Wednesday, October 22, 2008


This picture was taken in the lobby at our 2 year follow up with Louie's cardiologist.  It's excruciatingly difficult to get two "walker" walkers together in a photo frame.  I was there alone.  With Louie but adult alone.  Chris was traveling for work.  We didn't reschedule the appointment because apparently you don't just whip in to see the cardiologist and appointments are made well in advance.  Unless it's really serious.  

Screaming kicks off with the weight and height check.  Don't even think about taking his blood pressure.  Then, the nurse starts casually putting little stickers all over his chest and says, "okay, we'll get a quick EKG.  I'm thinking, What? A quick EKG? I knew nothing of this EKG business.  First of all, what's an EKG and second of all what's an EKG?  As an aside and what I'll shamefully admit to you is that I still don't know what it stands for or, gulp...measures.  But it came back good, so yay!  Oh, what must you be thinking?  But I do know that it's not nearly as scary as it sounds and it doesn't take long.  Just a bunch of stickers and cords.  

I simply can't explain the way my brain wanders out the door when I go to these types of appointments.  You know, the big appointments. It's like my mind says, "Okay, you're on your own.  Got everything?  Good, good...see you in the parking lot afterwards."  

As to why I still haven't looked EKG up?  It's on my list.  And in my to file piles.  And under my couch.  And in the dishwasher.  Wrapped up with a diaper.  I've successfully made myself feel extremely guilty.  I'm about to sign off and Google EKG.  

The good news is that Louie's heart still looks great.  Just thumping away like it's supposed to. The bad but good news is that he will continue to be monitored.  For some reason I was under the impression that after age two, the risk for developing a heart problem decreases significantly.  Again, I should have asked, but that mind; she was long gone, in the parking lot reading a list of cardiology questions and eating doughnuts.  

So, it's good that he will be monitored.  Otherwise, I might worry in the future that it could develop later in life?  Kids with WS will always be at a higher risk for developing a heart issue. If that made sense to you, please contact me because we're soul blogger friends.  

Well, I'm off to the World Wide Web for some old fashioned Googling.  And Chris is talking to his mom about a family member named Willie Jo.  Willie Jo.  I'd better go see what's going on with Willie Jo.  

Break's Over.

Louie's fall break is officially over.  Otherwise known as The Louie and Ace hair-pulling challenge '08.  Where are effective parenting skills when you need them? 

I'm trying to prioritize my life.  You know, put things in order of importance.  I guess that's obvious, since that is, after all, the definition of prioritize, right?  Anyway, that leaves blogging kind of at the bottom. But here I am, sneaking in a little unprioritized blogging!  This will have to be short.  

I'll try to catch you up on my life of endless excitement and productivity over the next few postings.  

Why is putting sunglasses on our kids such entertainment? Pure comedy.  Come on, everybody does it.  If you have kids, then you have a picture of your baby that looks pretty much like the above pictures of Louie and Ace.  Baby's wearing' shades. Good, clean fun.  

Saturday, October 11, 2008

Helping the Economy.

Since having babies, my desire and funds for shopping have decreased dramatically. However, with this downturn of our economy, I've decided to help by purchasing extremely indulgent and disgustingly useless stuff. 

I bought a $45 bra. $45? I haven't worn a real bra in 4 years. Just dingy white Hanes sports bra, with an occasional gray one for color and variety. At a time when I should be thinking about a 3 month emergency fund, I buy bras?

Until just last week I have never stopped to shop the dollar section at Target. 
In light of my superfluous spending, I go dollar aisle style to find useful, cannot-live-without cheap stuff: 
2 plastic scrubbers with screw on lid for dish washing liquid both of which have now been ground up by the disposal
1 "Go Green" beanie for ages 7 and up (yes, my children are under 3)
1 Elmo book with squeaky ball attached
4 pack magnetic yellow plastic refrigerator clips
2 pack Halloween themed plastic bowls for Louie to use for cereal
1 pair round earrings, white with brown flowers.  I will never wear them.  Never.  
2 "The Office" pens

Maybe next week I'll get that microplane rotary grater I've been eyeing at Williams Sonoma. That's a joke.  I would never buy one of those.  How do people come up with this stuff?

Chris is sitting nearby eating Raisin Bran. Doesn't everyone love the sound of their spouse eating cereal? I mean, isn't it the best thing ever? And on top of that, I'm using his silly PC and it's really annoying me. I should go now...

Should He Stay or Should He Go?

Louie has been on fall break for the past two weeks. His school has a balanced calendar and fall break is three weeks. I was apprehensive about him having so much time "off". This is the longest break he has had since starting early intervention two and a half years ago. He regressed in some areas during his one week Christmas break last year.

The first four days of fall break were, ummm...hmm...filled with hair-pulling, pushing, kicking and crying; but mostly hair pulling. Louie pulling Ace's. I walked in the room numerous times just in time to see Louie grabbing a handful of Ace's hair and proceeding to pound his head on the floor.

So far we haven't seen any regression; he has actually made progress. He is walking unassisted and without prompting about 70% of the time, making transitions between two different surfaces and going over door thresholds. He's also beginning to walk on carpet! And, he just started babbling "buh"! Trust me, that's big stuff.

Being able to spend this time with my two boys and seeing Louie continuing to make progress during his break provokes me to toss (toss, obsess, what's the difference?) around the questions about the efficacy of early intervention and pre-school.

When Louie is in school from 7:30 a.m. until 1:00 p.m. and naps from 1:30 p.m. until 4:30 and goes to bed at 7:30, there's not a lot of time for a relationship. Louie and I have spent the past two weeks connecting in ways we never have. Or haven't in a long time.

Louie has been "working" since he was 8 months old, when I practically blindly signed him over to the world, to the professionals, the therapists, the doctors. All with the goal to provide him with the skills to live in the world the way we live in the world? To act "appropriately"? To play appropriately? To make eye contact? To torture him with blood draws and echo cardiograms? I know, he needs these skills, these acceptable behaviors, the assurance of a healthy heart and thyroid levels.

Tonight, though, I sit and ask myself this question: When does this child get to be a child? And experience real, unprompted or self-made, self-directed joy? The way he has since he's been at home with us?

I've been missing spending time together since he started pre-K. And before that, his schedule was similar but at least I was with him more since some therapies were at our house. But he has made more progress in the past 9 weeks of pre-K than more than two years in early intervention. So is this about me? Or is this about him? Is it about living in a connected family?

We're loving not getting up at 6:30, not getting ready to go anywhere and staying in our pajama's till 10:00 a.m.. Lots of snacking, wagon rides, going to the park, listening to Louie's favorite relaxation music Cd's, doing puzzles and stemming out on stuff if we feel like it. Louie repetitively turns his maraca on, then off, then on, then to Spanish, to English, back to Spanish, low volume, high volume and repeat. We let Louie stay up until 9:00 p.m., one night, eating popcorn and reading People magazine, thumbing back and forth between Justin Timberlake and Jessica Biel's trip to Italy and the back cover, that just so happened to have an ad with about 500...can you guess? Road signs! He has such an affection for signage of all types.

We've been enjoying our somewhat lazy fall break days.  Ace "saw" and felt the wind for the first time the other day. When was the last time you were there when someone became aware of wind? At first he was scared, bewildered; but then he began to understand it, expect it, and laughed as it blew through his thin brown hair.

Yesterday, Louie awkwardly pushed a toy grocery cart along the uneven surface of our backyard. Ace, close behind, was practically running to catch up, his grace and strength emitting from his tiny body like the sunlight splashing through the spaces between autumn's changing leaves. Two brothers, and for one, nothing is easy. For the other, it all comes with such ease and instinct. The miracle of human development. A fascinating miracle.

I've been watching the two of them a lot lately and thinking, if only I could stop time and hold this moment. If only I could wrap up every baby laugh and squeal, memorize every inch of Louie's wobbly string bean legs and Ace's chunky thighs, if only I could save these days to savor again later. Otherwise, how will I remember these miracles, these gifts, that are passing almost invisibly, like a steady wind through my life?  These babies will become men.  These moments will become memories left to blow softly in my hazy mind's eye.