Saturday, July 28, 2012

And Then We Were Four

Happy Birthday Little One.

Your brother & I have one of those silly games where we take turns saying,
"I love you!"
"I love you more!"
"I love you to the stars and back!"
"I love you to the stars and back a billion times!"
"I love you to the stars and back a bajallion kajallion times!"

Although I could easily list a bajallion kajillion reasons why I love you, that would make for a really long post.  You are turning four years old this year, but I'd have a hard time limiting this to just four things, and loving you to the stars and back ten times four is probably just long enough to drive away most of our readers.  Plus, Mommy turned 40 this year so it seems karmic.
Month One.
I love your grin.  I love the way you pat my back when I hug you.  I love the way you pat your dollies' backs when you put them down for a nap.  I love the way you hug your brother when he's sad.
 I hate that we almost no photos of your first few months.  
5-6 days after they fixed your heart.
I love the way you don't nap anymore, but spend the time reading to your dolls.  I love the way you run away from me laughing when I tell you it's diaper time.  I love the way you've learned to sign.  I love the way you try really really hard to hold up two fingers when you're asking for two cookies.
No nap today.
I love that you know two whole cookies are better than two half cookies.  I love the way you try really really hard to hold up your pinkie finger when you sign, "I love you."  I love that you know all your colors.  I love the way you throw a fit when you think your brother is getting something you aren't.
I love your dramatic pout when we don't understand you or we say no.  I love that you are fearless at the park.  I love that you are fearless when we wrestle and play airplane.  I love that you learned to love the water this summer.  I don't love it when you climb on the dining table and make the lights swing.

I love it when you run across the room to hug me.  I love it when you hug my legs.  I love that you are verbalizing "up" and holding your arms up for me to hug you.  [Bonus:  I love it when you hold your arms out and fall into me from the edge of the pool or the stairs.]  I love that you can tell the dogs to shoo and push them out of the way.
I love that you love to throw the dogs' toys for them and feed them your toast.  I love the way you try to sneak out the bathtub.  I love the way you hold your feet up for me to wash and then laugh hysterically when it tickles.  I love the way you insist on brushing your own teeth first.
I love the way you agree, most of the time, that after you're done, it's Mommy's turn to brush your teeth.  I love the way that when we're done, and I pick you up, you always give me the biggest hug and smile at us together in the bathroom mirror.  I love that you're signing full sentences now.  I love that your second sentence was, "I want play Mommy's hair."  [Your first sentence was "I want candy."  I might not love that.  Though it is adorable.]  I don't really love the hollering, but I understand it.

I love that your very very favorite activity is to sit behind me on the couch, with a blanket, and play with my hair.  I love that you aren't yanking on it anymore.  I love that you try to sing with me when I'm humming your nighttime song.  I love that you are as a terrible singer as I am.

I love it when you ask where your brother and daddy are.  I love it when you ask for more books at bedtime.  I love that you take your plate back to the kitchen after dinner.  I love it, most of the time, when you try to help me empty the dishwasher.

I love it when you growl like a tiger or bear when we're reading about them.  I love your "Mmmmmm" when I give you a treat.  I love the way you say "Thank you" after.  I love that you might be left-handed.

You have Graced our lives.
Happy Fourth Birthday.
Almost Four.

Friday, July 27, 2012

NDSC x2, Saturday

After the bloggers' session on Friday, we visited with friends for a bit but everyone was toast so we called it early.  Early for the adults, at least.  You know what happens when you push a toddler past the point of exhaustion?  They get a taste of adrenaline and decide sleep is for schmucks.  Mix well with one non-child proofed hotel room and the boys' late night arrival from Chicago and you get me sleeping in till 8:15, a mere 15 minutes before the first of the sessions for which we'd flown halfway across the country.  Whoops!

But I was super mom (super disheveled, that is) and ended up only 5ish minutes late for Brian Skotko & Susan Levine's talk - "What Your Other Children without DS are Thinking".   IT WAS FABULOUS.  They have been talking to siblings, running surveys and presentations for years, and had lots of reassuring statistics:  94-96% of kids reported they felt affection & pride whereas less than 5% of respondents wanted to trade in their brother or sister with Ds.  They rightly pointed out, to much laughter, that most kids want to swap out their siblings occasionally, typical or not, and 5% might be even be lower than the average.

A lot of their talk was just good parental advice - keep the lines of communication open, ask clarifying questions, spend one on one time with each kid, be fair, acknowledge feelings - even the negative ones, & be willing to talk about the hard stuff.  And, boy, did they talk about the hard stuff.  They threw out some gut wrenchers, asked by actual children:
"Why does her face look odd?"
"Will she be ugly?"
"Is she going to die?"


When my girl was younger I heard a few times how great my son was going to turn out because of his sister.  I hate this.  We weren't getting a dog so The Boy could feed it every night and learn about responsibility.  His sister is an individual, not an object lesson, and she has every right to live her life free of pedestals & angel wings.  That said, he IS a neat kid.  I'd like to think that's a result of the fabulous parenting job we're doing but who knows?

Earlier this summer a bunch of neighborhood kids were over.  They'd been playing nicely for hours but late in the afternoon I walked back into the living room to see my never violent son pushing the other kid and yelling, "Don't you call my sister that!"

The kid had said something mean and my son had stepped up to the plate at the ripe ol' age of 7.  I sent everyone home (they were already at the "ten more minutes" mark), had myself a good cry, and then we sat down and had A Talk.  I told him it was going to take his sister longer to learn things, that she might look a little bit different, and that some people wouldn't know how to act around her.  As they got to know her, they'd learn she was just like most kids but no one is ever allowed to be mean to her, especially not in our own house.

Then I told him he was a really awesome big brother and I made chocolate chip pancakes for dinner, by request.

[And, HELL NO, I didn't mention the pushing]

But my son isn't angelic either.  Not too long after, during my birthday weekend at the Lake of the Ozarks, we went on a tour of Bridal Cave.  The girl was hollering and the cave amplified her noise, drowning out the tour guide.  The Boy looked pained and kept trying to shush her.  Then he just walked away and shadowed a random family of strangers till we were done.  What are the odds he was in that 5% during those ten minutes?  Funny stuff.

I googled and found a version of Dr Skotko/Susan Levine's sibling presentation here.  It's long, but if you have other kids, I'd recommend it.

Wednesday, July 25, 2012

NDSC! Friday.

Guess where we were this past weekend?

The 40th annual National Down Syndrome Congress Convention!  This was the first year we went and it is definitely absolutely going to be an annual event going forward.  Even if we have to sleep on the sidewalk and eat nothing but beef jerky while there.  I am a quiet solitary creature but these were my people and it was marvelous to be home.

Well, they were mostly my people.  The lady behind me in the coffee line talking on her cell about all the "special angels" around her in the hotel - she might have more a second cousin on my ex-step-brother's side.  My daughter, for one, was decidedly not angelic on the flight home... but I'm getting ahead of myself.
She looks sweet here.  Don't let her fool you.
Instead of covering 48 hours in one marathon post, I'm going to try something novel and break this up into readable bits, starting on Friday:  Matt & The Boy were actually supposed to arrive before me but got stuck in Chicago for most of the day so I ended up at the "bloggers' sharing session" with The Girl.  The one session they specifically recommended you NOT bring your child.  Especially not a child that had been rudely woken at 4 that morning and who refused to nap all day.  Hmmm.

And while I don't want to start this off on a down note (ha!), this was the session I was most excited about and the only one I ended up feeling a bit meh about after.  Due in large part to that fact that I had also gotten up at 4 that morning, had checked into the hotel a mere 15 minutes before the session started at 3:30 (math whizzes will note that was Travel Hour 11.25), and then spent most of the time trying to keep The Girl's hands out of other people's purses.  There were some folks there that wanted to start a blog so a lot of the discussion was about wordpress versus blogger, about how often they should post, and what they should post.  Since my last post was spent pondering what sort of vibes I'm sending out into the universe, I'm not unsympathetic, but it wasn't quite what I expected.

My two cents, which I didn't share at the time because I was really, really tired:  just do it.  There's no magic formula.  Share what you want, adopt monikers, reveal your name, post pictures, don't, write bad haikus, share recipes, advocate, spend your time venting and unburden your soul, or become a Happy Pretty Blog and provide good PR for the rest of us.  Post as often as you want or just when you can.  Write about Down syndrome, therapy, kids, dogs, toenail polish, God, politics, work, or your latest trip to Target.  Or all of the above.  It's your space.  I don't have hundreds of readers so wouldn't be able to tell you how to snag them, but is that what you want?  It's not just about the numbers.  As you poke around on the internet you will hopefully find kindred souls, who make you laugh or think or cry, or maybe even all three and, if you are really really lucky, they will read your stories and enjoy them.  Even the one about Target.

And then one day you might meet them in person and you'll know they're just as fun & fabulous IRL as they are on screen & you will be so very grateful you stumbled into this community.

[And you might also meet a bunch of people you've been following for forever but haven't introduced yourself to and you might freak them out a bit with your stalker-like enthusiasm so you'll resolve to delurk on more blogs.  Just sayin'].

Totally unrelated photos taken with Matt's craptastic camera phone on Saturday.

Related photos, also of craptastic quality, but taken Saturday night at our little pizza party.  Which I think needs to become a tradition.  Am taking name suggestions - not quite BlogHer, how 'bout BloggeDs?  Some of my favorite people are missing - they either didn't make it to DC or went to the banquet instead.  Ah-HEM.

In no particular order:  Baxter Sez, *Results Not Typical, Unringing the BellBig Blueberry Eyes, and Life Decanted (at lunch).

Monday, July 16, 2012

Best of Times, Worst of Times

About two months ago I had lunch with an expectant mom who'd confirmed via amnio that her little one had an extra chromosome.  I don't wish to violate her privacy but I think I can share in true narcissistic blogger fashion how very, very odd that conversation was for me.  I had this sensation of looking at my life through a shop window and judging.  Did I seem happy?  Anxious?  Frazzled?  She had this URL so I went back thru my posts to make sure I hadn't been in a blue streak.  I evaluated the cuteness level of my kids' photos (extra adorable, as usual).  I suddenly felt this great weight of representing The Future and couldn't decide how to condense our entire lives into one hour over salads.

At the time I was also driving around with a big piece of poster board in my truck because I'd fully intended to waive my no-self portraits rule for this project.  But I could not think of a single damn thing to say.  Every empty platitude I'd ever heard crowded my head and mocked me.  Special kids for special parents?  Welcome to Holland?  Iraq?  Sub-Saharan African?  It'll be fine?  No one should ever ever say this to a new parent.  My first son was stillborn at 37 weeks because of a freak cord accident.  My daughter was given an extra chromosome and a wonky heart.  You cannot make that promise.
Recognizing my dark tendencies, what I really wanted to do was direct that new mom over to some Happy Pretty Blogs where there is no fretting about anesthesia for my 3 year old's 4th surgery (even if 3 were "minor") or struggling to get 40 hours in at work when the day care keeps calling because I fed my child too much fruit.  I ended up chatting about how cute my girl was, how much she loved her dogs and her brother, I downplayed some of my concerns ("we're doing a little private speech therapy on the side"), and I said that parenting any child can be hard.

Though facile, I really do believe that.  My son had endless screaming colic for 9 months straight, shellacked his entire room once with Desitin, had his forehead stitched up, and his hand superglued back together.  My daughter needed to be fed 16 hours a day for the first three months of her life because we were too stubborn to rely on the feeding tube (because we'd read something about palate formation in kids with Ds), she recently doused the living room in syrup, and she had stitches in her forehead, in almost the exact same spot as her brother.  And after they fixed her heart, they superglued her chest back together.
Yes, I know our front door needs to painted. 
Money's always an issue but that's because we didn't cut fast or hard enough when we went from DINKs (double income, no kids) to TKO (two kids, one income), and Matt's fledgling work from home gig selling large expensive industrial things coincided perfectly with the economy crashing.  The medical bills, therapy, & life insurance don't help though.  Really don't help.  But I don't like mentioning it because I don't want anyone to think my little girl brought me to the hand wringing, hair pulling state I was in over recent car repairs.  Not when there are trolls out there who believe she's a burden on society.
I wonder what a random person would see reading this.  A "typical" family's jumbled roller coaster of good days, birthday cakes, & vomiting flu?  Or "OMG - Train Wreck!  (same breath) do you know about their daughter...?"  I wonder what my family thinks?

There is so much joy and love.  So many snuggles, movie nights, and giggles.  Such a long list of favorite games, bedtime stories, and songs.  I like to post pictures from the park and birthday parties but I'll admit I use this space to vent.  If the latter has taken up too much space here, then the failure is mine.  These are the very best days. 

Wednesday, July 11, 2012


I'm home today and, if all goes according to plan (HA!), I'll take the kids to the pool in 49 38 minutes, thoroughly wear them out, they will happily thereafter take a nap (HA!), and then I will have 2 hours (*snorkle*) to write a real post.  In the meantime, I'm buzzing through my reader and found this.  It's on youtube, which means I'm probably the last person on the planet to see it, but am sharing anyway, because I can.  Originally seen on APOD, which I believe I found via Ms. Elizabeth, and which I love because it's nice to occasionally be reminded in the midst of CarMageddon that we are just a speck on a pale blue dot.  And that it's good to dance.

Monday, July 9, 2012


Let's see.... what was I saying?  Oh, that's right!  I wrote, "things have  actually been.... GOOD."

As my Gigi likes to say, "That'll learn ya."

We spent a fabulous day with friends on the 4th - started early with mimosas and a parade and finished with a Just Dance contest on the Wii.  No, I'm not talking about the kids.  There may have been some contraband video taken but this was done expressly against house rules and once caught I promised not to post.  You know you've found good friends when you can practice your scrunched up 80s pop star face singing into a ketchup bottle, and then dance to Abba (?!) and practice your moon walk without wanting to flee the state the next morning.  Wouldn't want to mess that up! 

But then around 4am, The Boy came into our room and started writhing around till he finally puked at 5. You know who employers LOVE?  People who call in sick after a holiday.  Matt & I had some hurried negotiations about who it was going to look worse for and I lost.  But it was fine!  I needed a quiet day to catch up - in 24 hours (of which 12 were spent elsewhere) we had somehow accumulated 4 loads of dirty dishes and there was mail and kid art piled up so high it was a firehazard. 

You think I'm joking about the dishes, don't you?

So Matt takes my car, because it gets much better gas mileage than his and doesn't reek of rancid french fries and moldy coffee.... he calls within 15 minutes to tell me it had blown up.  Started vibrating and ALL the warning lights came on.  In a fit of luck he was 2 miles from the dealership but they were busy & couldn't get to it till Friday.  I initially thought I'd get a post in on my bonus day at home, but I spent Thursday in a bleak, dark place and organized the pantry instead.  Because when a giant meteor is heading toward your financial world, it's best to have the pasta, rice, and couscous all lined up together on one shelf.

Turns out it wasn't the engine or transmission, which is what I'd spent the day sulking about - a new car is soooo not in the budget - but it was money we don't have, followed by MORE money yesterday to get Matt's car patched up, because in the two days my car was shopped he'd been pulled over twice for an expired registration.  Missouri has this ridiculous standard that vehicles be inspected & roadworthy (what?) and we were putting off the mortgage payment in work his car needed because this summer has been a constant stream of unexpected bills.  He is now the proud new owner of operational tires, brakes, rotors, and some muffler do-hickey - though despite all the money we forked over they did not fix the french fry smell.  Service these days! 

So mommy's been a little grumpy.  A mood not improved when The Girl got ahold of the syrup bottle yesterday (it was so much worse than you're imagining), when The Boy gave his friend a black eye with a tinker toy, or when I, in a pre-coffee fog, tried to make waffles with olive oil.  Not tasty, in case you're wondering.  But I hauled them off to the pool Sunday (The Girl finally went down the slide solo! Huge!), followed by a nap for everyone and we'll all carry on.  Tally-effin'-ho!

*My co-worker used car-ma in an email after I begged the office for a ride home Friday. This was followed by a series of emails citing: car-maggedon, car-pocalypse, pandCARic (pandemic?), and e-CAR-nomy. Awesome.

Monday, July 2, 2012

Water Baby

The older kids at summer camp had a water-balloon-baby project (less stinky during summer than the traditional baby-eggs?).  The Boy followed suit.

A seven year old's joke:
What's my baby's favorite drink?
Chocolate milk?  No!
Juice?  No!
Coffee?  No!
Wine?  Nooooo!!

IT'S WATER.  Really, mom, don't you get it?  It's a water balloon.

He thought I was a lot funnier when he was 5.

Sunday, July 1, 2012


What's this?  A post?!?!  Hold onto your hats everyone, I know it's been a while.

Jeez, I hardly know where to begin or what to write about.  Apart from losing Maude, things have  actually been.... GOOD.  I know in writing that the universe will be forced to squash my exuberance by sending us more plumbing problems or a three year old hospital bill, but I'm going to try to enjoy it for a bit and, since y'all put up with my venting the rest of the time, I like to reassure you it's not always gloom & doom around here.
The Boy, with the electrical board he got for his birthday.
Hie thee to engineering school, young man!
Health?  The last come-get-your-kid call from daycare was a full two weeks ago.  That might almost be a record.  *I* have a snaky lingering cough but haven't missed work and it hasn't stopped me from running lately.

Which I have been doing!  After spending six months on the couch, I dug my running shoes out of the deep recesses of the closet, shook out the spiders, and applied liberally to my feet.  I've even moved (slowly) past that painful start up, single, 20 minute-I think I'm having a coronary-mile.  I'm not running as often, far, or as fast as I'd like, nor have I magically dropped 20#, but even my little somethin' is a vast improvement over the ass-widening last six months.  I might even sign up for another half marathon this fall, for a little motivation and to snag another T-shirt.  
NOT running shoes.
We were late for speech, I grabbed The Girl's sandal, and...
The weather has not helped with the running.  We're in the middle of a brutal heat wave, so most of my recent miles have been on the treadmill in the musty basement (which doesn't help the cough) - but we have been going to the pool almost every day I'm home.  The Boy can now swim underwater from one side of the pool to the other and the The Girl has been jumping into my arms from the ledge.  Today she even released her Grip of Death and bobbed around in her floatie (this is huge!).  Finding swim lessons has been a colossal FAIL but I'll resume the search on Monday.

Work?  I try not to write about it too much, especially since I may have been xxxxx enough to check this previously anonymous site from my work computer, but it had been, um, hard lately.  Really hard.  But there was a long conversation/general clearing of the air which broke the tension and, bizarrely - because it changed nothing - made me feel better.  I have less flexibility now - which really, actually, makes my life IMPOSSIBLE (see above, re: calls from daycare), but I can still work 4x10s, so am home on Wednesdays with the kids, and Matt's schedule is flexible, so we'll figure it out.  Ultimately, I really enjoy what I do and since I keep picking the wrong lottery numbers, this is the new normal.  So there.  Cryptic enough for you?

This is the best part:  in four-ish months my commute will be cut by more than half.  From 35 miles one way, to 15.  You know what that is?  TIME.  Precious, precious, life sustaining, family building, sanity preserving TIME.  90% of my kvetching here has got to be about work/life balance issues, yes?  But the great gods of Corporate America have just given me back 80 minutes a day.  80 minutes to spend with my children.  80 minutes to make them a dinner that doesn't come out of a box, to yell at The Boy about his homework, to work on The Girl's fine motor skills, maybe even work on potty training, to go running, to go on a bike ride with The Boy, to have a dance party with The Girl, to take them both out for ice cream, to unearth the vacuum cleaner, maybe even use it, and maybe even to go running with our e'er shedding dogs.  80 minutes to tuck the munchkins in and read them an extra story without stifling that voice in my head that's yelling, "SERIOUSLY!? JUST GO THE EFF TO SLEEP. I HAVE TO BE UP IN 6 HOURS."  80 minutes to check in with you guys, leave the occasional comment, and to maybe even spend some time with my husband.

OK.  I might need more than 80 minutes to do all that.  But for all that is sweet and glorious, it sure as hell helps.

[For all the eco-judgers out there, there was a whole string of decisions and factors that led us to buy where we did.  It wasn't because we hate Mother Earth and are trying to choke her with our gasoline emissions.  Not that you wouldn't know it by the oceans of gas we've been burning these last years.]
With Aunt Mary at MoBot during the Chinese Festival.
That Dragon is made out of... china.  Plates & cups, specifically:

What else?  This is the first weekend we haven't had visitors and/or fun things planned in six weeks.  Aunt Mary was here (when The Boy got sick on his birthday - boo!), Tima was here the following weekend (yeah!  rescheduled party!), I went to CA to see my little sister graduate high school (whaaa?), we went to the Lake of the Ozarks to celebrate my 40th birthday (*gulp*)... I think I'm forgetting something.  Oh yes!  Last weekend, in which the washing machine ran for 48 continuous hours because we hadn't done laundry in 5 weeks.  I think next weekend might be open but then.... WE ARE GOING TO THE NDSC CONVENTION IN DC!  I can't wait to meet you guys!  (Yes, even YOU).  Any fellow-eventers wishing to de-lurk, now's your chance.  Also, any other cheapskates skipping the big banquet, let me know - we're having a pizza party in our room on Saturday.

I still want to write about the graduation, I have a bunch of miscellaneous idle thoughts & tidbits on special needs I'm going to lump into one post, and at some point I will be forced to vent about the amount of money we're spending on private therapy this summer because Oh, Dear G*d, The Money... but then I will joyfully announce that WE HAVE WORD APPROXIMATIONS.