Growth

The Girl's biennial cardiology check up was a couple weeks ago.  There was modest bribery required for the ultrasound but compared to years past when she had to be held down, screaming, it was a massive success.  She's growing up. 

As we waited for the doctor at the end, I heard him outside the door, "Oh.... well now.  That's interesting." 

Interesting, in the clinical setting, is by definition bad.  Especially in that sad, flat tone he used. 

But this is not a story about PTSD or flashbacks.  I sighed, but didn't feel the bottom of yet another cliff come rushing toward us.  Which is, I suppose, progress.  Maybe I'm finally growing up too.

Turns out his comment had nothing to do with us and he pronounced her heart repair nigh perfect.  Come back in 2 years.

In the waiting room, before the bribes and the all clear, there had been 3 children giving my daughter the side eye.  At one point the oldest hissed loudly at her brother to STOP STARING.  I ignored them because I do not need to school every human being with whom my daughter comes into contact.  Their mother eventually came out holding a very small baby, gave my girl a hard look, then suggested her children all say goodbye to their Friend in a too bright voice.  The voice that meant Very Special Friend, capitalized, and that makes my teeth hurt from its forced gaiety and saccharine.  I ignored her too because I am not going sanction such awkwardness and the kids hadn't even been playing together and ffs, lady, really?

Except she turned as she was leaving and her baby had the most beautiful almond eyes....

Oops.

I dimly remember stalking people in the grocery store and stumbling over myself and my words when my girl was small and I didn't know What This All Meant (also capitalized).  We have come such a long way.  I hope that mother and all her Very Special Friends find peace.  I wish whatever the doctor was reading was only mildly interesting and didn't involve his newest patient.  I think maybe I could try to be less of a dick around strangers. 

Top of Mt Tam in CA - no cliffs involved.

't

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.  

All clear

Last week I went in for a mammogram.  On Mother’s Day Matt handed me a letter asking me to come back for more tests.  My comment at the time ran along the lines of, “Are you fucking kidding me?  I don’t fucking have time for this fucking shit.”   

Hey, no one promised you great prose or deep thoughts here.    

The dark voice in my head decided that because the universe is stalking us and since my girl’s bloodwork came back clear, it must have set its sights on me instead and I was going to end up bald, tragically waste away, and orphan my children.

I also instantly decided that I wasn’t all that attached to my boobs.  They had failed to land me any Playboy gigs and, despite many tears and herbs and lactation consults, failed to fulfill their primary duty of feeding my babies.  Double mastectomy?  No problem.  Cut ‘em off. 

What I was really freaked out about was the ultrasound.  Which is about the most innocuous, peaceful test you can get – dark room, nice pillow, warm gel, little wand… it’s almost like getting a massage.  Except at one perfectly routine ultrasound I found out my son had died.  And at another found out my girl’s heart could let her die too. 

Apart from a brief expletive on FB, I downplayed the call back.  My peeps on FB assured me it happened all the time and was perfectly routine.  They would have called if it were anything serious.  I am not a wee fragile flower and refuse to freak out over remote hypotheticals when there is real actual tragedy in the world.  (At least I won’t do it publicly.)  I joked with Matt about the life insurance payout and reminded him to get a pre-nup so the hot nanny doesn’t run off with the kids’ money.  But when alone in the shower and in the car, I’d choke up – not about the leaving my children or the hot nanny or dying, but about being in that fucking room again and getting more bad news.  A perfectly normal response, right?  No? 

I believe that is what they call an emotional trigger. 

I went back yesterday and was smooshed and squeezed in a highly intimate and unnatural manner and they pronounced me good to go. 

Right.  No big deal.  So unexciting, in fact, the additional films did the trick and I didn’t even get to the ultrasound.  *phew*

I went home, went running on my achy feet because I am alive goddammit and I can, had a glass of wine, and pondered the possibility that perhaps the universe is not stalking us after all and perhaps - just maybe - I might have some residual anxiety issues instead. 

Not my boobs.

Obviously.  

"Please No Gifts" - One Life Lesson, in 9 Parts

One rather awesome kid, plus
One fabulous group rate at the local pool, plus
One small measure of maternal guilt for skipping the annual Christmas cookie party and never buying him that swing set, plus
One more pinch of guilt for working, thus restricting his social & after school activities, plus
One set of lifeguards to minimize any incidental drowning, plus
One mega class of 30 kids, plus
One mother's hefty aversion to mountains of plastic crap, plus
One small teachable moment nudge from Mommy, plus
One (or two) reminders that he'll still get lots of stuff at the family party, equals
One memorable birthday blow-out and a mountain of donations for the Crisis Nursery.

Damn, but I am proud of him.
Happy 9th Birthday.

[I don't want to over-sell our altruism because my primary motivation in suggesting this admittedly WAS to keep the small, trip-able, foot-bruising plastastica out of the house but I think it worked out for the other parties too. :) ]

I Run 4

Speaking of communities and running (ugh, that's not even funny yet), a few months ago I signed up with I Run 4.  The idea is simple - runners will run for and connect with those who can't, mostly via photos and FB posts.  It started with one guy and an offhand comment and now has almost 9000 members.

And, I thought, a great potential for cheesy inspiration porn.

But I have a vast sucking need for motivation.  Matt is more likely to offer me ice cream and a warm blanket than hand me my shoes and such is the magnitude of my sloth-dom, I've been known to actually do laundry while procrastinating.

(though that doesn't necessary mean that I will)

I like the idea that I run.  I'm proud of my race bibs and calf muscles (if you squint you can't see the pasty whiteness or spider veins).  I love the post run high and sometimes, if I'm very lucky, I feel stronger than all my problems during, but putting on my shoes and taking that first long stride is a Big Deal, every time.  So I sign up for races.  

I am a huge sucker for these silly motivational memes.

And I signed up to run for someone else.
Because you know what I really need is more responsibility.

But I also thought it might be a nice thing to do for someone, since we have no money to donate or time to volunteer.  And, squabbles and random snarkiness (auto correct changed that to snakiness.  That too) aside, the Down syndrome and blogging communities provide terrific support & resources.  My daughter's genetic quirk comes with monthly playgroups, of all things, and all the people I've stalked met in the larger special needs community have come thru this space.  What do you do if you don't write and are dealing with something rare, something that doesn't have three or four competing national organizations?

Not to suggest there aren't other fabulous community supports in this age of the internet, but we are on a well trodden path.

I had steeled myself for a barrage of special angel comments but I've seen very little smarminess.  It's light, fun, & supportive - almost like a daily play group - but one that operates in THIS world, the one with hospital stays, surgeries, and occasional gut wrenching loss.  There is a religious base (which I'm happy to ignore) and there can be some awkward, non people first terms but I'd never thought much about the language of disability either, 6 years ago.  I think there's a tendency to bristle and get cranky when we wander out into the world and find the gen pop isn't quite as involved/understanding/PC as we want them to be, but that knowledge doesn't spring organically from nothingness.  Connections and familiarity are the fastest, surest way to that understanding we crave.  People without a single tie to the disability/special needs community are signing up to run for strangers, getting to know them & their families. Running is hard and nothing kills the smell of pity faster than a blister, yet it keeps growing. Y'all know I don't do rainbows & unicorns but that does warm my frozen, cynical heart a bit.    

Weirdly, and last paragraph notwithstanding, I haven't signed up The Girl up to be matched. Partly because I run for her too, but mostly because I think she can run for herself.  Just like Jimmy Jenson.  Now if there was a group for the non-verbal…

I was matched with an adorable little boy who probably isn't old enough to appreciate my sporadic 5 milers (or my fastest ever half marathon last month - whoot!), but he likes pictures of my girl and I'm one more person in the world who cares for him.  We could all use one more person, couldn't we?

I also doubt he appreciated all my artsy outdoor shots, before it got cold and rainy and I retreated to my treadmill.  Before I found out Murphy shouldn't be running (I wonder if anyone would want to run for my dog?).  But forcing myself to look for photo opportunities during my runs, to be present, was a beautiful gift.

Thank you, Robert - IRUN4U!

Now I just need my knees to hold out.

(photo quality is a different issue)

31 for 21: 42 years.

First, I really am out of practice.  Sorry if it lands in your reader again but I had to edit my recently renewed blogging efforts - the typos were making my eyes twitch.  Also, note to self, don't try to post something from your phone in the one room in the house without wifi while dozing off between sentences.

I was trying to figure out what I was going to write about tonight when I heard this on NPR on my way home (apparently on repeat?  It's from 2012).  My facebook posts these days seem to be limited to NPR links so apologies for another one but it's not often I cry in the car.  The story is about an autistic boy who was institutionalized at age 8 and lived in the same place for 42 years - until one of his caretakers broke his neck, rendering him a quadriplegic.  No one was ever charged.  

Forty two years ago my OB would have recommended we institutionalize my daughter, too.

If she had been institutionalized, she would have never gone on a walk with her mommy.  

Or been given glasses, to see better 

Or been able to make goofy faces into the camera. 

 No one would have laughed with her.  How would she have learned to smile?  

No walks, no streams to cross, no one to help her cross them.  

 Discarded. 

There'd be no silly bouffants. 

 And no rock splashing. 

 Certainty is for fools. 

Certainty about the value of a life, 

certainty about joys to be found - 

you cannot be certain of anything sitting a sterile office. 

It may not be simple, or easy, or obvious

 But this girl...

led me beyond the expected

and I have felt the warmth and joy of a thousand suns.  

Five years ago no one suggested we do anything but take her home and love her.

Although this is not the case everywhere in the world, and although there remains much undone, I am always moved by this simple and profound gift of time and space.

An Ode to the Convention

[I wrote this for our local Down syndrome group's blog here; just re-posting for my own records. 
Carry on... :) ]

My daughter was diagnosed with Down syndrome in utero, right after they found a massive hole in her heart.  I spent the last few months of my pregnancy reading everything I could find but I was never much one for groups so I stayed quiet on the message boards, never left any comments on the blogs I stumbled across, and was still blissfully Facebook free.  I was also distracted by the fact that several months hence someone was going to slice my child’s chest open – “community” isn’t on the radar when you’re busy studying survival statistics.

I was also a little alarmed by the vast spectrum of people out there – angry, religious, atheist, grieving, perky, happy, sad, you name it.  It was overwhelming and I doubted whether a little chromosome was reason enough to wade into that mess.  It took years before I started blogging myself and then another couple before I finally conceded to the lovely monstrosity that is Facebook.  Along the way I did latch on to a few like-minded moms but I didn’t attend the NDSC convention, the mother of all groups, until last year.  And I – an admitted introvert – was sold.  Hard.  And now I want to sell you:

First, there is a ton of information.  They do an awesome job of offering something for every age range and interest – from babies, to school, to independent living.  There are talks about finances, science and research, computer apps, and pretty much anything else you’d fancy.  Even if you can’t go every year, you should go just once to listen to Dr. Skotko talk about siblings and Libby Kumin on speech.  This isn’t information you can pick up in an internet article or a textbook, this is why and how, at its best.

This year, for example, after a surprising decision to send my girl to kindergarten early, I attended a talk on inclusion by Patti McVay and it was revelatory.  I understood it to be the preferred practice, understood the theory of peer modeling, and have cheered and consoled friends as they wrangled with their schools, but it wasn’t a reality for us yet and I remained a bit fuzzy on the logistics.  I worried about bullies and my girl ending up in the corner, ignored.  But I left that workshop weeping, full of hope, and I am NOT a crier.  This alone was worth the trip.

Second, it’s euphoric.  Just imagine a weekend surrounded by people who get it.  Who won’t accidently let slip the “R” word, who intuitively understand that kids come in all packages, and who only express pity when you tell them about that crazy shuttle ride, not when chatting about your child’s latest ups and, um, downs.  Plus, you can meet your computer friends in real life, turn them real friends, and it becomes much less weird to explain your social circle to the in laws.  And did I mention I’m not a people person?  If you normally like people, it might be even better.

Third, it’s a great opportunity for the kids.  We actually left mine with the grandparents this year because the kids’ camps fill up faster than I can plan, but ignore the hypocrisy.  Yes, inclusion is awesome – the other 362 days of the year. My daughter will learn to live in, navigate, and find happiness in this world just like her typical brother.  But I’m not naive enough to think it will always be easy for her.  I want to offer my daughter a fun weekend where she can relax and compare notes with her peers, complain about her over-protective parents, and cut loose on the dance floor, free of high school prom politics.  (Did I mention there was dancing?  There’s dancing!)  There’s an entirely separate track for self advocates over 15 – a space just for my girl and her friends.

There’s also a sibling track for 6^th graders and up.  As great as my two kids are together now, and as open as we try to be about it, I’m also not so naïve as to think my son might not want to touch base with other kids who have to sit in SLP waiting rooms.  He might even want to let off a little steam about his goofy parents or atypical sister, without it turning into A Thing.

Even if classes make you yawn and your kids never complain, last year I was waiting in the lobby for my husband when I saw a teenage boy do what teenage boys do the world over – he walked past a girl dressed to the nines for the dance, did an abrupt about face, walked up and introduced himself.  My husband arrived and we left to the sound of the girl giggling.  Both had Down syndrome.  My heart melted.

I know it can be expensive.  My husband works for an airline, we fly for free, and it’s still expensive.  But after the first year I swore I’d go even if meant three days of top ramen and park benches (happily for my back, we were able to avoid that this year).  And lucky for YOU, next year’s conference is in Indianapolis, a mere 4 hour drive from St. Louis.  If the budget looks daunting, don’t despair:

1. Skip the meal plan.  We’ve never done it.  Most hotels have mini-fridges now.  Swing by a grocery store and pick up a couple staples before you check in – yogurt, cereal, PB&J, top ramen, whatever floats your boat.
2. Skip the big award dinner.  We had a pizza party in our room that night instead.  Just as awesome, no crowds, no rubbery convention chicken.  The dance after is always free and there’s no dress code.  You see everything from shorts to prom dresses.
3. You don’t HAVE to stay in the designated hotel.  If you can find a cheaper hotel nearby, book it.  Someone else will invite you to their room for pizza and nobody will notice or care where you slept.
4. If you’re still skeptical, come the first year kidless, even spouseless, to check it out before you multiply your costs by a few mouths.  You’ll get the presenter’s power points as part of your fee and can report back.  Some of the presentations are even available by video later.
5. Split a room – there are always others traveling solo.  FB is great for cost sharing hotels, cabs, etc.

Community, information, and dancing – what’s not to love?  It’s a short drive next year, and who knows?  If you come, I may even invite you over for pizza.

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.