Wednesday, February 29, 2012

Annoyingly long post about books - and other stuff.

I recently finished both the Boy in the Moon and Schuyler's Monster.  I'd be a terrible book reviewer because with only a couple exceptions I didn't take notes or mark pages, preferring instead to just revel in the writing and the stories, both of which were remarkable and thankfully free of saccharine.  Both kids have incredibly rare syndromes and half the stories were simply finding a diagnosis - at one point Ian Brown said those with his son's condition weren't "large and politically powerful like that of Down syndrome".  Which I found curious considering all the second glances and occasional whiffs of pity we get, but on the other hand, the cardiologist we met with when I was still pregnant, immediately after learning my daughter's heart was missing critical internal bits, was downright cheerful.  He said, "We've completely revamped the way 'these kids' are taught and she'll be more productive than half the people in Missouri."  I don't remember if this meeting was after we'd already received our amnio results or if it was still just likely she had Ds, given the nature of her heart defect.  I know being "productive" may not be everyone's benchmark of choice but at the time I laughed and was grateful for the hope and feathers.  [And I don't think this was a commentary on Missourians specifically, though I've been known to mock their driving habits].  I'm even more grateful for that conversation in retrospect, now that I've heard about some less than cheerful [read: nightmarishly Kafkaesque] doctors' meetings.  Point being, both  her heart defect and her genetics were known quantities, addressable (if not "fixable"), and there were People out there already who Knew Things.  We were not charting unknown oceans alone - and when I was (finally) ready, the internet, buddy walks, and blogs were there for me.  

After these books I again felt we are lurking in that murky space between the special needs & "typical" worlds, yet belong to neither - some delays and medical bumps but nothing unmanageable or particularly novel.  While I loved the book, I wouldn't be able to sit down over coffee to compare IEP notes with Mr. Brown.  Yet my daughter's Down syndrome isn't exactly the American Dream - it's "bad enough", in fact, that an entire industry has sprung up in an effort to give parents the ability to opt out.  It's the first & most obvious thing pregnant moms worry about and because of it, and losing Brennan, I try to spare expectant moms my presence at baby showers.  I imagine my appearance is sort of like the Ghost of Things Gone Wrong and during those parties I haven't managed to avoid, I try not to touch anything or talk too much, so as to not draw attention to myself.  I also find all that naive cheerfulness dangerous -  teasing fate - like the happy scene in the movies, right before the semi crushes the family's sedan.  Not that I'm superstitious or anything.  And yet, weirdly, I don't feel like we are the family squashed by the semi.  We're relatively happy, time & money shortages asides. 

Ian Brown also wrote that he uses the word retarded...
Sometimes I'll use it at a party and I can sense the person I am speaking to rearing back, however imperceptibly, at the sudden presence of what is supposed to be an unusable word; I can see him note the usage, and I can see him decide not to react, because he knows I have a disabled son:  he must think, well, if anyone can use it, he can use it. 
I think he was being generous.  Or maybe Canadians are just more polite that those of us further south.  It might warrant a half-hearted apology after the fact if I shoot someone a look, but it doesn't seem to be as verboten as some other terms I can think of, especially knowing the number of times I've heard it from people who know my family.  To wit:  I went to girls night about a day after finishing Boy in the Moon.  One of my neighbors, in describing some gaffe, said she was socially retarded.  Worse, it was THAT neighbor - the one who thought she was going to be joining this community of ours - the one I mentioned in passing once in my whole long story that I'll link here because I think there are a couple new readers, but it's L.O.N.G.  so don't say I didn't warn you.  [She doesn't read this blog and I'm going out on a limb here to trust my SILs won't inconveniently remind her about it this week].  Anyway, I was close enough to hear her, not in the right spot for her to see my face.  I froze for a second and didn't say anything.  Partly because last time this happened there was, um, a scene (let no one doubt my ability to fly off the handle) and also because I'd just read the paragraph above and for space of one baby's heartbeat I thought maybe I was being hyper sensitive.  

I wasn't.  Robert Rummel-Hudson used "retarded" in his book too, though I think he also wrote one of the best pieces on the word over here.  It's a goddamn shitty thing to say.  There is not a single context in which it doesn't immediately and specifically reference people like my daughter.  And there is never ever ever a situation in which it is even remotely acceptable to reference my THREE YEAR OLD in whatever asshattery you're muttering about.  That said, I'm not trying to demonize my neighbor.  Our kids play together and she doesn't complain about my dogs' barking, or the inadvertently converted prairie that was once my back lawn.  She brought us dinner once, after a hospital stay.  She'd also probably cry if I said anything.   …but I've also thrown up a non-neighborly extra tall fence in my head.  

But this isn't about that word.  Or my reaction that night.  I think it's about community & isolation - my real one and my cozy little world online.  I'm not sure which is which anymore.  Because I was having a good time with the neighbors and then, after, I wasn't.  So I went home and got online where the people I read know it's a goddamn shitty thing to say.  The internet may be fraught with bullies and land mines but I've found a quiet little corner, with some other parents I adore, and have seen no trolls (so far). While our daughters might have different issues (ignoring the non-verbal bit right now…  Avoidance!  Try it sometime!), at one point in the book Schuyler's dad joked about buying an island for his family.  Which I've also fantasized about (who hasn't?)… but cutting off all outside contact might not be super healthy for the kids.  Killing off mommy's monthly night out isn't good for her either.  Cutting off every person who's ever been an asshat isn't realistic.  Because who hasn't been, at some point?  My children -both of my children- will venture out into the world one day, asshats and all.  It's not just that it'd be foolish to think I can protect them forever (I'm not sure how I feel about L'Arche, which Ian Brown looked into, but that's a post for another day), it's that I would be selling my girl short, worse than any name spewing jerk.  The scene Robert described at the mall, when his daughter got up in the mean girl's face and roared was awesome.  I've no doubt my daughter will roar as well.  He also wrote his daughter "still had a right to move through the world on her own terms".  True - If only I could maybe do a little recon for her and clear the path.  Throw myself on a land mine or something. 

Monday, February 27, 2012

Checking in.

I have a  gloomy half-written post in the works but couldn't finish it on Saturday because both of my children were being impossibly whiny and needy - needing lunch, needing new diapers, needing hugs.... you know, frivolous stuff.  Then I was going to finish it Sunday but we went to the botanical gardens with some friends and it is logistically impossible to be Grim when it's 67 degrees in February in Flyover Country.  There was hand holding, hedge-maze running, "accidental" flower picking, and generous dessert sharing.  There was, sadly, no photo taking, despite my new camera batteries, because my memory card was left safe 'n sound at home in my computer.  It's always something, right?

I also think there's been a lot of medical, errandy, & Grim hereabouts lately, so how about a fun quick update on my girl instead?

Reading:  No, not yet.  But she has a distinct list of favorites and knows the books well enough to anticipate the dramatic high points - when the bear sneezes in Bear Snores On, when the hippo finally joins in in But Not The Hippotamous, or when Mr. Brown makes that knock-knock sound.   When she wakes up in the morning she'll either knock on the inside of her door (funny, and clearly resourceful, but also a little disturbing in that confined child, may I please be let out way, like we've left her in there too long), or she'll sit in her chair and read aloud.  She's technically babbling, not reading, and I know I've been peering over that non-verbal cliff for a while, but she's babbling a LOT, in conversational tones, in what every speech pathologist we've met calls "pre-verbalization".  When she's babbling-while-reading there isn't a shred of doubt she's telling herself a story - she laughs, she acts surprised, she signs a bit.  In my less grim moments I'm reassured by this, and assume she'll be chatting with us (in English) in no time.  Exemplar videos were attempted but failed to meet quality control.

Potty Training:  No, not yet, but an A+ for effort.  She knows what to do while sitting there and WILL try, often with success if mommy & daddy are paying attention to her, um, cues and get her there in time.  She's even told us a couple times she's had to go - with me usually, because there's candy involved (disturbingly, the sign for "candy" and "potty" are developing a close relationship).  And once she actually grabbed Matt's hand and walked him over to the toilet (I'm going to pretend that wasn't because he missed her signing).  But... if we're not paying attention or she's busy or the moon is in the 3rd quarter, not the 4th, she has no qualms about not using the potty.  So not there yet but we're on the right path which is a fine & dandy place to be.

Pretend Play:  If I were a real blogger I'd post a video here too, of her tucking her dolls and lions and tigers in at night, or trying to feed her doll raisins or offering it her straw, or taking her doll to the potty, or trying to line them all up on the couch so they can watch TV with her.  You'll just have to take my word for it.  I made the mistake bringing THREE dolls downstairs over the weekend for her to play with but as every parent knows, 2 can play and 4 can play, but 3 always means someone gets their feelings hurt.  She, of course, intuitively understands this and became ENORMOUSLY frustrated when all 3 of her dolls wouldn't fit in the front (in the front! not the back!) of the little grocery cart she has.  I bent limbs, squished dolly ribs, counted one-two-three heads for her and was rewarded with a belly laugh, and then she marched off, content with an equitable world. 

Oh, how I long for her to keep that feeling forever.

Tuesday, February 21, 2012

Cousin's Birthday, Party Dress, and Absolutely Never

Pretty velvet dress,
pink satin buttons. Dancing
in the driveway.  Love.

Running from mommy.
Not so fast!  Scraped knees follow.  
Learning to let go.

Belying the myth.
No worries, hugs & kisses 
next (after photo!). 

Cousin's new go-kart
NEVER. No helmut's enough. 
 No!  *sigh*  ok, ONCE.
[We have a new fancy computer without any photo tweaking programs on it, so no fancy drawn-in arrows, but his cousin's new go-kart is parked on the sidewalk in the background.  He was SO excited I let him ride on it (yes, with a helmut) but they were going Too Fast!  Head trauma!  Broken clavicles!  I'm well past the risk adverse stage and into full fledged muttering/hyperventilating paranoia.  Though I did already warn him he's not getting one.  Best crush those dreams early.]

Sunday, February 19, 2012


I have 4-5 things to write about and not one, not two, but THREE photos posts - but am trying to keep these a readable length (Ha! When has that ever happened?) so here's my attempt at short & sweet:

Remember 1-2-3-4-5-6-7-8-when was it?  Oh yes, NINE months ago when my sister got married?  Well she FINALLY (*cough*  Not that she's not busy or anything.  Did you know she's just one short thesis away from being insufferable an expert on why things fall down during earthquakes?) ...anyway, she finally sent me a cd with some of the professional photographer's shots.  I hadn't taken any cute ones of my girl on the big day & I know y'all have been anxiously biding your time waiting for these.  I KNOW I HAVE.

Side note - because you knew I couldn't not ramble:  Matt & my son had missed their flight that weekend, they couldn't get on another to make it to the wedding on time and so declared it a fun boys' weekend at home, leaving me alone with a grumpy yet active 2 1/2 year old in small hotel room in a strange town.  I was stressed out already about other stuff, emotional about my baby sister getting married, and my adorable charming loving daughter was being a little pill.  Don't get me wrong - I had a great time and wrangled sitters for two evenings, but over the last 9 months I'd mostly forgotten about my tyrannical toddler, the superfluous tears, and the missed pedicure and rafting trip.  Until I was futzing around on the computer, going thru the photos she sent, ....and started snapping at Matt as he was making us dinner. 

Wow...  Congratulations!  I've just won the longest length of time to hold a grudge subconsciously!  Yay, me!

Anyway, this is me, my girl, & some of the family, 9 months (and 10#) ago.  Please ignore the slightly bloodshot eyes.
I'm the one holding the kid.  The only kid.  That was fun! 
In case it is in any way unclear, I'm one of the two matching goofy grins.
Genetics ARE a powerful thing.
This weirdly doesn't look like her but she WAS trying awfully hard to steal the show.
Trying and succeeding.  
Gratuitous shot - one of the few of me I don't want to immediately burn.
I'm not actually that tall - just taller than the rest of 'em.
Not one of my daughter's better photos though.
If only I could fotoshop!
Center of attention.  Every one looks doting but I just look grim.  Nice mom.
But to be fair, she'd just tried to torch the place by toppling the candelabra.
I was wondering if my insurance would cover both Church + Conciliatory Gifts for the Angry Bride.
My brother was on his way up the aisle to sweep her off to the Fun! And Soundproofed!  Toyroom!
But then again, the bride might not have noticed the burning church
(Oh, the metaphoric possibilities!)
She was pretty happy that day.
Congratulations, you two! 

Friday, February 17, 2012

Since I was grumpy Monday

Here are three things from my week at the office:

~~~  A note I read:
[Patient] took an intense scrap-booking class this Saturday which irritated the Rt shoulder. 

Now I admit I have an envious love/hate relationship with craftiness but.... no.

~~~ The office might move closer to my house. Not just closer, but a life-changing mere 15 miles away.  It's almost too much to hope for. Cross your fingers!

~~~ Aaaanndd:
Happy photo post filled with cuteness forthcoming, but my photos got wonked in the draft and I have to get back to my home computer to fix.  Happy Friday! 

Monday, February 13, 2012

Boulder-dash Monday

Foul, foot stomping Monday morning mood.  Laundry strewn about like an art installation, dry cleaning still here, not off being cleaned, not even neatly heaped in the corner any longer, have to wear the black slacks again, scrambling to find a clean uniform shirt for the boy (and failing).  Trying to remember what the hell it was I did all weekend (and failing).  Light snow outside, meaning more muddy yard, muddy dogs by tonight, traffic.  Doesn’t matter because the floors weren’t cleaned anyway.  But my boy’s big brown eyes, sad, after yelling at him to COME EAT BREAKFAST NOW AND WHY AREN’T YOU WEARING ANY SHOES?  And my girl dancing and spinning under the kitchen lights, watching her shadow on the dirty kitchen floor, and laughing.  A deep breath, and I join her.  Clean-ish shirt procured for the boy, and a hug.  French braid for the girl.  It will all be ok.  They will remember the dancing and spinning, maybe.  I hope. 

Saturday, February 11, 2012

Delays and obfuscations

It looks like my girl's ABR- ear exam- maybe tubes- echo***- adenoidectomy has to be rescheduled.  It was set for the 14th.  Yes, Valentine's Day, I know.  So much for that surprise romantic getaway to Paris - though I was hoping to find lots & lots of chocolate at the nurse's station.  But they didn't leave enough time for the adenoids because they
    A/didn't believe me when I said she had sleep apnea, 
    B/till they got her sleep study results, or 
    C/they forgot.  

On the one hand, I'm pleased because they'd scheduled her at 5:30pm.  5:30!  That's when most people are going home.  I didn't want her ENT or anesthesiologist to be yawning and wondering how pissed off their paramour was because they were missing a romantic dinner.  Or worried that all the florists were going to be closed by the time they were done, so let's hurry up, and... oops!

We don't want any oops-es.  

Of course I trust all her her medical peeps are consummate professionals and can handle a little tube insertion blindfolded but she was also supposed to be NPO after 8am.  Translation:  nil per os.  Nothing by mouth after 8am.  Do these people not have children?  Have YOU ever not fed a 3 year old for 9 1/2 hours?  Heh.  Let's just say that terrified me I didn't think the day was going to be awesome quality bonding time.  

On the other hand this is just more delay -  more days, more weeks where she might not be hearing us, where the little communication highways in her head aren't being built.  Yeesh.  Not that I'm anxious or anything.  

     ***Way, way, wayyyy back at her 3 year check up, otherwise known as The Great Referring, when we set out to get a sleep study, hearing test, new orthotic inserts, AAI X-rays, & to find a good pediatric dentist, I thought she might have to be sedated for a few items as she can, occasionally, like any other 3 year old, resist being prodded and poked.  I thought the initial visits were pro forma and all her peeps would have to reconvene at the hospital on some magical date in which all 27 of them were free.  Happily, the X-rays and DDS visits were easy.  It was only at her cardiology appointment, where she's been a thousand times, that wasn't even on my Things To Do While Sedated radar, that she decided Enough Was Enough.  NO MORE.  Can't say I blame the kid but annual echo cardiograms make mommy sleep better.


Boulder-dash Dailies - 
Friday:  My son, waking up in our bed (of course), before even lifting his head off the pillow says, "You know what I'm MOST excited about today?"  We should all wake up thusly.

Saturday:  My girl is walking around the house in my heels as I write this.  Tragically, I have not bought new camera batteries yet.  She has mastered The Heel.  I didn't till I was well into in my 20s.  Atta girl.  

Thursday, February 9, 2012


[Noonish:  edited to fix horrifying grammatical error. Yikes!]

~~~ We got the results of my girl's sleep study:  4.5 out of 5.  Which is apparently "significant," but not "severe."  The adenoids are nonetheless coming out.  I have to wonder what, say, a 4.72 would be - serious?  Does "serious" sound better or worse than "significant"?

They pointed out she never really got into a deep sleep (I KNOW.  I WAS THERE.  ALSO NOT SLEEPING) and if she did, they'd expect to see the sleep apnea to worsen.  At one point her blood oxygen got down to 89.  Last time it got down below 90, the pediatrician offered an ambulance to get us to the hospital for RSV.  Fabulous.

~~~ I've never joined F*cebook.  Every time I considered it, there'd be some spat of news about obnoxious privacy lapses.  Linkedin already creeps me out because they know my email address at work and track the other people who are already on there who've emailed me and then it sends me invites (hey! you might know *random plaintiff counsel* who emailed you that work thing?).  At least that seems to be how it works.  I assume *random plaintiff counsel* isn't actively trying to befriend me. 

My excuse was that I couldn't (nor shouldn't) access FB at work and my limited online time should be spent updating this here blog or reading yours.  Also because I enjoy complete sentences & there are no issues of my family bumping up against work people or my inlaws on my wall.  Not that I have any idea how it works, but it seems poised for confrontational worlds colliding. 

Except the people that pay me have bowed to the 21st century and are letting us on.  So am reconsidering. Again.  I know I'm the LAST person in the world not enrolled (enlisted?  entrapped?) so I don't expect anyone to tell me not to do it but still...  Google already knows so so so very much about me - who I email, what (& who!) I google, where I travel (Google maps!  Necessary since I've gotten lost in my own subdivision), turning all that over to a second company, especially a second company that only reluctantly lets you keep your status private, seems iffy.  Or I might be completely paranoid.  If I start lining the basement with lead and buying flats of canned goods, call someone.

~~~ We need to switch speech therapists.  There were scheduling issues and she was going to try to work something out but I haven't heard from her in 2 weeks.  That sucks. 

~~~ I have mixed feelings about the upcoming ABR (sedated hearing test).  One the one hand, if her non-verbal-ness is because of her hearing, and we can fix it?  Awesome.  Getting her to wear hearing aids?  BAHAHAHAHA.  Also?  It strikes me a bit as just ONE MORE THING.  One more set of specialists.  One more set of follows ups every year. One more possession to keep track of (we just went 16 rounds over a library book the school sent home with my girl.  Matt swore we never got it.  I found it months later under a seat in his car).

But if it's not hearing loss, then the not-talking is developmental and... that just sucks too.  She communicates, through signs (lots of signs!), pointing, and pushing/pulling you over to where she wants you but has also taken to yelling if something is not as she pleases.  And that is not good for mommy's equilibrium.  Girl has a set of lungs on her and she's loud.  It also makes me a little sad, that she's so frustrated with her limited communication she's taken to yelling.

~~~ I've dropped off my boulder-dash daily but here are two from this weekend:  Finally breaking out the "build a pulley/crane" set from Christmas and putting it together for with my son.  Made myself put down my book and actually BE there with him.  Well worth the sore fingers from those obnoxious tiny pieces.  Especially since he's still running all over the house looking for things to lift with his new crane. 

Two:  Because I care nothing for my son's nutritional needs, we did a fast food run.  He asked how french fries were made.  After a few more bites he thoughtfully agreed that he could almost taste the potatoes in them.

Tuesday, February 7, 2012

Fun Run at the NDSC Conference!

Last April my brother talked me into doing a half marathon with him.  I though that was an insane but needed a project so started running. I started by doing a mile.  One mile.  I ended up running three half-marathons last year, in June, September, and October.  I’m not fast, finish line videos prove I’m not graceful (my brother sent me a youtube video of a lumbering bear once, for comparison. Ah, family), and I’ve found that “runner’s high” to be annoyingly elusive.  Sometimes I have petulant little arguments with myself when debating if I should stop eating, get off the comfy couch, & put on my running shoes.  But at the end of the run, any run, I do feel terribly self-satisfied.  Smug even.  HA!  LOOK WHAT I JUST DID.  Take that couch-girl! 

At every race I saw other folks running as a team for various good causes, in matching T-shirts.  There was a girl with CP who ran a 5K with her dad and a guy in a wheelchair at the September race.  I thought it would exceedingly cool if *I* had a T-shirt extolling my favorite cause.  And if my knees hold out for a few more years, I look forward to running with my girl.  No limits.  With all the fervor of a new convert, I even emailed some of you, thinking we could find a race to run together, in fancy matching T-shirts, while in DC at the NDSC convention.  But then I got distracted by a sciatica-thingy, Thanksgiving, and back to back to back Winter Festivities.  Couch girl was winning.  And while I'm not quite back down to one mile, it's close.

But Carrie, who I met in September [which she still refers to as an "awful" race but she doesn’t seem to be holding it against me], sent me a fun bit of news:  Research Down Syndrome (RDS) now has a running program, including fun runs.  Perfect!  Motivation AND a good cause!  And what location would better to host a fun run then at the convention of thousands of families they're trying to help?

So I emailed both RDS and the NDSC convention, had a couple of lovely conversations with the powers that be, and we have a green light!  Details are still being hashed out but we're thinking Saturday morning, 7/21/12.  However, RDS needs to gauge the interest level and that's where YOU guys come in.  They're more than happy to sell a couple tech shirts so a few people can go for a short, color-coordinated jog, but if more than the 3 people I'm going to bully into signing up want to do this, then they need a permit, more T-shirts (we had a long conversation about cotton Ts versus tech shirts.  We're good.), cones, balloons, etc. 

I'm not going to extoll the benefits of running - if you run this one mile and sally forth from there, awesome.  If it's not your thing but you come walk with us, just to enjoy the people and morning, and to support the kids, more's the better.  This is just going to be FUN outing, probably from the hotel to the zoo through the park.  It shouldn't be too hot first thing in the morning and what better way to justify that extra muffin at breakfast then knowing you've already stretched your legs? 
Stock photo.  I don't know these people but don't they look HAPPY? 
Bet they had pancakes AND an extra muffin at breakfast.

So if you want to snag a shirt and hang with the cool kids, drop a line to and let them know this was the BEST idea you've ever heard of and can't wait to Race for the Extraordinary.  If you know people who know people, or if you're on FB or the message boards, that would be super fabulous too (since I'm too shy & uncool to join either).  The more runners, the more balloons, and the more muffins at breakfast.  No limits.