Sunday, November 10, 2013

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)

Monday, November 4, 2013

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.  



Little girl on a big street:

Monday, October 28, 2013

31 for 21: 1 down, 52ish more to go (Mo'School)

I just added up all the IEP and parent-teacher conferences in our future between both kids, assuming we never get around to adopting and the kids don't venture too far off the rails:  52.

Kids, man, they're such a time suck. 
I jest!

If you want the background on the To Kindy or Not To Kindy decision, it's here.

I went to The Girl's first official kindy parent-teacher conference Thursday night.  There was no drama, no conflict, no good narrative tension… not that I'm complaining, but it makes for rough writing.

The SpEd/SLP were running a few minutes late and her 'formal' teacher seemed a little lost at first, but soon warmed up and had nothing but good things to say.  The Girl is (mostly) sitting nicely during circle time, there are a couple kids in the class who ask about her and want to sit by her (my heart!), and she looked shocked when I asked if my sweet little angel* was walloping people, as she'd done last year.

[Not a critical factor but I was also happy to hear she isn't intentionally dumping her food/drink at lunch - something she delights in a home.  *phew*  Also?  THAT is why peer modeling works, my friends.]

We only had 20 minutes with the primary so the SpEd, SLP & I soon moved into the teacher's lounge where we went over her IEP goals (she has a re-evaluation coming up) and just chatted about how kindy is going.  She's picked up the classroom routines easily, they confirmed she knows all her letters, upper & lower case, and they were delighted to find that she loves-loves-loves to read, doing my bookish heart proud.  She's busy exploring her AAC and even answering questions on it (!).   She is, however, exhausted by the end of the day, and especially by the end of the week - but they they anticipated this going in so no surprise. [And, really, who isn't done by Friday?]

They seemed appropriately uninterested in the IEP numbers and percentages, stressing again that this year is about communication.  They talked about how the para hangs back during activities so she isn't being smothered or singled out (!).   They love her social stories & have shared them with the class.  And not only did they agree to a communication book (the emails have been a wee bit thin lately), they're going to put it into Proloquo2go so that my daughter can tell me about her day.  That is brilliant.

They told a couple funny stories about her - which completely escape me now - but concluded by commenting on what a bright child she was.

Oh, you guys.  This is the dream.

Yes, I am a sucker for compliments about my children but it wasn't just that - they recognized her strengths, they intuitively understood things other parents have had to battle over, and they were completely invested in their role in my daughter's success.  They just oozed a lovely, quiet competence.

I read somewhere that older SpEd teachers are the worst at pushing inclusion because they tend to be territorial of "their kids".  That doesn't to be the case here but she IS spending most of her day in SpEd, by design.  I know anything could happen over the next few years - we could end up battling over the amount of time in gen ed when we re-do "traditional" kindy next year, we could argue over the number & timing of push ins vs pull outs.  We could lose the pro-inclusion principal.  The SpEd teacher from heaven could quit or move.  I could get hit by a semi.  The Girl could…. well, anything could happen.  But what a gift this year is.

P.S.  Also, only a few kindy art projects seem to have received excessive assistance.  I think she did the eyes on this guy - at least she recognized it and grabbed it from my hand - That's MY spider, mom!

Thursday, October 24, 2013

31 for 21: The 24th

It's the 24th today which means my grand 31 for 21 blogging effort is huddled in a corner, shaking, cold, and wet.

But look at my pretty button!

Grab This Button

The Girl's first parent teacher conference is tonight which should give me LOTS to write about, but in the meantime, here are a couple things that never made their way onto Facebook:

~  I was doing errands over the weekend after a particularly awful week at work, and between stops listened to Radiolab's bit about probiotics and stress.  This isn't new news but the swimming rats with "behavioral despair" nicely embodied my week.  Instead of medicinal yogurt, however, I went home and made a huge plate of french fries.  Those worked just fine too.

~  I remain, however, highly concerned about my state of mind.  REALLY WORRIED.  To wit:  I went to the grocery store, picked up various foodstuffs but forgot to buy both wine AND coffee.  What the hell?  This is akin to forgetting to breath.  I resisted the urge to call 911 but clearly need to take action before it's too late.  Neurologist?  Personal yogi?  Personal shopper?  Double order of the medicinal fries?

~  Have I mentioned The Girl has completely mastered the TV upstairs?  Not that I encourage it but she likes to get up at 5am and I'm in no position to argue.  As long as there are no resulting ER visits, whatever happens before mommy is caffeinated is free time.

I put The Girl to bed the other night, went downstairs, then heard the TV upstairs turn back on.  I headed back up but she must have heard the gate open because the TV was off again and she was hiding.  I marched her back to her room but she stopped me at the threshold and shut the door in my face.  Hard.  Who needs verbal skills when you can slam doors?  Gawd, mom, you never let me do anything!  My 5 year old, going on 15.  Awesome.

~  I don't think we need to worry about excessive compliance in this one:

Tuesday, October 15, 2013

31 for 21: 14 years

One of the girls in my office is engaged, and at one of those insufferable office showers someone else, 7 years in, started waxing poetic about what it took to keep a relationship going - communication, listening, how not to fight... blah, blah, blah. 

Nobody asked me, though I realized later with a mix of horror (are we that old?) and pride that I'd been married longer than anyone else in the room, but MY tip would have been to simply resist the occasional homicidal urges.  If you are very lucky, the rest will sort itself out. 

Here's to 14 years of laughter, tears, & only occasional body dump scouting!
I couldn't find a recent picture of us together so here's a look at what we did together.  *smirk*

Sunday, October 13, 2013

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 muchexcept 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.

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?

Tuesday, October 8, 2013

31 for 21: 10 Loaves, 1 Moose, No fish.

This isn't part two yet - this is a cheater because it's already 10:30 and I've been trying to catch up with YOUR posts.  What I wouldn't do to not need sleep!

I've been doing short little social stories for The Girl at school, both so she can show off the signs she knows & - maybe, hopefully, ideally - some of the kids can get used to the AAC concept.  This weekend was... Well, I'll get there tomorrow.  But she helped me make bread so we worked in help, mommy, cook, bread, want, dog, Moose (the photo bombing dog), eggs (she wanted to tweak the recipe), & a few others.  

Almost as important as fostering my child's vocabulary, communication, and social skills, is the fact that after creating 10 or so lovely decorative stones, I FINALLY made some awesome sourdough bread.  Watch out Boudin!  

Monday, October 7, 2013

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?

Sunday, October 6, 2013

31 for 21: Double Trouble.

Family looks trump
chromosomes. Nothing as sweet
as this matching pair.

Saturday, October 5, 2013

31 for 21: 6 shots

... Proving my girl will climb ANY obstacle, literal & otherwise.  
And she certainly won't let anything like a silly girl dress stop her!

Thursday, October 3, 2013

31 for 21: 2p,1h


You were thinking the
SAME thing?! Yup, I AM pretty
awesome!  And modest!

Wednesday, October 2, 2013

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.  


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.