my care

I have this recurring dream that I'm at the beach with the kids and I lose them both in the waves.  I don't know where to look and they've been separated - finding one precludes finding the other.  I have other dreams where they disappear into a lake or the woods, or over a ledge.  Natural fears of motherhood, I suppose.

Except tonight I nearly did lose my girl - I was in the bathroom and she was in my bedroom watching TV.  The alarm chimes anytime an outside door is opened and I did hear it but seconds must have lumbered by as I thought it must be The Boy, who was downstairs, or maybe one of the dogs pushing the back door open, or, or, or...

I don't remember even forming a conscious thought but I was suddenly running. The girl was not watching TV.  The gate at the top of the stairs was open.  The back door was closed. The laundry room door leading to the garage was closed but I knew, and I flew outside, because she likes to close doors behind her and it was too quiet.  The garage door was open and I remembered I'd noticed that earlier and forgot to close it because the kids, dinner, dogs, the usual state of chaos. 

She was running. Not exactly in the middle of the street but definitely not on the sidewalk.  And she was wearing a black shirt, because I'd put her Halloween costume back on her trying to get a decent picture, earlier.  She is not that tall, being only 5, and having a 47th chromosome too boot.  The yellow striped bee tights wouldn't have provided much warning for the fucking teenagers who drive too fast down our streets, texting & sexting, & looking down, fiddling with the radio.  They wouldn't have been able to see her.  Especially not now that time changed and it's dark out.

And there was a car of course.  Two, no just one house down, though not speeding. And the bastards looked rather amused as they rolled by, and not at all horrified at the death they nearly unleashed, because all they saw was a shrieking middle aged woman grabbing a small child on the edge of their property line, a perfectly safe distance away, and they saw the useless dogs come running out, free, and too late, chaos spilling out.  They did not slow down much, to make sure they didn't hit a dog, though in fairness they weren't going that fast.  They probably didn't see I was holding my pants up, because I just thought to run, and not button. But I did not care if the dogs ran away or were hit, just then, or if my pants fell down because I was still shrieking, in my head.  I was not yet angry at the dogs, who should have barked a warning, or my son who is supposed to close the garage when he comes inside, or myself who was so very careless and nearly dropped the entire universe.  I'm still shrieking, a little. 

I'm never going to sleep well again.  

Running:

Bonus:

Little girl on a big street:

31 for 21: Part 2 of 2 (or 3). Murphy

Part 1 is here, or a whopping two posts ago if you use the older button.

I'm going to make everyone uncomfortable and seamlessly (ha!) shift gears from thinking about people dying to dogs.  More fun that a barrel o' monkeys around here!

~~~~~~~~~~~~~~

We adopted Murphy a month or two before I got pregnant with The Girl.  He was 80+ pounds and the shelter described him as "spirited."

A more inadequate word was never uttered - the mere mention of it now can trigger peals of laughter.

We already had two dogs and were soon to discover we had NICU and PICU stays in our future, but he'd been on my brother's short list and lost out to a quiet redhead.  Because I am a giant ball of mush, once I saw him I couldn't just leave him, caged and family-less.  What's one more dog?

Exponential chaos, that's what

I'm no longer allowed to visit any dog rescue websites or shelters.

He is slightly dog aggressive and has worn a trench along the fence in his quixotical efforts to eat the little dog next door.  A trench that fills with water in the rain, which he churns into mud as he gallops, and which is almost impossible to wash off because the top soil is long gone and he's well into the clay.

But oh-so-gentle with the kids.

Patiently waiting.

He is severely claustrophobic, which we discovered when he ate our wall trying to escape the basement during a thunder storm.  He'd already eaten the laundry room door and the upstairs banister dowels when he'd gotten stuck accidentally, but I figured the basement left him plenty of room.  Silly me.

Patiently waiting for me to turn my back

Should I mention the shedding?  There are clouds - sweaters - swirling mountains of dog hair that accumulate daily.  We may be singlehandedly propping up 3M's lint roller business.

But he is a fabulous watch dog, with that lovely deep throated roar that scares off errant teenagers and Fed Ex men.  I've always believed that even someone hopped up on something will retain a vestigial fear of big loud dogs and pick a different house, so I've never minded much, except maybe during nap time, even though it is usually a passing neighbor and not a cracked out kidnapper he's warning off.

Scary watch dog. 

No really, here he is on duty.

He is also one of the happiest damn dogs I've ever owned.  He is obsessed -obsessed- with his ball and performs gasp inducing acrobatics in his efforts to catch it before the bounce.  He'll fly back up the stairs to deposit the ball carefully at your feet and then, not so much race off again, but bounce like Tigger, filled with glee that you're going to throw it one more time.  And then again.  And again.

His joy in those moments is Zen like.  All the bullshit of the day fades because The Ball! Flying! Naaiillleed It!                           

Last Friday night he was whimpering and pacing.  I assumed he'd pulled something mid-pirouette. I really should learn - it's never just a strain.  Saturday morning it turned into yelps and then I was sure it was something awful - intestinal blockage, flipped stomach, heart failure, cancer - again.  I drove to the vet in tears.   It's not cancer.  Cancer was... easy isn't the right word but Maude was an older doggie and in terrific pain and it was terminal.

Murphy has a congenitally* malformed hip bone - see the nice clean ball & socket on the right?  And the lumpy blob of bone on the left?  It's grinding into his hip socket, bone on bone.  The vet thinks he did something to trigger it and/or his "ability to compensate" gave out.   She agreed the $5000 hip replacement wasn't realistic but suggested an $800 femoral head ostectomy.  We can try to medically manage too, assuming the current symptoms fade, but either way there should be no more pirouetting or leaping.  No more late afternoon Zen moments with all that infectious joy.
     *BUT OF COURSE IT IS

Which is why I'm troubled by how we decide what is and isn't worthwhile.  At bedtime Murphy will trot upstairs and quietly curl up in a corner (if we're watching - if not, he makes a beeline for the guest bed) but during the day he's happiest outside, waiting for his services to be needed to chase off the neighbors or retrieve his ball.  He comes inside to check on us, get his ears scratched, and shed some more, but soon gets anxious and wants back out.  Even assuming we could scrape together the money for the surgery it seems to be a rather intense recovery period with -what?- on the other side?  Slow quiet walks?  Enforced inside time?

That is Matt he's happily crushing.  Nothing like an 80# lap dog.

I keep hearing Van Ingram's brother, "[He] spent half his time jumping and spinning and dancing around the hallways...his whole life was about movement." 

So is Murphy's.  

I'm not comparing people and dogs, I'm just...NOT, but even what seemed like the right thing to do with Maude suddenly becomes a lot more complicated when it's not terminal and just goes to that nasty phrase, "quality of life."  Murphy is about 8, give or take a couple years, so should have at least 4 years before reaching "that age," when the end is pressing down and it seems only kind to offer a gentle passing. And instead of quietly judging movie plots and others' decisions (about people) from the sidelines, suddenly the calculation is mine alone to make.  How much pain is too much?  How much time is left?  What shreds of happiness survive?  Do we have the money?

We might have a bit of a reprieve - By Wednesday or so he was bouncing again, trolling the counters on his hind legs, and giving me his ball for a game of catch.  (I may have even thrown it for him once.)  I've cut his pain meds in half but this morning just before another dose he let out a little yelp so... I don't know.  I'll see what the vet says about long term pain management versus surgery.  Live large and go out without compromise, right?

Did I mention the counter trolling?  Bad dog!

Ugh.  Way to gut punch me with a life lesson, universe, just as I was building myself a nice, safe tower of unequivocalness.  You couldn't spare my effing dog?

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?

In 'n Out

I spent the last week in Los Angeles with Gigi - she slept a lot and didn't have much to say so I was able to catch up on Facebook and my reader.   I did read everything you wrote but started the week with over 1000 posts so my usual charming, pithy comments (ha!) have been withheld in the interest of time management.  I hope y'all forgive me.

The last six weeks of work, since losing a co-worker, and this week, sitting next to my grandmother who would very much like to die, have been draining.  There were the usual stand by travel shenanigans so Matt ended up staying home with the kids.  It should have been a relaxing week - no minions to tend to & no corporate gods to worship.  I ran everyday and watched movies with her, as well as reading, but as the work stress slide away, I fretted over bedsores and those awful words, "quality of life", instead.  She didn't want to get in her wheelchair and go outside.  She didn't care what we watched on TV.  She didn't care what was for dinner.  She cared very much that the kids weren't coming but that was the one thing I couldn't give her.

As nice as it would have been nice to close out this week with some deep, insightful thoughts on disability and the meaning of life, I actually just feel tired and sad.  I bought some lamb chops for our last dinner together and couldn't find the tiny cast iron broiler she'd use when she cooked for just the two of us - I nearly started crying.  Then I had to cut the lamb off the bone and into tiny pieces for her.  I made potatoes instead of couscous, which is what she would have served, because the potatoes were easier for her to eat.  And when her aide had said earlier she didn't care for lamb and would pull something from the freezer I was relieved because that was our meal, and our tiny broiler wouldn't have been big enough for lamb chops for three.

Which was not a very nice thought, considering this is the lady taking care of my grandmother.

The broiler, found.

I also found myself thoroughly impatient with the online debate over inspiration porn & ableism, with parents grieving their reasonably healthy, living children &, perversely, those criticizing the parents for adding to the "grief narrative".  I'd like someone to come explain to my grandmother how the utensils she can now barely hold are ableist and figure out some other way for her to eat.  Assuming she can hear you.  Because the pillow keeps knocking her hearing aids out.  Damn ALL the words.

I have been a colossal grump.

I was even a total dick to one guy on FB over what, in retrospect, was a fairly innocuous bit about "better blogging".  I'm still cringing about that - the person I am in my head would have shrugged and moved on.  Maybe it's a good thing I haven't been commenting?  (for everyone else, that is)  Hopefully the universe will forgive me that one.

I usually DO enjoy the conversations.  Language matters.  It shapes our perceptions, chips away at the pity, and kills the "special angel" comments.  Advocacy, writ large over the decades, lead to our recent, delightfully awesome IEP meeting.  But the lady taking care of my grandmother, who once worked with disabled kids (*cough*  "kids with disabilities"), and who used about 10 different cringe-worthy non-people-first terms in one twenty minute conversation, made my grandmother enchiladas and told me about a time she called her friend, the council women, because her "little Downs girl" belonged in the regular class and she was going to take on the entire Los Angeles school district to make sure it happened.  Sometimes language is just a jumble of verbs and adjectives.

Sometimes we I need to be free to tell my story, to grieve Gigi's lost independence without regard for a  "disability narrative", or fret over my child's missing voice without being an "ableist".  Without worrying about how to get 18,000 page views or wondering if my header picture is attractive enough.   This was never really that kind of blog, anyway - obviously, given my 3 readers.  Matt and I are going to the NDSC conference next weekend.  Maybe I'll get a little artsy advocacy inspiration going and get back in the game.  

The quality only matters if you like cheeseburgers.

An Open Letter to Everyone with a public contact page

Federal Bureau of Investigations
Attn: Robert Mueller, Director
935 Pennsylvania Avenue, NW
Washington, DC 20535
~~~~~~~~~~~

Federal Bureau of Investigations
Civil Rights Division, Criminal Section

950 Pennsylvania Avenue, Northwest
Washington, DC 20530

~~~~~~~~~~~

FBI Field Office – Baltimore
Special Agent in Charge, Stephen E. Vogt

2600 Lord Baltimore Drive
Baltimore, MD 21244
(410) 265-8080 phone.
~~~~~~~~~~~

U.S. Department of Justice

Civil Rights Division

950 Pennsylvania Avenue, N.W.
Office of the Assistant Attorney General, Main
Washington, D.C. 20530
AskDOJ@usdoj.gov
(202) 514-4609; (202) 353-1555
(TTY) : (202) 514-0716
Fax:  202 307-1379
~~~~~~~~~~~

ACLU of Maryland
Executive Director: Susan Goering
3600 Clipper Mill Road, Suite 350
Baltimore, Maryland 21211
Phone: (410) 889-8555; (240) 274-5295
Email: aclu@aclu-md.org
Web: http://www.aclu-md.org
Requests for assistance are accepted on their Civil Rights Complaint Line. The line is in operation on Tuesdays and Thursdays between 1:00 and 3:00 pm: (443) 524-2558.
~~~~~~~~~~~

ACLU – National office

125 Broad Street, 18th Floor

New York NY 10004

212-549-2500

~~~~~~~~~~~

Maryland State Police
Criminal Investigation Bureau
1201 Reisterstown Road
Pikesville, MD 21208-3899
410-653-4212

msp.cib@maryland.gov

~~~~~~~~~~~

Office of the Attorney General, MD

Attorney General Douglas F. Gansler
200 St. Paul Place
Baltimore, MD 21202

(410) 576-6300

(888) 743-0023 toll-free in Maryland
TDD: (410) 576-6372

~~~~~~~~~~~

J. Charles Smith, III

MD State's Attorney, for Frederick County Maryland

State's Attorney's Office
100 W Patrick Street
Frederick, MD  21701
(301) 600-1523   (voice)
(301) 600-2195    (fax)

jcsmith@statesattorney.us
~~~~~~~~~~~

Congresswoman Cathy McMorris Rodgers
203 Cannon House Office Bldg.
Washington, D.C. 20515
phone: 202-225-2006
fax: 202-225-3392

~~~~~~~~~~~

Ladies & Gentlemen:

I’m writing you today to request the DOJ and FBI open an independent inquiry into the death of Mr. Robert Saylor.  

Mr. Saylor had Down syndrome.  He died when he tried to stay for a second showing of a movie.  I do not dismiss the fact that he should have left the theater or bought another ticket.  But he had a caretaker nearby and his mother was on her way to the theater to intervene.  Nonetheless, instead of waiting or involving the family, 3 off duty police officers wrestled him to the floor where he died, just after calling out for his mother. The medical examiner classified his death as a homicide but wrote “This individual was already compromised by his Down’s Syndrome” [sic].  There were 17 witnesses in the theater but none of them testified.  The grand jury of Frederick County, after hearing only from the three officers and the ME, unsurprisingly failed to pursue charges. 

Why?  He died for the price of a movie ticket.  I believe he died because of a continuing bias against those with disabilities, particularly intellectual disabilities.  The autopsy report essentially said he died because of his genetic makeup.  He died because he was different and the officers treated that difference as less worthy of a reasoned, proportionate response.  Less worthy of life and liberty.  

Following a meeting with several national Down syndrome organizations, the DOJ representative is quoted as saying, “We’re trying to assess the situation and see how much community tension there is.” 

The Down syndrome community is not large.  The special needs community in general is too busy dealing with schools and therapies and doctors to march en masse to your office door.  There will be no rioting in the streets.  Mr. Saylor is not an adorable 6 year old girl in ribbons and pigtails so there will be no international press events.  But I ask you – if your child had been wrestled to the ground, handcuffed, and died over the price of a movie ticket, what would you do?  Are these the men you want patrolling your streets?  Do you trust these men to interview your sons?  If Robert Saylor were black or Hispanic or Sikh would the case merit a second look?  Are these officers any less worthy of punishment because Mr. Saylor had a relatively rare disability?  Since when do our civil liberties depend on public outcry?  

I believe the officers in question acted with criminal disregard for the man’s safety, used unreasonable and excessive force, and violated Title 18, U.S.C., Section 242 and Title 18, U.S.C., Section 249.  I believe their actions need to be investigated by an independent agency, one less inclined to protect its own than Frederick County.  I believe the laws and rights and protections afforded this nation’s people extend to every citizen, and those designed to protect the most vulnerable among us must be enforced, independent of “public outcry,” lest we abandon the rule of law and become a nation of bullies and monsters.

I look forward to hearing from you.

~~~~~~~~~~~~~~~
Permission to copy, amend, elaborate on, etc. is hereby granted provided you print or email to the addresses listed. :)

And if you haven't the faintest idea what I'm talking about, additional information on the Robert Saylor story can be found at the NY Times (linked) and the Washington Post. Or Google. There are several petitions at change.org but the biggest - and the one signed by Robert Saylor's grandfather - is here.