Monday, January 30, 2012

It's 10:00. Do you know where your children are?

Headlines like that are why I avoid the local news.  

Anyway... last night I checked on my girl and found this.
Believe it or not, her room had been clean. 

She is a WILD sleeper.  We'll find her in any number of places  - in corners, in the closet, in the little toy tent you can't see in this picture, in the rocking chair she unmanned here, and often in the bin at the base of her bookcase with all her stuffed animals:

Nice.  No, we don't normally keep our child in a box.  Also, my camera battery died before I could play with the low light settings so apologies for the lousy shots.

She had her sleep study Thursday night.

This was my plan:  Unable to fold laundry or wash dishes I would curl up into one of those comfy hospital recliners and start my new book while my sweet little girl peacefully snored away nearby, monitored by the mid-west's finest medical professionals.  I even had snacks stashed away.


Believe it or not, I'm not actually on ANY medication.  The reality:  She didn't like the little electrodes and she really didn't like the glue they used in vain attempts to affix the electrodes.  There were tears and wailing.  It took her an hour and a half to fall asleep.  Then she slowly pulled off all the electrodes as she thrashed around and played with her hair in her dreams (her hair obsession is a whole 'nother post).  For some reason, unlike every other sleep study I've read about online our center didn't have caps (hairnets?).  So the tech would come back in - I don't know, every 4 minutes? - to re-affix the electrodes.  Which would wake her up.  See also, above:  LIGHT SLEEPER.  Till finally at midnight the tech came in and said that she'd pulled so many off they weren't getting any useful data and they were going to have to re-affix ALL the electrodes.  Which REALLY woke her*.  And, oh dear gawd, it took her TWO hours to fall back asleep.  There's nothing like getting annoyed with your perfectly calm and happy yet WIDE AWAKE three year while you are on camera and mic'd to really really feel like Mother of the Year.

[*Note here about the overnite tech - she hadn't liked the girls when we checked in but the tech at midnight signed beautifully, asked her to "help please" and she immediately settled down.  Ah, the power of communication.  I think I could have done a much better job walking her thru the process earlier with the girls.  Maybe attached the wires to her dolls first.  *sigh*  Am not winning any MotY awards here!] 

Finally in desperation I turned on Signing Time and fell asleep.  I think she eventually fell asleep but by 2-2:30 in the morning I was defeated.  Bested by a 3 year old.  We were there from 6:30pm-9am and they said she got about 5 hours total.  There's a very good chance we'll have to get it redone (Wave hello to Daddy, sweetheart!).

Also, in one of life's massive ironies, because she'd been home with me for a week during the Family Flu, and not in daycare, her constantly running nose had cleared up.  So there was minimal snoring which had been half the reason we were there.

One of the techs asked me how much sleep she usually gets.  HA.  I shrugged & told him she was the second child.  He laughed and said he had three of his own.

For those of you who don't know what I'm talking about:  When my son was a wee babe, and I was away all day at work, I considered it the least I could to stay with him, after bath and books, till he fell asleep.  It was our time to bond and damn the experts, what's the harm?  Well, he's six and a half now and while he doesn't come in our room every night, I still have to negotiate to leave his room after the stories are read.  Sometimes, little white lies are even told - Yes, I'll come back after I've had a glass of wine done my chores.  Hoping against all hope he'll be asleep by then.  It's really only been in the last year that he's stayed in his room all night.  And by "all night" I mean till the gloriously late hour of 4am.

Then he comes in our room and snuggles.  And by "snuggles" I mean he takes up 75% of the bed, all 6 pillows, and the king size comforter.

When my daughter was smaller, after her heart had been fixed and she'd graduated out of the bassinet and into her very own crib, behind her very own door, we made a conscious decision to NOT make the same mistake.  So she gets a bath, books, and a snuggle.  We tuck her in, arrange Mr. Lion, Mr. Tiger, Baby Doll, Dollie, and -recently- Doggie (fountain of originality around here, we are), turn on her spinning flower nightlite and we CLOSE THE EFFIN' DOOR.

That she plays quietly in there after "bedtime" is of little concern.  She's safe (though the rocking chair has been wounded) and she's learning a lesson of incalculable worth - to go to sleep by herself.  I suspect we'll have to backtrack a bit when she figures out the door handle thingy, but in the meantime there is precious, precious, precious sleep.  Without little feet kicking me in the face.

That this arrangement leaves me under equipped to answer the sleep tech's questions is, well, I'm OK with that.  We're not completely oblivious - we know it takes her a LONG time to fall asleep, and that she ends up in strange places like her toy box, and when I sneak in late at night to move her back to her bed, sometimes stars are born and die in that time between breaths, but we were kind of hoping the professionals could tell us what was going on.  You know, something more insightful than, "She's sure not sleeping much, is she?" A girl can dream.

Sunday, January 29, 2012

Sunny Days

Just a couple quick
photos from the last weekend
before the Great Flu.

SOMEBODY does not 
want a helicopter Mom. 
Climbing ladders? Check. 

Clear blue skies. Brown eyes.
Dimples to melt my stony
heart.  Just don't fall please. 

Go forth, my child, to
climb, strive, seek, and not to yield.
But first, a cuddle.

Thursday, January 26, 2012

A weakling makes trouble

Has it really been 2 weeks since I've filled your screens with joy and mirth?  Longer?  Oh, I've never done that?  Ha.  Hmmm, sorry.  Funny clown? 

[blah, blah, blah...]  Excuses for not blogging:  Other than a week of the Family Flu, I'm mostly going to blame my new 4-10 schedule, because it's really been closer to 4-12s, plus a long-assed drive home.  Taking almost a whole week off to serve ginger ale to ailing little people, only a couple weeks after taking a week off for the holidays, is neither an awesome career move, nor a path toward inner balance and harmony.

And I'm terribly behind in my blog-reading so please accept my apologies if you've missed my always insightful and amusing comments.  I still love you.  It's not you, it's me.  I know that post you wrote about that thing was brilliant.  And funny.  Oh? That post? Yes, that was heart wrenching.  I cried.  I have it flagged and starred and bookmarked to revisit but if I don't write something today Gigi will have my head, and THEN where would we be?  Headless, and unable to laugh or cry at your posts, that's where.

But while I've been offline and cuddling with little people on the couch, I have been doing quite a bit of old-fashioned reading.  I gave away almost all my books last winter, resigned to world of board books and six word sentences, but whether the kids are better able to entertain themselves or I'm just slacking in all my other duties (the latter), I'm almost half way thru this year's Christmas book stack.  And all of these books have been swirling around in my head, lending a dreamy quality to the last few weeks - or that might still be the flu talking.  I don't think I'm going to land anywhere particularly insightful, but this is what I've been reading: 

Game of Thrones, book one:  My brother promises me books II and III are in the mail.  Just a good ol'fashioned fun read with dragons and a map up front - My brother's new thing is books with maps. Seems as good a criteria as any.  Disability themes with both Tyrion Lannister, who's a delightfully snarky little person, and one of Stark's sons, who is pushed out a window and becomes paralyzed.  I'm not going to go digging through all 700 pages for the exact line, but Tyrion points out that it's a lot easier to be him since he's rich - money buys respect and protection; other families might have left him out in the cold.

Given all the cutbacks in early intervention and other state services, he's not wrong.  I just wrote a large check to our speech therapist last night.  I would've liked it to be bigger, for my daughter to see her two or three times as often.  To see the OT there too.  I'd really like to pay them to move into our guest house (along with a private chef and massuese for me) so they can see her daily, and I'd like to build a private inclusive/mainstreaming school where I can cherry pick "typical" kids who are especially kind so I don't have worry about bullying.  And I'd like a dragon out front to keep the creeps away.  *sigh*

Girl with the Dragon Tattoo series:  Also fun.  Though highly disturbing theme of abuse in various forms, particularly of those in state custody/guardianships.  I'm likely the last person in the western hemisphere to have read these so I don't think I'm giving anything away here, but I was left a little -something- at the end.  We all root for the girl and she prevails, despite clearly being autistic (or somewhere on the spectrum), because she's smart.  The bad guys assume she isn't, because of her emotional issues, she fools them because she is, and wheee, nothing else matters because look at those neurons fire.  Who's going to rally around the girl who can't hack your computer and steal a hundred million dollars?  I might be a bit biased about IQs these days.

Life as We Know It, Michael Berube:  A work of genius.  I can't believe I hadn't read this before now.  The brutal truth is that no one is ever happy to set off down this path with our children.  We find happiness along the way, see secret magical parts of the forest that ordinary people on the highway aren't privy too, but I haven't read of anyone who cracks open champagne immediately upon learning about that 47th chromosome.  And when I say this, I by no means want to trivialize anyone's journey because if you HAVE found that secret magical place in the forest it is cause for celebratory champagne, but most stories I've read, ours included, are variations of we were sad, we got over it, & look how cool our kid is!  Allowances for health concerns and writing skills.  This is SO.MUCH.MORE.

Walk on Water, Michael Ruhlman:  Close up look at pediatric heart surgery.  I was again reminded how incredibly fortunate my daughter is to have been born into a time and place that allowed her heart to be fixed and that it was found to be worth fixing.  Had she been born when I was, the hospital staff may have suggested institutionalization.  Even if (horror!) we had agreed, it wouldn't have lasted long because she would have shortly died of heart failure.  I know I've mentioned this before, but it continues to astound me.  [Without getting religious on you]  There but for the grace of god...

This book focused primarily on one doctor, whose primary focus appears to be arterial switches.  ASDs and VSDs are mentioned but not once did they mention AVSD, which is what my girl had.  That particular diagnosis is strongly, though not solely, associated with Down syndrome.  The author mentions Ds twice.  Once simply in passing - as in, patient A (w/Ds) was in Room 1, patient B (whose parents he actually talked to) was getting fascinating operation done in Room 2.  The second time was a quote from the surgeon, originally from New Zealand, who went to work in Melbourne, "it was considered silly to operate on a Down's, but the parents loved these kids." (sic)

How novel.

The book was written in 2003.  The doctor was in Melbourne apparently in the 1980s.  For all my marveling at our good fortune, that's not too long ago.  And for my family, who may have missed all the hullabaloo online, variations of this continue today.  Amelia has a rare genetic condition and needs a kidney transplant.  Apparently not one from the national pool, where it could go to the next nuclear physicist instead, but one donated by her own family, who might see their little girl as precious and worth saving, despite the unlikelyhood she'll later embezzle several hundred million dollars or build a better bomb.  In fairness, there are probably other factors that MAY make her ineligible for any transplant but that's not what the mom heard.  And in the book, Walk on Water, they covered one otherwise "normal" teenager who needed a heart transplant but was first forced to take an IQ test because, as his own heart was failing, he'd suffered several stokes which might have affected his future bomb building abilities.  Not in the 80s, just 10 years ago.

I get that organs are painfully rare and every day people die waiting for one.  There needs to be some sort of selection criteria, or else po' people are going to start waking up in tubs of ice in dingy hotels missing important internal bits.  Or not waking up at all, if the wealthy need hearts.  But in the 80s, in Melbourne, some doctors didn't even feel it was worth a few hours of their time to close up VSDs in kids with Ds.  The same country that recently nearly refused a doctor permanent residency because his son had Ds.  I don't mean to single out Australia; Denmark has its own eugenics program running.  And this fair country produces people who use the term "non-person humans".  It's exausting, this.

Now that I'm working 4-10s, I have Wednesdays off and we're going to start visiting the library.  Last night we picked up Charlotte's Web and I started reading it to my son during my girl's speech therapy.  At least one other special needs mom was within hearing distance. 
Well, [said Fern's mom] one of the pigs is a runt.  It's very small and weak, and it will never amount to anything. So you father has decided to do away with it.
 Holy crap, y'all.  I nearly started sobbing in the waiting room.

Thursday, January 12, 2012

The Good, The Bad, & The Ugly: My Morning

The Ugly:
Two, no THREE hour drive!
Sticky suffocating snow - 
All one inch of it. 

The Bad:
Schools're closed. Horror
for working moms.  Kids learn to
engineer snow balls.

The Good:
Parked on the highway.
What to do?  Pretty newly
painted nails, haikus

Tuesday, January 10, 2012

Ears and Adenoids and ENTS, oh my!

Medical stuff - I took Monday off to take my daughter to a new ENT, since I never reached a happy place with the last guy. Other than the little corner of hell known as the pediatric specialist's waiting room at 8am, it went swimmingly.  The first guy wanted to operate immediately, because all kids with Down syndrome end up getting tubes (and adenoidectomies).  Nevermind MY daughter's stunning lack of ear infections.  He shrugged off my query for the ABR (auditory brainstem response), stating it should only be done after the tubes were in (so that they drain first, which admittedly makes sense IF the fluid was the problem).  Granted, she was getting over one of her long string of colds that day, so it's quite possible she did have fluid in her ear but no one else had ever seen any before (triggering some unfair thoughts about my beloved pediatrician's abilities) so I wasn't sure what to think (though I very much appreciated y'alls comments).  I don't expect all our MDs to be warm and fuzzy but basically I didn't like the guy that much and if we're going to get tubes, why not just drop in this other office over here first and see if there's somebody else I'd rather pay? 

Besides, the new ENT is at Hospital #2 which has better landscaping and parking than Hospital#1.  You can see I'm a fully informed & empowered patient's mommy. 

Hospital #2 is also the same place they re-read the AAI xray from Hospital#1.  And it (#1) is where her first opthamologist was - she was all of 6 or 7 months old when she saw him, i.e. with a newly fixed heart, and it was the middle of winter, i.e. flu & pneumonia season.  The guy sneezed into his hands and then reached for her.  Time slowed down like in a horror movie - nnnoooooo!  We didn't go back.  Damn #1 & their proximity.   Hospital #2 is sooo far away but this last month just sealed the deal and I'm always game for lovely morning drives. 

Anyway, the new folks actually tested her hearing.  Such shocking thoroughness!  They tried a behavioral hearing test first (the VRA on the link.  By the way, kudos to whoever dreamed up those light boxes - pure, inspired genius) and then a tympanometry.

We had inconsistent results- they'd expect the tympanogram to be flat if she had fluid in her ears and/or because of those little ear canals all kids with Ds have.  Except the new ENT thought her ear canals were lovely, as in not small, and she saw NO fluid.  So she wasn't sure why the tympanogram was flat.  She had to look as I held down my wailing, thrashing daughter so she hedged her answer a bit but no glaringly obvious wells of, um, yuckiness.

And although she technically passed her VRA (lookit me with all the new acronyms!), the audiologist thought the results were unclear since she was only "fairly" cooperative.  Turns out "fair" really means "wild child - good luck with THAT one".

So we're scheduling an ABR.  Which is what I wanted 'lo these many moons ago.  While the girl's sedated, if our new ENT sees fluid, she'll put in tubes, but not before evaluating what the heck is going on in there.  AND she wants the results of next week's sleep study, so she can decide if an adenoidectomy is appropriate.  Wow!  A thoughtful rational approach to an individual patient!  You'd think we're in the 21st Century or something.


Daily Boulder:
The teacher's aide in my son's class who not only had encouraged a new friendship between my son and a very nice new kid (he came over to play during Christmas break), she also promised to talk to someone about the mean kid the kid in aftercare who's still learning how to play nicely with others, and maybe encourage some different and better friendships since the nice new kid gets picked up right after school because his mommy loves him and isn't around to play with in aftercare.

Monday, January 9, 2012

HUnt the Good Stuff

[aka The Pursuit of Happiness in the 21st Century  (i.e. with shorter words)]

I've been quietly mocking my little happiness/small stone project since my goal isn't so much the writing as it is to remind myself of all the little things that might otherwise get lost in the sweeping wind that is Me, Getting Through the Day.  I have feared this will all lean perilously close and topple into some new age Feel the Crystal affirmations, which makes me itchy, so in my head I'm just calling it "taking notes".  Also because I have no comfort level discussing depression cloudy days.  Turns out our federal government, in all its infinite wisdom, has already taken the beach - I heard this on my way into work on Sunday.  Dude, if it works for the war vets, then I'm going mom-up and go for it.  (Totally ignoring the FUBAR & SNAFU jokes.  Also, did they know the acronym for this little experiment was going to be "HUGS"?  Did that give no one pause?  Though if it's not going to bother the chiseled combat soldier, then who am I to snicker?  Hug away!   


Saturday:   Movie night with the boy - hot chocolate, popcorn, AND a milkshake. He gave up half way thru his hot cocoa, right after Clark Griswold got the lights to work.

Sunday:  The frost on my car when I headed into work for a few hours. A reminder that winter is coming (I just finished Game of Thrones last night at midnight) and I should probably spend my afternoon today cleaning the garage so both cars can fit inside.  But I also finished Game of Thrones last night at midnight and should probably go take a nap.

Monday:  The look on my girl's face as the nurse left the exam room, freeing the spinning stool, as she realized I wasn't going to stop her.  Sly glee.

Saturday, January 7, 2012

Boulder-dash Daily

With 2 votes in favor, my pet project of 2012 is now officially "Boulder-dash Daily".  Let the hilarity commence.
Heading straight into the rising morning sun, almost no traffic. Warm coffee, a clear blue sky, and even the picturesque line of birds flying by.  Radio disconcertingly played, in order:  Rick Springfield, Katie Perry, and then Creed.  I didn't change the station because I was driving too fast and wondered what the next jarring selection would be (Beastie Boys.  They went from Creed to the Beastie Boys. wow?)
I know not everyone loves that Creed song - and I just pulled up the youtube video to link here and it was AWFUL (really, really horrific) -  but when I first learned my daughter had an extra chromosome I had this image of the girl she was to be standing in the sun and it always reminds me of that moment.  It was such a clear picture I've long suspected my subconscious pulled it from somewhere but the only scene that came to mind was the light beam melting the nazis in Indiana Jones.  And that CLEARLY wasn't the feeling elicited.  Hell, maybe the song inspired the vision?  It was a little bit of magic but now I'm concerned, first, about my prosaic pedestrian subconcious and, second, the only thing I'm going think of when I hear that damn song henceforth is the lead singer's hairy chest. 
This would be much better video.  If it were, you know, a video.  

Thursday, January 5, 2012

Not another haiku. Not really.

This morning, my sleepy boy requested a cuddle before I left.
Enviable eyelashes, last year's too small christmas jammies, growing boys who still love their mommies, and stinky morning breath.
A good start to the day.


I need a name for my little project since I'm likely veer wildly away from small stones theme, but I'm unwilling to drop the concept altogether: 
Rocks in [at?] glass houses (this blog obviously being the glass house)
Stony stars (vague Thousand Points of Light reference. Hah.)
Stoned (no)
Purple pebbles (as in Alexander and the Wind Up Mouse)
Pebbled paths (as in ‘the road less traveled’)
Or, going back to the ships:  Rocky seas, Stone Ships, stony ocean…
annnddd I’m not even making sense anymore.
 I actually like "Bedrock" since I grew up in earthquake country and it’s always a comfort to find a bit of solid earth -  strong foundations, returning to the basics, blah, blah - but it's not exactly poetic.  Purple pebbles might be better but it seems a bit too cute.  I can do cheese - slathery dripping melted cheese (to wit: this entire project) but not so much The Cute.  Thoughts & suggestions welcome.

Edited to add: 
We might have a winner - Boulder-dash Daily (?)
See:  Balderdash.  Making light of the nonsense that is my "daily affirmation" (ick!) project.

Wednesday, January 4, 2012


The background:  My dad has a thing for Artic explorers and my two brothers have been named in honor of certain outings.  This is the Resolute:

She became icebound and was abandoned in 1854 but the ice eventually released her and she drifted off into the open ocean where she was found, returned to England, then later salvaged, turned into a desk, presented by the Queen of England to US President Rutherford Hayes, and ultimately played a not unimportant role in a Nicholas Cage movie.  [A potentially ignoble end, depending on how you feel about Mr. Cage.]

More background:  Office holiday lunch of 25+ assigned to one severely besieged waiter.  He was so overwhelmed at one point he actually hit his own head - because he forgot someone's tartar sauce (despite 4 requests, but not that I was counting).  I, for one, was a little uncomfortable and no one lingered over coffee and dessert because it seemed a very real possibility he'd start crying if we asked for more cream. 

A few days later I stayed up till 1am making cookies for all eight of my daughter's teachers and therapists because at 3 in the afternoon, cookies had seemed like a cheaper more thoughtful gift than yet another Starbucks gift card.  I had the TV on and ended up watching Black Swan.  I decided I should probably do something about my stress levels before I end up hitting myself in the head or hallucinating.  On the bright side I decided it's not that bad because I haven't started hallucinating ...yet (though, speaking of New Year's resolutions, it's funny how blurry those numbers on my scale are). 

Then I had an absolutely lovely week off wherein I read BOOKS.  Real books, with pages and chapters and multi-syllabic words.  Oh! The luxury!  And I did not clean the garage or the basement, or frame the dozens of photos I've been stockpiling for years, or cook and freeze meals for my return to the real word, much less do laundry... and it was marvelous. 

Then my girlfriend reminded me of a funny story involving a friend of hers whose house was in such disarray there was literally grass (the stuff of lawns, not of hippies) growing in her bathroom. 

So.  I have decided that I am doing the very best that I can at work and at home and I can plow through the ice without getting stuck or whining about the enormity of it all or worrying about what isn't getting done.  I will be fully engaged and present where I am, and be undaunted by the rest.  Because we're a long way off from crying over tartar sauce or having to mow the bathroom floor.  And more importantly, because I don't want to end up drifting aimlessly out to sea and miss it all.  And by "all" I mean the two very special little people that are my heart & soul and the reason there seems to be 3 loads of laundry a day.

I read about Ms. Elizabeth's small stones and while brevity has never been my strong suit (no kidding, you say!), this seems like an excellent avenue to document the little joys that make this damn expedition worthwhile.  Except this is going to be my little happiness project, rather than beautiful prose, and I might just throw a picture in there instead.  Or a bad haiku, like tonight.  Because my other option was the photo-a-day project that one of my very favorite people on the internet spawned, but I might do that next year instead when I have a nicer camera and it's no longer what all the cool kids are doing. 

Home late.  Sleepy eyes,
damp hair, footie PJs.  Smell
baby soap.  Hum, rock.

Sunday, January 1, 2012

Goodbye, Hello

Wiped out.  A year, gone.
Here's to fresh starts, clean slates, naps,
and black patent shoes.

 She and her brother both sleep exactly like their daddy - one arm up.  Perhaps 2012 will bring a napping montage.