The Other Side

I’m having one of those days when I hate Down syndrome.

Because of the DS, we have to take Evan to several different doctors: his regular pediatrician for well-checks, a cardiologist for follow-ups after his heart surgery (now only every two years…yay!), a geneticist for…well, I don’t know what exactly, but I guess it’s a well-check of sorts, an opthamologist for yearly checkups, and an endocrinologist for yearly checkups as well. We’ve been really fortunate that, aside from the heart defect which was repaired over two years ago and is now just a distant memory, Evan has been very healthy. His first year, it seemed like we had a doctor’s appointment every week or two, and if I thought about it too much, it would get really overwhelming, and scary. But after that first year or so, there haven’t been many, and they’ve been spaced out enough that it’s just not been a big deal.

Today, though, it was the endocrinologist, to check his growth and thyroid function. He’s not had a problem with this in the past, and the nurse practitioner we saw today (we never saw the actual doctor, which I guess is a good thing) was pleased with his growth, and doesn’t anticipate that there will be a problem with his test results. After she checked him out, we were sent to the lab to have blood drawn.

I had to hold Evan down, while one nurse held his arm and the other (nurse? phlebotomist?) did the draw. He was whimpering before she even got started, which threw me off because really he hasn’t had blood taken all that often, and it’s been over a year (other than a finger stick at the pedi) so I’m surprised he remembered it. Anyway, she stuck him (on the first try, fortunately) and he let out this bloodcurdling scream and continued to scream and try to flail around and was yelling “No! Stop it!” over and over and over. And he’s crying, and his nose is running all over the place, and he’s saying “Mommy, Mommy” and I just wanted to take him and run from that place, far away from needles and nurses and places where kids who are otherwise healthy are put through this over and over again just because they have one stupid extra chromosome.

I’m sure it’s not PC to say these things, especially during Down Syndrome Awareness Month. Yes, I’m aware of all the amazing things about my kid with DS, and how much I love him, and am reminded of all of this on a daily basis. But I’m also reminded of how that extra chromosome complicates our lives, and how there’s all this extra stuff floating out there, and how sometimes, that little bit of extra just hurts.

Preschool

Evan started attending his new school at the beginning of September. He and Eli both go there, although they’re in different classes. It’s a Montessori program, and the classes are mixed-age groupings of 3, 4, and 5-year-olds. It’s a typical preschool program, and he has an itinerant special educator from the school district who visits once a week, as well as an OT who does the same. (He’s still getting PT and speech privately, both once a week). He’s the first child with Down syndrome to ever attend there.

Aside from a few tears the first day, Evan is doing great. Better than great. I’m surprised how well it is going, actually. I was worried that he’d be uncooperative, or not interested in the activities, or would wander off, or would pee in his pants, but he’s not doing any of those things.

This note was in our box yesterday:

Evan is doing wonderfully well! Miss M. (the teacher’s assistant) is great with him. He carries his work from shelf to table, using both hands. He does his work with some help – not much – and puts his work away. He does a good job in the circle. He is very tired at lunch but cleans up after himself.

He is a delight in the class.

Thanks,

Miss J.

How about that? A delight. My kid.

When we got there this morning, we’re standing in the doorway to the classroom taking off backpacks, and I hear this:

“Evan’s here! Evan’s here! Yay! Evan’s here!”

And I look up, and this little red-headed girl is jumping up and down with glee. She drops her toy and runs over to us, and she and Evan embrace like they haven’t seen each other in years. She is genuinely excited to see him. When we leave in the afternoon, kids are clustered around to hug him goodbye. He waves and says goodbye to all of the kids, and the teachers, and the administrative assistant. I have to drag him out of there.

He’s learning. He’s doing well. He has friends.

Delightful.

EDITED TO ADD: (Of course, none of this means I’m completely relaxed about this whole thing, you know.  I’m still anxious every time I go in there to pick him up…worried that he will have had a potty accident, or that he’ll have done something horrific, or that he will have pulled someone’s hair, or that he will have escaped while playing outside, or that note in our box is from the director, giving us two week’s notice to find a new school for him. It’s just my paranoid nature, I guess.)

20/20

This morning Evan had an opthamologist appointment bright and early; because he has Down syndrome and is at a higher risk for vision problems (and also because he’s my kid and I can’t see a foot in front of me if my contacts are out), he gets a yearly checkup. I got Eli delivered to school and headed across town with the littler boys for this 8:15 appointment.

We get there, and there are already at least 15 people signed in ahead of us. They start early at this place, and really cram ‘em in. It’s the only pediatric opthamologist in town, and they do a brisk business. We wait about five minutes before we’re called back, at which time I have to drag Evan and Cal away from the train tables, which did not please either of them. (I’ll never understand why they think the train tables at any doctor’s office are the best things ever, while they never, ever, ever play with our trains at home.)

Anyway, we wait in the exam room for a while, where I try to strategically position myself in front of the most expensive looking equipment to shield it from Calzilla, who insists on touching every single thing in sight. Evan’s pretty well-behaved, perched in the big chair reading a book. Cal is doing okay, too; he just requires constant vigilance on my part. We wait for ten minutes or so and the boys start getting edgy. They also both get gassy for some reason, and you know, we’re in this tiny room with no cross-ventilation. I decide it’s time for a change of scenery (and an airing out), and open the door to take them to the bathroom because I’m pretty sure Evan needs to pee at this point. (He’s still not telling us when he has to go, but I’ve figured out that if he doesn’t yell “No!” in my face when I ask him if he needs to go, then, yeah, he needs to go.)  Of course we run into the doctor who is finally ready to see us but he’s gracious about it and tells us to take our time.

Once we’re back in the exam room, the doc comes in, spends exactly 45 seconds looking at Evan’s eyes with all sorts of lenses and lights and whatever else, pronounces him to have excellent vision, and that he wants us back in a year. He then hands us a bill for $236 and walks out the door, on to what is probably his twentieth patient of the day and it’s only 8:45.

On the way out, I pass a piece of artwork, underneath which is a plaque, commemorating this doctor for his “outstanding contributions” to the practice. Those are some outstanding contributions, all right. Just under $5,000 worth, all before 9 AM.

I’m just glad we have decent insurance.

Slacking Already

So I missed yesterday’s post. Day 3, and I’m already behind. I think I’ll play the pregnant card.

Yep. You read it right.

Baby #4 is on his way. Due on, or around, but if following tradition, probably before April 4.

There. Does that count for two posts?

Since you asked…

This one’s for you, RK.

I took this maybe a month or two ago. I realize that nobody’s smiling and only one of them is looking at the camera, but it was the best I could do. No matter how much I begged, pleaded, bribed, and cajoled, the boys would not all cooperate at the same time. I won’t even tell you how many times I put Cal back in his chair.

The older Eli and Evan get, the more they look alike, I think. This resemblance, coupled with their infectious giggles, penchant for leaping off furniture, and sometimes uncooperative personalities, is just another example of the fact that people with Down syndrome are more like their families than they are different. (Cal has all of these traits, too, but he doesn’t look like anyone else…not sure how that happened but luckily for him, he’s cuter than the rest of us.)

Jumping Back In

Dear Blog,

I’m sorry. I’ve been neglecting you for far too long. What do you say we start over? And what better time to do that than during the Annual 31-for-21 Challenge, hosted by our dear Tricia?

This month, lots of us will be posting every day for Down syndrome awareness. Some of us might not quite make it every day, and others of us may eek out a post or two here and there. I’ll do my best to keep up.

It ain’t what it used to be, Blog, but I’ll try to make it up to you. Can you ever forgive me? And, dear Readers? Is there still anybody out there?

(It’s been so long since I’ve written here that I can’t even figure out how to get the html for the 31-for-21 logo to work. It seems to hate WordPress for some reason. Maybe by the end of the month I’ll figure it out.)

UPDATED: IT WORKED! THANKS FOR SENDING ME NEW CODE, T.

“And so begins another day; crazy stops along the way…”*

It’s been a while, huh?

We’ve been on vacation. And then another road trip for me, with my mom to go to this museum and a little side visit to Tricia’s, which was most excellent.

To be completely honest, I just haven’t been that into the old blog lately. I’ve sat down to post many times, but this great sense of laziness overwhelms me and I have nothing interesting to say anyway and so I get up to fold laundry or something. There’s a lot to be done around the house and I feel like if I don’t get this place organized ASAP it’s all going to spiral out of control.

We went to Edisto on vacation. A beautiful house on the marsh, kayaking trips, a full crab trap every morning, and splashing in the ocean. See?

Eli’s first catch: a stingray.

Mom and Evan at Magnolia Gardens in Charleston (scene of The Infamous Shoe Over the Bridge incident…let’s just say that this child arrived with two shoes but only went home with one and in the process gave his older brother a nervous breakdown. Eli was VERY upset about the floating sandal. Evan could have cared less.)

Floating on the river:

Sweet baby boy on the dock (you can’t see this but I had a death grip on his ankle…he liked to be way too close to the edge for my comfort level):

This was mostly the view we had of Cal the whole time (hence the ankle-gripping, above):

Getting ready to ride the waves:

Fighting over some toy, as usual:

How many people can you cram in one kayak?

At the Dan Zanes show on our last day of vacation (*post title from “Wonderwheel”):

Rock-and-roll! (Eli liked the show for about 10 minutes before becoming overwhelmed and retreating to the back of the place to leap off the steps four hundred times. Evan loved it for about 45 before falling asleep on his Dad. Cal? Completely NOT interested and a total waste of ticket money.)

So that’s the vacation wrap-up. Now, back to reality and some floor-mopping or some other sort of drudgery.

“So anyway…” she says as she changes the subject

This week both Evan and Cal are on vacation from their schools, so they’re spending a few days at their grandma’s so I can go to work. Eli will be the only kid at the house, which hasn’t happened since, oh, 2006.

We’ve got some fun stuff planned. I’ll be working during the mornings, but the afternoons are reserved for the pool, the movies (his first one!), and maybe even going out to eat. I think it’s going to be a lot of fun (and spectacularly easy) to just have one kid around. It will be good for Eli to have his parents all to himself. It will be good for the parents to NOT have to get up with Evan at 6:02 AM like we do every single morning.

Sometimes I feel badly for Eli that he didn’t get to be the only kid for very long. Only 13 months, in fact, so obviously he doesn’t remember a time when there wasn’t a brother or two to compete with. He is a really well-behaved child when he doesn’t have any competition. I think we’ll have a fun few days.

And although Evan and Cal are a LOT of work, I kind of miss ‘em already.

Yet another fool in politics

It’s no secret that I’ve never been a fan of Sarah Palin. And you’re probably wishing I’d just let her crawl back under her rock, and all of that, but my GOD is this woman single-handedly setting back the cause of person-first language and respect for people with disabilities about a hundred years, at least.

Just go read about the latest hoo-ha about a doctored photo of baby Trig. Take special (oops, I said I wouldn’t use that word anymore, didn’t I?) note of the language in paragraphs 2 (written by CNN) and 4 (a quote from Palin’s own spokesperson). And then to put the blame on the Obama administration. Gah!

I have just one thing to say to you, dear Sarah…CLUE IN. You’re not doing your son any favors over here. Holding him up as an icon for poor, “suffering”, “special needs babies”. Get in the 21st century, honey.

Four Junes

It’s the middle kid’s birthday today. I’m having a hard time fathoming the fact that he’s now 3: officially a preschooler.

Kick me the next time I bemoan the fact that sometimes he seems to grow up so slowly, would you? Look at this:

2006

2007:

2008:

2009:

Happy birthday, Evan. We adore you, we really do.