Monday, December 31, 2012


I haven't disappeared, promise!  Since last post - oh, jeez, has it really been since November? - in no particular order, Matt & I went to Ireland for a gorgeous wedding, it took me 20 hours to get back home, I was seriously jet-legged forever, I had to do penance at work for having the unmitigated gall to take time off, Matt got sick, work was intense, The Boy got sick, I got sick, work was intense, The Girl caught a cold, I was still sick... and work has been, a-hem, intense.  Throw in a little SAD, complicated by The News, a lovely case of writers block, a not so nice case of SAHM jealousy (More time! I need more time!), and here we are.  At least I'm posting something this month, so December's archives won't be empty, but my something will be in the form of grainy digital images.
Merry belated Christmas!  As special days go, it was exceptionally low key this year, for the reasons above.  Matt usually puts enough lights up to drain the power grid, but this year went bare bones, just enough to fend off allegations of atheism.  And no one felt like eating (or cooking) on Christmas day so the kids nibbled on some sweet potato and we called it good.  But we were together, Santa came, and there was ribbon.

And there were cookies for breakfast.  

 She was All About the presents this year.  

 The Boy's Christmas jammies... from maybe 4 years ago?  
Laundry was something of a challenge for us this month.  

 These dimples are all I need for Christmas, ever.

Matt went low key on the lights, but he did all the communicating 
with Santa this year so Mommy was 98% Thrilled.

Least Exciting Present, Ever.  
AKA, the magic of photography.  Don't they both look fascinated?
Mommy was being practical & suggested some new kiddie sheets to round things out under the tree. You know - planes, trucks, dogs, Spongebob, something fun.
Santa pick blue stripes.  

Santa found a drum set on sale & ignored mommy's reservations. 
Santa may lost his flippin' MIND. 
He will shortly lose his hearing.

Ho Ho Ho! 

Wednesday, November 14, 2012

(29/31) One Breezy Day

Am I still hanging onto my 31 for 21 count? Meh - why not? I have the next two days off so will hopefully be able to finish strong with an actual post, including (hopefully!) another travel story, but in the meantime, here are some pix from our walk this weekend. Note the sign for "grass"!

Thursday, November 8, 2012

(28/31) - It takes 4 to lift.

Following yesterday's post, I am very pleased to announce that my daughter's day care did not request we retrieve her early.  I believe we can call this the beginning of the Thankful posts, because that was a HUGE relief.  
Not unrelated:  You know you're a mommy blogger when 17 people across the country know what's going on with your kid's diaper. 

I'm going to try going to bed at a decent hour for once so here are a couple of previously unpublished, very, very blurry pictures taken in bad light.  I know you'll love them as much as I do.
Ms. RK invited us to this cheer slash tumbling open house event last month.  Her daughters are both involved and I'll admit I'm tempted.  The kids loved running around on the equipment.  The benefits of community, balance, strength, etcetera, etcetera aside, there are also some very cute outfits involved. 
In addition to the instructor, a bunch of teenagers show up, unpaid and on their own time, to assist during class.  I have an innate fear of cheerleader types, no doubt due to some suppressed junior high trauma, but these kids make my stony, cynical heart flutter. 

Plus, how cool is this?  
The lift, obviously, not the giant crayon she wouldn't let go of.  

Definitely tempting.

Wednesday, November 7, 2012

(27/31) - Two for one.

Last fall The Girl went thru a 6-ish week long period of "GI upset".  Daycare called about every other day for us to come rescue her and we went thru testing, negotiating, and then outright begging for them to knock that off because taking 1.5 months off work is a really poor career move.

All the tests were negative and her doctor just said it can sometimes take six weeks to resolve.  SIX WEEKS.  Much to our dismay he was right about the time frame - it was Not Fun.

We seem to be on repeat.  It started sometime before Halloween and I got a call yesterday to pick her up (thankfully not till 5).  I'm still on the 4x10 plan, so am home with her today, but I'm really really, nervous about this next month.  Matt's taking off on Saturday for a week-long wedding shindig and I'm suppose to join him next Thursday.  There are already scheduling shenanigans and adding this to the stew will not make anything easier.

[Destination wedding!  I had to renew my passport!  ...So naturally the washing machine just threw a ball bearing, the toaster is only toasting one side, and I have to take my computer in because it's moving slower than the continents.  And now we have GI issues.  Murphy's law reigns supreme!]

She won't nap in her own room anymore but the couch is fair game.
She's been wearing her Halloween wings nearly non-stop this past week.... 
So many "angel" jokes, so little space.


Totally unrelated:

Funny things my son said about the election, below.  Posted here because FB has seen enough politics - not necessarily mine, except for my one outburst yesterday, but I think everyone is tired.  I realize yesterday's post was more anti-GOP than pro-Dem, and I didn't cover the economy, or the other 17 issues near & dear to my heart, but I'm happier having chucked my two pennies into the pool.  To all my friends who voted for the other guy - I still love you.
(Yes, even YOU!)

~  When explaining health insurance to him, he kept calling it life insurance.
Which it is, really.

~  I explained how having insurance makes it easier to go to the doctor if you're sick, even when you don't have any money.
"If you're sick or...  if you get bitten by a cobra!"
Yes, even when you are bitten by a cobra (?!).

~  This morning, while I was flipping between news stations:
"It's almost like the country has two presidents."
Hmmm.  I hope not, buddy.

Tuesday, November 6, 2012

(26/31) - The 57th Term.

If all goes according to plan, I will wake up early tomorrow and go vote.

Or, more likely, I'll sleep until the last possible minute, slink into my chair at work a few minutes late, then go vote during an extra long lunch.

Does anyone care how I'm going to vote?  Probably not, beyond the briefest But can we still be friends? glance.  I've been on Facebook now for about 9 months and there is no lack of certainty there, and certainly none on the news channels.  No one is waiting for me to wade into the murky waters and enlighten them.

So this is, for all intents and purposes, a writing exercise.  I'm not going to link to anything because if you agree with me, it's likely you already read it and/or don't need it explained.  If you don't agree, you probably stopped reading a paragraph ago.

Here's the thing:  I work in a traditionally conservative industry for corporate America, right on the edge of the bible belt.  I favor button down shirts and dark suits.  I loathe "business casual".  I send my son to Catholic school.  My daughter was pre-natally diagnosed with Down syndrome and I did not terminate the pregnancy.  Bet you think you know where this is going, don't you?

You're wrong.

I believe in a strong military.  I believe in tort reform, tax reform, and business friendly laws.  I think it's asinine our border is as porous as it is.  Not because I resent anyone trying to escape the cartels and corruption, but because I don't want it to be easy for my son to score blow on a street corner in 10 years.  I don't actually believe the government can solve all our problems.  I agree, especially after spending almost 40 minutes on a federal spreadsheet this afternoon, that government can be unwieldy and ridiculous.  It is entirely possible I may be (*gasp!*) a moderate.

However, I do not believe a corporation, given the choice between paying millions to limit their  emissions or paying nothing to freely dump waste in some unregulated Ayn Rand corpor-topia, will choose the greener path.  I'll choose the EPA and FDA, corrupt and inefficient as they may be, over Love Canal and thalidomide.  Everyday.

I believe in clean air, clean water, and national parks unmarred by oil drills.  We can debate the merits and cost of any particular environmental law but I'd find it a lot easier to listen to you if I knew the first words weren't automatically going to be "job killing regulations".

I would find it easier buy the glories of a "limited government" if you didn't want to stick an ultrasound wand up my ladybits.

I also might believe you wanted to "preserve individual liberty" if you spent less time worrying about what John and Jack were doing in their bedroom.

I actually find it abhorrent that people who trumpet family values would bar a committed couple from forming a legal union, from forming a family.   I find it reprehensible that you would prefer a parentless child remain in foster care instead of allowing John & Jack adopt.  I fail to see how this weakens the family structure -   John's & Jack's relationship has about as much bearing on the state of my marriage as Mitt's & Ann's does.  Is God fallible?  Did he make someone gay?  If the source of your objection is biblical, I'm going to argue your refusal to allow legal access to hospital rooms for a gay couple is unkind and spiteful.  What would Jesus do?  

I find it puzzling that a party as focused as it is on abortion, doesn't believe insurance companies need to cover my little white pills (though his little blue pills are fine) and doesn't believe SexEd should be discussed in educational settings.  We aren't going to provide you any education or means by which to prevent pregnancy, but if you're stupid enough to have sex anyway, you damn well will carry that baby to term.  I find it puzzling that a party touting itself as "pro-life" assumes all those un-aborted babies are going to end up in stable, upper income homes - homes that have no need for Head Start or free clinics or subsidized day care while mom finishes school or works at her minimum wage job.  But they WILL hand out partial vouchers for private school! then all the smarter, richer kids around you will vanish because your dumb slut of a mother can't afford the book fees.

Just so we're all clear, I think abortion is a tragedy.  The closest I'll ever get to feeling religious is when I contemplate two microscopic cells joining and forming an entirely new sentient being.  Life is a miracle.  But not every woman is financially, emotionally, or physically able to bring a baby into this world and how dare anyone tell her what she must do with her own self.  I am and will always be pro-choice.  I find it downright hypocritical that the party that touts itself as pro-life believes once born, those sentient beings must make their own way in the world, unencumbered by intrusive health care, financial aid, or any other social safety net.  Advocacy for the fragile and weak seems to stop once you hit room air.

I find it downright depressing that your party believed it was acceptable for millions of Americans to live without health insurance.  That it was better to use healthcare reform as a political cudgel and bemoan the loss of "freedom" in the hope of winning tomorrow's election.  Freedom from what?  Freedom from the fear your new un-aborted baby could end up in the NICU for six months, exhausting their lifetime coverage cap, and forcing a family into bankruptcy?  Freedom from bumping your head in a car accident, getting a $800 ambulance ride, a $4000 ER visit, and a $3000 MRI, ruining both your credit and your children's Christmas?

I am tired of people earning $150k/year with employer provided coverage, wondering why "those people" just don't do the responsible thing and buy health insurance.  With cash.  On the open market.  With that one thing the doctor noticed that one time burned for all eternity into their medical records:  a pre-existing condition.

I am tired of the extended family lamenting the crushing monstrosity of Obama care while cooing over my otherwise uninsurable daughter.  Would they have brought brownies to a bake sale to cover her fourth visit with the anesthesiologist?  How about an extra batch of cookies to cover the surgeon?

Both my paternal great grandfathers were doctors in the same small Nebraska town.  100 years ago it might have been acceptable for a patient to pay off their $5 office visit with a share of the potato crop but office visits aren't $5 anymore and my doctors can easily get their potatoes at Schnucks.

[I am, however, deeply disappointed the message was so poorly delivered.  My people are poor salesmen.]

I find it distasteful when the constitution, a document that originally allowed only white men to vote, is held to be inviolate and inflexible.  I find it equally distasteful, that a mere 50 years after federal troops were required to squelch a state's "right" to bar a black man from going to college, the states are held to be vessels of light and freedom, whilst the federal government is oppressive and overreaching.  The only overreaching I felt is when my state representative said some rape is legitimate.

I am tired of the unapologetically biased largest cable news outlet's vitriol and their snarky comments about "main stream media".   If you are the biggest, you are the main stream.  I am tired of an eavesdropping little old Australian's nasty divisive role in this country.  I am tired of the willful blindness to the trainwreck this party's last leader left behind.  Tired of the false outrage over  Seal Team 6 leaks and Benghazi (anyone remember Valerie Plame or....I dunno, 9/11?)

I am tired of the party that seems to be made up only of millionaires from the Ivy Leagues and people who believe the earth is 9000 years old.  Neither reflect my reality.  I am tired of the party that thinks science and nature are for chumps, that dismisses rape, and that calls women sluts.  I'm tired of a party that refuses to compromise with the other 47% and whose primary economic reform is to cut taxes for the very, very wealthy.  No thank you.

Sunday, November 4, 2012

(25/31) The Thirty-First

I'm afraid I fell off the blogging boat a bit.  This is weak, but here's my pitch:  Though my daughter might not get there "on time", she will eventually and we will celebrate all accomplishments free of schedules & calendars.  Which is why I have not abandoned my 31 for 21 quest.

Trekking on. 

Ha!  Or I could pretend I'm just easing into the NoBloNo-thing which also involves daily writing but I'm not, I'm just busy and tired.  I think there's also a daily thankful blogging theme this month but one project at a time.  I'm in a bit of a mood (if you can't tell) and I'm thankful for running water and our health and our jobs seems forced.

Thankful for family & cousins.
I had a hard time getting excited about Halloween this year.  The Boy wanted to be a ghost for at least a month, until he ended up in a box store with Matt and was swayed by the cheap Thor costume.  He was still adorable, naturally, but he was out the door with his cousins before I got any photos.  This is from my MIL.

Thor, and his super-hero cousins.
I was also cheap and repurposed The Girl's birthday tutu, adding wings, and some really awesome antennae.  She understood it this year, stuck out her basket and signed "Thank you" for the candy but she's had some tummy trouble lately and didn't last too long.


I don't have too much else right now.  This is just me easing back into the blogosphere.

Monday, October 29, 2012

24/31 - 85 Pounds

Ball obsessed, counter
trolling, neighbors terrorized,
gorgeous Flying dog.

Sunday, October 28, 2012

23/31 - Flight 2 of 3, Eavesdropping

On flight #2/3 yesterday, after a little nap to recover from my 4am wake up call, I started eavesdropping on the woman in front me as she told Random Guy all about her adventures with genetic counseling, searching for various specialists, and her child's eventual diagnosis with.... Wait!  What?  Darn chatty pilots.  Much as I love to talk special needs shop, my aversion to conversing with strangers won out so I didn't tap mom on the shoulder and demand to know which nurse at Children's she'd been complaining about.  Epitome of social refinement, I am.  What I gathered between revving jets and cockpit announcements was that her child was eventually diagnosed with something rare.

Also that the geneticist had apparently tried to reassure them (pre-natally?) by saying, "Worst case scenario it's Down syndrome."

Worst case?  WORST CASE?!  I have no idea what this child ended up with and/or what set of data they were looking at but methinks the geneticist needs to get out more.

I have read some horrific "finding out" stories this month, courtesy of 31 for 21.  Medical professionals who don't even bother to ask if, just when they should schedule a termination.  Doctors who deliver the news like a death sentence, then flee the room.  I've long believed my relatively easy adjustment was a twisted side effect of losing Brennan.  Heart surgery?  Scary.  Cognitive delays?  Not ideal.  But, hey, the kid's alive, so we can deal.

But in retrospect, and partially prompted by a conversation on facebo0k, I have to give a nod to a few people.  At the fourth (!) ultrasound appointment, when the tech took a long, long time and then went to fetch the doctor because The Girl's heart was missing its center, they marched me right upstairs to the cardiologist's office.  I vaguely remember Matt being there so I'm no longer sure if this was that  visit, when they told me about the exceptionally high correlation between AVSD and Down syndrome or a second prenatal visit after we'd confirmed her chromosomal count via amino.  I know Matt came that first day, but not if he arrived in time to meet the doctor.  I do remember the cardiologist saying, relaxed and upbeat, "They've completely revamped they way they teach these kids and she'll be more productive than half the people out there."

I don't remember having any conversations about it with my OB (I do like him but my pregnancy was mostly managed by the perinatal center), but at the first visit after our news became official, the OB nurse ran and grabbed a Christmas card from one of their patients - a little girl and her brother with Down syndrome, snuggling.  She said, "I only know one other family... but aren't they beautiful?"

She is reason I send Christmas cards to all our medical providers.

I'm also going to give a little reluctant nod to all the other people who told me what sweet, loving children "they" are.  It rankles me now as yet another stereotype, but at the time I'll admit a drew a little comfort from sweet & loving.  That didn't sound too bad, y'know?

You know what sounds bad?  Worst case.  You know what might color a mom's reaction to her newly diagnosed baby?  Worst case.  I'm not one of those mythical creatures who believe babies with a third 21st chromosome are angels sent by God - that little bit of extra does bring some extra wrinkles to life.  But worst case is not this girl, climbing all over the fort, requesting her favorite "bear book", and pouting tonight because Mommy was gone for 4 days.  Worst case is calling funeral homes to see if they can pick your baby up from the hospital morgue.  Worst case is a medical professional not knowing what.the.fuck. she is talking about.

Saturday, October 27, 2012

22/31- 33,000 Feet

I know how much y'all look forward to my travel disasters but I was dangerously close to not having anything to report this trip.  I made my flight out (barely - last person on the plane WIN!).  No excessively intoxicated seat mates, no forgotten items, pleasant airlines peeps...  And then the consummate professionals I was going to entrust my life to, as we hurtled thru the air at 33,000 feet, decided there were other, more enticing Friday night options & didn't show up for work.  I least I think that's what happened.  There was a plane but no one to fly it.  There might be a sad story, flu, car wreck - who knows?  Maybe I should be grateful they decided they weren't up to the task?  All I know is that I spent another night in Texas.  It was not fun.  I was grumpy and stayed offline.  Your welcome.  I'm hopefully (!) on my way back home now but then I'm getting right onto another plane (hopefully?) to go see my brother & my sister in law and I will break my apparently not inviolate no baby shower rule because she's expecting and I couldn't be more excited.  Though this put a kink in my shopping plans so... Yeah.  This has nothing to do with anything except I miss my kids.  And Matt.

Wednesday, October 24, 2012

21/31 - 15 miles

Today was my last 70 mile roundtrip commute.  I have to fly to Texas tomorrow, where I hope I won't be shot by the local plaintiff tort mafia, and I fly back Friday.  On Monday I will drive exactly 15 miles to my new office.  Google tells me it will take 21 minutes.  There's a 13 mile route but it's along one of those 2 lane 50mph country highways where you hit head on and die if the guy in the oncoming car sneezes.  I spent two hours in the car today.  That's a 40 minute different, twice.  This is HUGE, y'all.  HUGE.

I will miss my white board though. 
From a long ago birthday lunch. 

Tuesday, October 23, 2012

20/31 - 90 Minutes.

On Saturday, before Matt & I went out for fancy pizza to celebrate our anniversary and before The Girl got sick, we stopped by the local Ds picnic.  We'd actually intended on attending, but one of Matt's people called in sick (wth with all the germs?  It's like flu season is starting or something!) so he had to go into work for a bit Saturday morning.  The kids and I hung out, nothing very exciting, but they were going to be up late with their cousins & we were going to be up late on date night, so I announced early naptime.  

However neither one of these kids actually nap anymore, so I may have just been aiming for 30 minutes of quiet to get showered and dressed in peace, but turns out *I* needed a nap.  I stretched out "for just a minute" and was OUT.  I can almost never sleep past 7 and can never, ever, ever sleep during the day.  Not even if I've been up all night & Matt takes the kids out.  But I was out cold for at least 90 minutes, till the phone rang at noon.  Right when the picnic was starting.  Awesome.  

[The Boy was perfectly happy with his unrestricted video game time & The Girl merrily blanketed her carpet with every single piece of clothing she owns.  No children were endangered in the making of this farce.]

Matt got home just as we were scrambling around finding shoes so ended up joining us.  Which worked out well because he was able to fill the bone dry gas tank as I ran into that finest of delicatessens, the U-Gas.  Cooking is sadly not one my many talents, so I won't pretend I was going to bring some Pinterest inspired hand-dipped delicacy, but I was planning to swing by a store with real food for something slightly more upscale than the monster sized bags of potato & nacho chips I ended up bringing.  But who doesn't love chips, right?
Yes, the family was all dressed in Cardinals red.  Chheeezzzee!  
No, I don't want to talk about it.  

I didn't get to see my friend but for a second, was my usual shy and awkward self around everyone else, but I did get a yummy cheeseburger out of the deal, and the kids got to play for a bit.  Usual weekend fare hereabouts. 

19/31 - Five Whoots!

Darn it!  I fell behind in my 31/31 quest.  Rambly nonsensical post to follow:

  • I jinxed us hard by writing The Girl isn't sickly.  We went out to celebrate our 13 year anniversary on Saturday with some friends, picked up the kids from my awesome SIL and heard a little crou...  never mind, I'm sure it's just the night air. 
  • She woke up two hours later crying with a full blown croupy cough. Crap!  
  • Sunday I spent alternatively holding her or leaving the room to escape the incessant teeth grinding and inconsolable weepiness.  Matt took The Boy out on errands and then went to work.  Chicken.  
  • Matt arranged to stay home Monday and... she was dancing in the living room.  To his credit, he did not actually say I don't know why you were so stressed out, but I know he was thinking it.  Hrrumph! 
  • Monday night she woke up again at 11, crying and with another fever.  Stinker. 
  • Matt didn't comb her hair all day and she had white girl dreadlocks like Mel in Braveheart.
  • I ended up combing them out at midnight because first, I was horrified & they were only going to get worse, but also because if we did end up having to take her to the hospital I didn't want them to call social services.  It was BAD  (her hair - the cough was equivocal).  
  • Matt & I split CoughWatch today but now I think I'm catching something too - a little clammy & short of breath on & off, though I made into work for my conference calls.  And I pulled something in my left shoulder, probably holding The Girl all day Sunday.  You know what else includes clamminess, shortness of breath, & left arm pain?  Yeah, that.  I had a running internal conversation with myself about whether I really wanted to spend $50 at urgent care for someone to tell me I pulled something and am probably getting a cold and not the other thing, but ended up feeling better so managed to avoid being ridiculous.  Whoot!  
  • Things I got done today:  
    • One scheduled call with a vendor, 30 minutes late, girl howling in the background.
    • One call to the school, an hour after it began, to tell them she was still sick, girl loudly laughing in the background. 
    • RSVP'd for my SIL's shower which I should have done 2 weeks ago. 
    • Remembered I still don't have a hotel reservation for my biz trip to TX on Thursday.
    • Failed to actually make said reservation. 
    • Re-washed the same load of towels I first washed on xxxxx.  PLACED INTO DRYER.  Whoot!  
    • Failed to find the little slip of paper with the colossally inconvenient unilaterally scheduled parent-teacher conference time for The Girl's school.  Too embarrassed to email the teacher since she also recently reminded me I had forgotten to email Transport one day to cancel her bus, and I forgot to return a permission form in the 18 allotted hours.  Passed the task onto Matt.  Whoot! 
    • Made it into work on time for my other calls.  Whoot!  
    • Received an email from the girl's daycare scheduling their parent-teacher conference, that ended with "Thanks for being awesome". 
    • I'm choosing to believe that was not all sarcastic.  Right?  So that get's a Whoot! too.  

Thursday, October 18, 2012

18/31 - 12 hours work today.  Not including lunch.  Don't be too horrified, I left at 4 on Monday and was home yesterday.  A girl's got to do what a girl's got to do.

However you therefore get another haiku:
Two kids, two dogs, Matt
Three Two-One, 5-7-5
Life, by the numbers.

My brother sent this to me from random unknown internet source.  If it's yours, lemme know. 

Wednesday, October 17, 2012

17/31 - One flower, Five leaves.

Beauty in small un-
even containers.  Of this
I know.  Life, unboxed.

16/31 - 8643 times, Part II

Part I is here.  Or a whopping two days ago if you want to use that little 'older' button.

Part I also took a long detour down the memory lane of prior procedures.  Good times.  Anywhoo.... one fine September morning we visited the ENT who pronounced her tubes glorious and we got an old fashioned hearing test which my daughter rocked.  Then we went down to Radiology where my suddenly very grown up girl sat calmly, one leg crossed, flipping thru a magazine.

Well, she did for about 10 minutes or so.  Then we played peek-a-boo.

Children with Down syndrome are at higher risk for AtlantoAxial Instability, or AAI.  There are links here and here that explain it but in short, the ligaments holding the cervical vertebrae in place can be too loose, increasing the risk that those same vertebrae could smoosh her spinal cord.  Smooshy hugs are good.  Smooshed spinal cords are bad.  Just in case that was unclear to anyone.

There's apparently a little bit of controversy about the necessity of screening since AAI is fairly rare, but my pediatrician is wonderful, I'm of the test for it school, since we are the medical 1%-ers (sadly not the fiscal ones), and I don't like surprises.

When done, it's usually around age 3.  We had it done then too but there was this thing that the radiologist wasn't sure about.  So ensued a fiasco getting the films copied and off to Children's for a second reading (I got a very cool look at her insides though).  Children's thought The Girl's neck was more or less fine ("grossly normal" in medi-speak, which never fails to crack me up), but they did not have kind words about the quality of the films or the one missing angle that someone forgot to shoot, and recommended the films be re-done.

Which is has taken me 9 months to do.  I am an awesome parent.  But I was reassured by "grossly normal" and, as I mentioned in Part I, running up to Children's Hospital is no small task.  We've been there since, of course, but the timing never worked out (and/or we'd forget.  Like I said, awesome parenting).  Also, The Girl's activity level hardly suggests neck trouble.

But we finally got the films re-shot, went off for our picnic and playtime, where she climbed 10' into the air, then we landed in the pediatrician's office that afternoon.  The films had already been read and the report faxed over, because Children's Hospital is amazing.

You know when positive findings aren't actually positive?  They thought the gap in her neck was over the clinically critical 5mm threshold.  I nearly hyperventilated in the ped's office.  She'd just been climbing!  She could have fallen!  You know the experts you never want to need?  Oncologists, Tropical disease experts... neurosurgeons.  We now have our very own neurosurgeon.  Yeah us.

In that moment, and on the drive home, I will tell you I was in a very unhappy place.  I know it was not cancer, not fatal, not the end of the world.  I know this.  But I know something of spinal fusions (work, not personally) and they are a really big frikkin' deal, both long and short term.  What's more, I understood that children with fusions get halos for 6 months.  How in the effing hell are we going to manage that?  It's not like we can send her to daycare in a halo.  And did I mention what a little monkey she is?  She climbs everything.  The chances of her not dislodging all that cervical hardware and paralyzing herself were non-existant.

There was also that sickly falling feeling.  All of my major life events have struck without warning - like sniper shots on the highway.  Losing Brennan within sight of his due date to a nigh unheard of cord accident.  The Girl's diagnosis coming after a negative quad screen and three (THREE!) clean Level II fancy high risk ultrasounds.  I'm not exactly naive.  I am paid professionally to contemplate things gone wrong & assign monetary value to tragedy.  I take precautions.  Read up on risks.  But holy cripes, I still get knocked down.  Her neck had been (mostly) cleared! 

It took two weeks to get in to see the neurosurgeon.  Two weeks and twenty minutes - there is a three floor difference between neurology and neurosurgery.  *Ahem*  But he remeasured the films and decided the gap was a completely safe 4.5mm.  I KNOW, RIGHT?  So much adrenaline and anxiety spilled for...  nothing.  Well, spilled for 0.5mm.  Which is tiny!  I felt the solid ground returning under my feet.  I chuckled at my own over-reaction.

Except he was still talking, "But I'm glad you came in today.  Do you see this area right here?  C2-C3?".

Why yes, Doctor, I do see that huge gap and completely crooked spot on my daughter's spine.  The spot that hadn't been mentioned in the initial radiology report.  How very observant you are.  

Whoosh!  There went the floor again.

He said he was going to dig up the first set of films and have someone else look at all of them.  We might need a MRI.  I said I would have no idea if The Girl was experiencing symptoms of spinal cord compression.  She'll sign boo-boo if she scrapes something, but neither of us know the signs for "Mommy, my legs are tingling and I can't feel my pinkie finger."

This was on a Friday.  He said he'd call on Monday.  We left and I immediately called her heart surgeon because I'd also told the neuro I didn't think she could get a MRI because of the wires holding her chest together.  Things you never wanted to do:  Call the heart surgeon to see if the neurosurgeon can proceed.  Turns out?  The wires are titanium and titanium is MRI compatible.

As completely ridiculous as it sounds, when the cardiac nurse called to tell me this, that one little detail just broke me.  Tears & sniffles at my desk.  It was probably just stress &/or relief that something went right but how very, very thoughtful of them.  What a lovely bit of foresight and planning.  If the medical community can get that right, then we will be OK.

The neuro's nurse ended up calling Tuesday morning:  pseudo-subluxation at C2-3.  Which is apparently quite common.  No MRI.  Just repeat films next year.  *Phew!*

I know in Part 1 I tried to stress how generally healthy my girl is.  I'd hate for an expectant mom to read this and think we spend all our spare time in the hospital.  I also know this was the most anti-climatic post in the history of the internet.  She's fine!  I don't know if my reaction is normal - fusions ARE a big deal, if I'm veering off into tinfoil hat paranoia, or if this is a sign of some post-traumatic schtick that I have to go thru every time I have to make a follow up phone call.  We have not quite reached 8643 follow up phones calls, but I'm hoping I'll be all better by then.  Good times, indeed.

Relax, mom. Have a cookie.

Monday, October 15, 2012

15/31 - 13 years

Thirteen years ago
I married a man, better
and worse, heartbreak, love.

October 15th is also, coincidently, National Pregnancy and Infant Loss day.  If you scroll about half way down the saddest list that ever was, you'll see Brennan's name, submitted in pre-blog days.  It surprises me every year but it's also oddly fitting.  Not to suggest our entire marriage is anchored to this one sad event, but when you leap into a happy relationship, in beautiful sunny San Diego, with time, money, and thinner thighs all on your side, can you really know what will happen later under pressure?  Can you be sure, really really sure, your significant other won't crack and run when the sky turns black and you can't swim for all the tears?  We did not necessarily survive with any dignity, but the world kept on spinning, the sun rose, and we kept waking up next to each other.  Eventually we laughed again, together.  Some breaks really do heal stronger.  I love you, Matt - Happy Anniversary.

Now please get your nose fixed so you stop snoring.

14/31 - 8643 times, Part I

We had a little bit of an adventure the last few weeks.  At the end of September I pulled off one of those mythical scheduling coups:  ENT in the morning, repeat neck X-rays while we were at Children's, then The Girl's 4 year check up in the afternoon.  We even had enough time for a picnic at the playground and a nap between appointments.  It was brilliant except I burned an insane amount of gas driving around while she napped, trying unsuccessfully to find a drive thru coffee place -  both my fancy new smart phone and the great American Starbucks saturation plan were miserable failures.

We live in the sticks and it's an hour drive into town so these appointments are at a minimum a half day off work.  Of course I work about 2 exits up from Children's and driving into work, back to get the kid in question, back into town, and then home again is a special kind of hell to be avoided at all costs, so I usually end up taking the whole day off.  I joke a lot about our phalanx of specialists but I'd hate to give anyone the impression The Girl is a sickly creature.  She is most decidedly not.  She gets a couple extra things checked each year around this time and has had a couple little things fixed.  Well, a couple little things and her heart, which is a critical organ for most people & thus kind of a big deal, but rest were minor outpatient procedures.

Although someone needs to please remind me of this non-chalant attitude next time we go to Childrens, because in the days leading up to these "minor outpatient procedures" I spiral into a dark place obsessing about all the things that can go wrong when you have a tube down your throat and federally controlled substances being pumped into your veins.

For the record, The Girl has had her eyes fixed twice and an ABR/ear tubes in/adenoids removed once.  Only one set of adenoids to remove, thank goodness.  She's roughly had about one surgery/year.

Funny story about the last dealio with the ENT:  after we were checked in, hungry and grouchy because she couldn't eat breakfast, I pushed her in her little car about 8643 times around the loop of the same day surgery unit.  As we got closer to her scheduled time and people started to gather in her room, the nurse manager waved us on for a few more loops.  She said she recognized us and knew we were old pros so wasn't going to make us wait in the room.

I did actually recognize her, but not a chance in hell she recognized us from the previous year.  Not when she has at least (?) 30 rooms on that floor turning over 2-3x/day filled with little kids getting similar procedures, assuredly some of them with Ds too?  I figured she'd looked thru the The Girl's chart, saw we were repeat customers, and was being nice but it was not in my life plan to be on a first name basis with the nurse manager of the surgical ward at Children's Hospital.  [That or she had us mixed up with some other little girl with Ds but let's not go there].
I also just remembered that I never gave a good post-op summary of that last procedure.  I mentioned via email the ABR confirmed her hearing was good, but I never talked about miracle of the adenoidectomy.  She started going to daycare when she was 2 and her nose... Oh!  Her poor little nose had green gunk in it for the next 18 months.  Every now and then it would get better & we'd think her previously sheltered immune system had finally caught up with the pestilence that is community care, only for it to slime up again a few days later.  It was Not Pleasant.  Turns out the adenoids were little viral/bacterial petri dishes and within days of their demise, and henceforth ever after, her nose has been as clean as a Disney restroom.  Had I known that was going to happen I would have taken them out myself.

Does anyone get the feeling I'm avoiding the topic at hand?  I might be.  But because this post is so long already & it's already 11:30...  I hate to do this but this is going to be Part I.  Good night!

Saturday, October 13, 2012

13/31 - Jersey #4

I swear I have real posts in my head but it seems to be a struggle to apply fingers to keypad lately.  It's a quiet weekend here - laundry, soccer, reading... maybe I'll trying to add writing to that list tomorrow, before we dive back into the chaos of our work weeks.  Here are some soccer pictures to tide you over.

Soccer may not be The Boy's thing.  He played in kindergarten and successfully avoided the ball all season, until scoring one magic winning goal in the last game of the year.  We were bad parents though, and instead of building on that momentum, we skipped indoor (winter) soccer and then skipped 1st grade soccer altogether (we missed the cut off, he didn't seem to care enough for us to beg our way onto a team, we were too busy to push it).  But he wanted to try again this year in 2nd grade so here we are, every weekend and Thursday night.  Except it's been social hour for him, not a sport, and he's perfectly happy sitting on the bench, goofing off with his buddies.  You know how cute it is when the preschoolers pick daisies and roll in the grass during games?  Not so cute when it's your 7 year old and all his teammates are playing hard around him.  For the record, he wasn't actually picking daisies but he was definitely in a fog - more than one ball went *swoosh* right by him without a reaction.

Stretching?  Yoga?  Victory holla'?  I'll never tell.  
Matt & I discussed this ad nauseum because he's not normally a spacey kid and it was so pronounced during games it was painful to watch.  We tried yelling (Yes! Those parents!) but he'd look over at us and wave.  We tried biting our fists to muffle the screaming but then he just kept happily daydreaming.  Maybe he hated soccer after all?  Maybe he was confused?  Scared of the ball?  Maybe performance anxiety was causing him to shut down?  Then Matt had the BRILLIANT idea of taping some professional soccer games.  I really wish I could take credit for this because watching the grown ups play made something click and all of sudden my kid is hustling after the ball and engaged.  Even the coach commented on it.

Action shot! 
We're not signing him for inter-state tournament play anytime soon and he's still the kid with the most bench time (& today we had to talk to him about not lying down on the bench while benched.  Gah!), but we have progress!  and growth!  We also now have the brilliant realization that my son is a visual learner, just like his mommy and his sister.  

What does this have to do with Down syndrome and 31 for 21 you ask?  Ummmm....

Well, since this is now four paragraphs long, I'm going to pass it off as a post:
Parenting any child can be hard.  I've said this before & I will continue to repeat it.  Your kid will not excel at everything and every individual has their own quirks and their own learning styles.  Sometimes you have to thrash around a bit to figure it out, no matter the chromosomal count.
 Also:  The Girl sat fairly quietly during most of the game today (could I get one more modifier in there? She has not been so agreeable in the past).  But during half time I let her run and she booked it across the field.  I heard her brother laughing a bit, "Hey, that's my sister!"  So much affection, right there.  What an awesome kid to call out to his pesky little sister in front of all the boys.

Friday, October 12, 2012

12/31 - 5 minutes

This was taken right before these two left for The Boy's first ever baseball game a few weeks ago. It's topical since the Cards are in the playoffs again tonite. I had to sneak upstairs to escape Matt's muttering & pacing. He did not appreciate my laughter. I'm going to try to finish the same TV show I've been watching for three nights now. Does falling asleep 5 minutes into a show mean I'm old - or leading a full & exciting (& exhausting?) life? Just the exhausting part?

Thursday, October 11, 2012

11/31 - 10/11/12

Did you know yesterday was today is 10-11-12?  Slate calls these Festivals of Numerical Coincidence.  I am noting this merely because I’ve decided all my 31 for 21 posts need to be titled numerically.  Totally unrelated, did you know blogger lets you backdate posts?  [I really meant to do this last night but fell asleep with the kids – getting 8 hours of sleep is its own festival of awesomeness].

In honor of everything falling into line, two vignettes about my children, who do not:
A month or so ago, The Girl’s teacher told Matt that she had walloped some kid that day.  Apparently they were in circle time, it was The Girl’s turn to do whatever it is they do in circle time, but the other kid tried to go instead, so my girl tried to grab/push/hit her.  Matt said he laughed.  Which I’m sure horrified the teacher.  *I* was horrified – that he laughed.  I know The Girl is starting to get frustrated with her communication skills and is at high risk of developing some behavioral issues because of it, but this was a one off and I will tell you that a little part of me is delighted at her feistiness.  No one is going to let her miss her turn.  I would have liked to say we are secretly delighted, but Matt’s guffaw and this post blow that option.
Yesterday an aide at The Boy’s school pulled me aside during pick up to tell me he’d gone to time out during aftercare.  There is, apparently, a rule against going back to your class after a certain point in time.  But he forgot his homework folder so asked teacher#1 if he could go get it.  She said no, citing this inviolate time on the clock.  So he asked teacher#2, who also said no and chided him for shopping his request.  So then he asked teacher#3, who didn’t know about the rule, and let him go.  I understand that there are safety and crowd control considerations, tossed in with a little personal responsibility lesson (remember your stuff!), but he was trying to get his homework, not spray paint to graffiti the school.  I didn’t scold him.  Of all the things I don’t want my children to learn, blind obedience to authority is at the top of the list. 

Love these kids. 

Wednesday, October 10, 2012

10/31 - 8.

I worked till 8. 'Tis 
laaattte.  I can but shake my key
board for a post.  Here:
 'Cause Cate reminded me that the moms shouldn't be cropped out.
Hiding behind phones, however, it totally kosher.

Tuesday, October 9, 2012

9/31 - 3.14

What happens when I
get home from work early, &
The Boy asks nicely.

Monday, October 8, 2012

8/31 - 3 years ago

Beautiful baby,
blue, in the best way.  Chest scar
kissed by science / God.

Photos taken when she was about a year old.
Only 3 years ago?!  Seems like lifetime.

Sunday, October 7, 2012

7/31 - 4 years

In The Girl's birthday post, I mentioned I didn't have that many baby pictures of my girl.  My awesome SIL (yup, of iPad fame), then re-emailed me all the links to her Picassa albums.  Since she's the one with the fancy camera, this is no small gift.  I haven't gone thru all the photos yet and - truth be told - I was thinking about skipping this here blog tonite because I always get a little grumpy on Sundays, since I never feel like I accomplished enough or relaxed enough over the weekend to dive into yet another hectic week, and/or I had some TV watching I needed to catch up on (whichever explanation seems more plausible to you), but these pictures are worth sharing.  

Little buddha.  There may have been a parental figure cropped out who had some highly unacceptable post-pregancy blotchiness that I didn't have the retouching/airbrushing skills to correct.  No, Matt doesn't normally wear jewelry.  Yes, I am that vain.  

Highly tempted to make a joke about the burning holy water (these are from her baptism), but will settle for, "Awww, my little spitfire".

Who is THIS kid?  Good God, is he adorable or what?  

Saturday, October 6, 2012

6/31 - On high school & 18th Birthdays

Well before the long hot summer began, I flew home to CA solo for a quick weekend to watch my little sister graduate high school.  There is a 10 20, um, "significant" age gap between us and I never lived nearby while she was growing up so I didn't spend nearly enough time with her, but she turned out to be a fairly awesome woman despite my absence.  I hope she has a wonderful birthday.  Good thing it's on a Saturday since I don't think engineering students are allowed out into sunlight during the week -  Enjoy your 20 minute celebration!

She's going to school two states over so I'm hoping she'll land here at least one or two school holidays (HINT HINT).

Trips home are always dripping with emotion to start but I will tell you I got a little something in my eye during the principal's speech, "I attest the students, having completed all the necessary requirements..."

Whoompf. There it is.  My girl hasn't even entered kindergarten yet but that was a fun reminder of all the battles and modified curriculum to come.

Disturbing.  Yes, I agree. 

My second take away was the speakers - in a complete reversal of my high school experience, the jock got up and lauded all the diversity in the school, the languages, nationalities, and yes, even the different abilities.  I might have gotten something else in my eye just then.  Damn pollen.  Then the kid with the school's highest GPA got up and tried to sell us on the opportunities in failure and how much he learned & grew as a person after MIT rejected him, forcing him to attend the clearly second rate University of Chicago.  I'm not going to mock an 18 year old kid's speech (my public speaking attempts are stammeringly incoherent), but I bet you can guess which kid I'd rather hire to mow my lawn during the summer.  Do kids even do that anymore?  Maybe not the ones going to U of C.

Three smart cookies.  
I want to stress I'm not against smart.  My family is chock full of various advanced & professional degrees (yours truly being the lone exception), my career floats on the heads of some very bright lawyers, and my daughter would not be alive today if it weren't for a certain cardiac surgeon.  But this child of mine will be traveling a different path, one that is unlikely to pass thru any hallowed halls, and I fret about those unable to see it's value.  That the "jock" applauded it gives me a little sliver of hope & comfort.

Then the speeches were over, caps were thrown, we went home, and I had a large piece of cake.

And appetizers.  I can't show you the cake because it was a brilliant copy of her birth announcement and that's way too much information to share with the internet.

 There was also wine.  There is ALWAYS wine.  

My brother's creation mid-progress.  Isn't it pretty? Curving paths, er, I mean walls.