I keep thinking about that New York Times blog post. You know, the one with the question. I have not, per Maya’s advice, gone back and read the comments on it. But I’m humbled, as usual, by the warmth and intelligence of the comments about it left here.

I keep thinking about that New York Times blog post, and also about the New York magazine article from a little while ago, the one about how unhappy so many parents are.

Really? I asked at the time. What did you expect? That being a parent would be easy? That you’d have tons of free time to hang out in bookstores – that is, in the sections with books you might actually want to read to yourself — like you did before you had them? Being a parent is hard.

Being anyone’s parent is really really hard, if you are doing it right. (Like writing.)

That includes parenting a child with Down syndrome. In many ways, it’s all the same. But in some ways, it’s different, and to deny the differences is, I think, to shortchange ourselves and out kids. I think about Annabelle’s experience in public school versus Sophie’s experience. There is no comparison. And that is just one arena of the dozens we all traverse.

That said, I often feel guilty for even writing a blog about my kid with Down syndrome. I mean, big whoop, right? So many times I whine about something and have to stop and remind myself how good I have it.

For one thing, I was able to have kids. (At one point I was very doubtful.)

Sophie is —  by and large, relatively speaking, and knock on a lot of wood — a physically healthy kid. (At least, she’s only had to have open heart surgery twice and so far, there’s no word of a third time.)

She is, as they like to say, “relatively high functioning.”

And, as a dear friend once said to me, “Everyone has something.”

I know I’ve told this story before on this blog — perhaps even more than once — but it bears repeating. For me, it goes back to the essence of parenthood, and even back farther to the essence of who we are, period.

When Sophie was about three weeks old, a friend I didn’t know very well at the time  (we were in the same book club) dragged me out of the house. She’s a teacher, and she told me some of her students had given her gift certificates to the spa at Royal Palms, a hotel in Phoenix and one of my favorite spots in the world. (Ray and I were married there.) Whether she really had gift certificates or not, this woman is incredibly generous (she is, as I type, making matzoh ball soup and a “Jello construction” for a mutual friend who just had surgery) and I didn’t know just how generous, that day I agreed to go to Royal Palms.

I dragged my tired, bedragged, scarred body onto a table and got a great massage, and afterward my friend and I wrapped ourselves in big, thick robes and sipped delicious tea, reclining in a lovely sitting area.

“You know,” my friend said, “I wanted to tell you something.”

I knew she had two kids — they were out of college, grown and moved away to fun cities, with cool-sounding jobs and cute pictures I admired on my friend’s mantleplace during book club meetings — but that’s all I knew. I figured these kids, like my friend (in my eyes, anyway) were perfect.

The “something” was some pretty heavy duty stuff. Both kids have serious medical conditions they developed as adolescents. There’s no cure. It’s life-threatening. Both have wonderful, happy, productive lives — with a great big scary face hanging overhead at all times.

“I told you that,” my friend said when she was done, “because you need to know that everyone has something. It’s just that with Sophie, your `something’ came earlier than my ‘something’ did.”

Think about it. My friend is so right. Everyone has something. We all do. Most of the time, you don’t even know what the other person’s something is. It’s not “worse” than your something, or “better.” It just is.

I am forever in debt to my friend for that advice.

Look, I know why people pose the “hard” question about Down syndrome. It’s because there aren’t many “somethings” you can eliminate in the 11th week of your pregnancy. And I think that while it’s cut and dried and perfectly acceptable to agree that having a kid with medical problems is bad, you’re not supposed to talk about how it’s harder to have a mentally challenged kid than a typical one. Particularly if the mental challenge inolves the propensity to make one a very happy camper.

Is it harder to have a child with Down syndrome? As Noan put it so well in a comment earlier today, “Personally, I don’t think it is a very interesting question.”

She made up a few of her own, then ended with an amazing quote from Stanley Kunitz that I’ll end with, too.

“One fears that the dynamics of modern society point towards the practical rather than the spiritual.  But I think there will always be individuals who will carry on  the great tradition of the prophets and poets.  I have such a fierce conviction about the value of existence, the importance of life, that I know there must be many, many others who feel the same way, and will always be here on earth.   And that gives me hope.”

If you have a spare minute and 37 seconds — and even if you don’t — watch this. It made my day. (Thank you, Deborah!)

A friend forwarded me the link to this piece today.

“I’m sure you’ve already read this,” he wrote. “But just in case.”

I hadn’t. Am I glad he sent it? I don’t know. It kind of pissed me off, to tell you the truth. And the more I think about it, the madder I get. The question is insulting, condescending, cute — should I go on?

To even ask the question, “Is it harder to have a child with Down syndrome?” is to imply that it’s politically incorrect to say, “Why yes, by golly, it most certainly is!”

Of-freaking-course it is. It’s harder. Some days, maybe not. But most, for sure. It’s also completely awesome to be Sophie’s mother. It’s a total privilege.

And we should be able to live in a world where both things are true.

All that said, I’ll admit that I completely get the question. I remember exactly where I was sitting when I told my dad I’d decided against the amnio.

“I don’t know, Ames,” he said in a gruff voice, then offered the only piece of advice I recall him ever offering me, my whole life — other than the time he got mad at me for ordering butter on my popcorn at the movies.

“Those kids are a lot of work. What about Annabelle?”

So yeah. I get the question.  I just (sort of) wish my friend hadn’t sent that link.

In an effort to end the week on a high note, I present one of my heroines (though not when she’s playing the Tooth Fairy on Yo Gabba Gabba), Amy Sedaris.

My only disappointment is that I will have to wait another several weeks for her forthcoming book, “Simple Times: Crafts for Poor People.”

If it’s anything like “I Like You: Hospitality Under the Influence,” I will be so happy. (The book features Sedaris photographed nude, covered in nothing but sprinkles and whipped cream; Sedaris’ party advice: fill your medicine cabinet with marbles to scare nosy guests with an avalanche; and Sedaris admitting she doesn’t usually use a measuring cup when cooking.)

This woman is so wrong. If you don’t believe me, go to her web site and check out some samples from the new book, which includes chapters titled “Coconuts,” “Sausages,” and “Crafting for Jesus.”

For the record, I don’t think you’ll be finding the project for your school’s next art auction in “Simple Times: Crafts for Poor People.”

It’s official. I have now seen it all.

Do you belong to the PTA at your kid’s school? Good for you. I mean it. I have more than one friend who’s even ascended to the presidency. I have great admiration for these people.

But I know myself. I don’t work well with others. Remember the opening of the movie Broadcast News, where they show the characters and titles with their future professions under them? Well, my character’s title definitely reads, “Future Alternative Newsweekly Employee,” which is code for “does not play well with others.”

So I’ve never been to a PTA meeting. Haven’t so much as set foot in the door. That’s not to say I haven’t tried to help out at my kids’ school. I have. (Though like just about everyone, I will freely admit that I could try harder!) My mantra is keep it in the classroom — do work for the teacher (no matter how menial, though I am afraid of the laminating machine) and make donations wherever I can.

In other words, avoid drama.

When Annabelle was in kindergarten, I broke down and agreed to bring food to the teacher appreciation luncheon at the end of the year. I stressed over my cut-up strawberries, pineapple and pound cake (which was meant to surround the chocolate fountain and no, I’m not making that up, that was to be the centerpiece of the table). I bought A LOT of fruit and cake — at least I thought I did — but as soon as I walked in the room, another mom with very long fingernails and way too much hoochey-mama going on for a Friday afternoon at school (not that I’m judgemental or anything) pointed a nail at my platters and said, “That’s all you brought?”

I was crushed. I renewed my classroom-only vow. I made friends with PTA moms who gave me tasks to do on my own. Things were cool.

When Sophie was in kindergarten, I made the mistake of responding to an email from a PTA mom (not one of my pals) who was soliciting ideas for how to spend funds raised at the school’s annual spring auction. I hesitated, then sent a long note explaining that I would love to see money go toward funding an aide for the kindergarten playground at lunch, since at the time (and probably still) there was just one “duty” (I hate that word!) assigned to watch more than 90 kids. As I explained, this is something lots of other school PTAs do.

When the list came out, it included ideas such as “Italian lessons” and “tours of the Arizona State University campus,” but no playground aide. My idea wasn’t even good enough to be considered as an idea.

OK, I get it. Vow renewed — again.

Another year went by, and then the notes came home earlier this month announcing that the PTA was looking for volunteers to coordinate art auction projects with each class. Hmmm, I thought. This is in the classroom. I’d be working with the teacher and the kids. It would be a nice way to donate to the school. OK, I’ll do it. I told both girls’ teachers that if they needed volunteers, I was available.

In the end, our beloved Ms. X (kindergarten teacher to both Annabelle and Sophie) was without a parent volunteer, so I signed up to a project in her class, too.

The email went out to all volunteers from the art auction coordinator, soliciting our ideas. Or so I thought.

Annabelle’s project — a hooked rug — was already underway with another parent, I was told; I emailed that parent and offered to assist in any way I could. “I don’t know anything about making hooked rugs,” she emailed back. “Do you?”

Turns out, the coordinator had assigned her the project. That seemed odd to me, but I didn’t think much of it til it came time to tell the auction coordinator what I had decided to do.

I spent a lot of time making a decision. These projects are tricky and I’m not super-artsy, and I know how hard it is to work with a group of two dozen kids even when you are not trying to create something someone will want to buy for a lot of money. So I solicited ideas on Facebook, spent hours researching craft web sites, even emailed a couple women who run art blogs (including my favorite, The Long Thread – and that woman even responded!) and finally, after several evenings, came up with an idea, one that’s near and dear to my heart. I felt really good about it.

Last night, I emailed the coordinator:

i think i’ve landed on an idea for mrs. z’s class. i love the idea of having the kids draw self portraits. this would be involve them doing line drawings of themselves. i’ll take the drawings, make iron on transfers and embroider each. it sounds harder than it is — i only have very basic embroidery skills but i have been doing this with my kids’ drawings and i think it turns out nicely. after i’m done with all the squares i will find a parent who can help me make a quilt from the squares. (i’m not capable of making a quilt, but i know i can find someone who is.)

The coordinator responded:

Good morning! Do you have an example of “iron on transfers”? We had a bad experience with this last year. And we have an embroidery project already from Mrs. [teacher's name] class. I have a folder of other ideas should you want to see it? Let me know…. Best regards, [Auction Coordinator]

I was a little taken aback, I admit. I certainly don’t mind input, but this seemed a little dismissive and, well, sort of mean. But, wanting to be a team player, I responded:

I have done about a dozen of these projects already, which is why I feel most comfortable doing this. The kids would focus on drawing self portraits; I would do the embroidery. Can you give me details on the other embroidery project so that I can be sure there is not a lot of overlap?

And then I left for work. When I signed onto my email an hour later, I had two messages waiting for me from the auction coordinator. (Note: These are just as she wrote them.)

Email #1

Good morning. It’s [another parent's name] using special paper for the background. The embroidering is over the top of the art paper. She has an example picture and a commercial sewing machine.

The husband/buyer of the “quilt with paper overlays”, last year was NOT HAPPY with the product he purchased with the heavy proding of the student. The opening bid of $50 was about $40 too much. Although we want collaboration of the students in some portion of the project…an artist/adult can make it worth buying; as well as bringing the child to observe Art not craft. I’m not being crabby but it was not pleasant. So, find a different way to use the line drawings. Best regards, [Auction Coordinator]

And Email #2, titled “Apology”

Good morning. My daughter let me know we should be Very Appreciative that you, well Known for Your Artistic Ability is helping us. So please don’t take insult to what I have said. I’m so passionate to upgrade this Art sense in our school and we have alot of Arizona Craft baggage people. Thank you for your efforts and don’t let me be a crabby old downer! Regards, [auction coordinator]

Upgrading from craft to art? At a school district that has no arts program whatsover, in a classroom filled with 7-year-olds, with a budget of $50? What sort of art does this woman expect the kids to produce? And who cares if the project isn’t perfect — really, are we expecting to purchase Picassos or trying to contribute to the school?

I am well aware that I can be difficult to work with, but I don’t see what I did in this case to deserve that big dose of nasty.

My first reaction — after okay, I’m offiicially done with this — was, “Wow, your elementary school-aged daughter had to tell you to apologize?”

Turns out, this woman is a grandparent at the school, which I learned 15 minutes later when another PTA mom called to say she’d heard about the fracas and begged me a. to not pull out of the project (too late, I’d already sent that email) and b. to not tell anyone what had happened.

Too late again. I’d already written the headline on this blog post. Frankly, I consider this a public service announcement. 

More than once, since we’ve been at this school — which is not in a hoity toity neighborhood, not really, certainly no one around here deserves to have a ‘tude — other parents have mentioned to me that they have felt left out, that they’ve tried to volunteer and been shut down or poo poo-ed. This just happened a week ago, at a birthday party.

“Don’t be silly,” I’ve told these parents, trying to stand up for the women in the PTA I know are good, kind souls, figuring they’ll prevail. “It’s just your imagination.”

Maybe not.

Ugh, I am all over the place today, even though I’ve scarcely left my chair. From e-mail (three accounts) to Facebook (four pages) to Internet (at least five pages open at all times) to a dozen or so Word files — back and forth, over and over and over, til bits of work are finally finished, giving new definition to the meaning of piecemeal. No peace, that’s for sure.

Then I opened an email from Noan, a favorite Mothers Who Write student, who suggested several of us click on Neil Gaiman’s blog. At first I marked the email unread, as I do with so many I mean to revisit and promptly forget, then went back and took her advice.

I’m so glad I did. As I watched the video I’ll post below, I realized I haven’t kept my hand off the mouse for four consecutive minutes all day.

“Trust dreams,” writes Gaiman. “Trust your heart and trust your story.”

To be honest, when I set out on my question-asking mission this week, I only had three. But I knew a fourth would come to me and sure enough, it did.

“Let’s see if you can both be dressed by the time I get out of the shower,” I called to the girls this morning, fully expecting that Sophie would ignore me and giving Annabelle 50/50 odds.

Amazingly, both were dressed — Annabelle even had shoes on! — when I emerged. Sophie had put on the shirt and skirt I’d left on the coffee table (the shirt was inside out, easily rectified) but when she turned to face me I realized she was wearing a full face (not just mouth) of lipstick. True, it wasn’t a really dark shade, and actually it matched the skirt nicely, but still.

Can I let my 7-year-old go to school in lipstick?

In the end we compromised and she let me wipe it off her cheek and nose. But it stayed on and around her mouth and really, I’m not sure I could have gotten it all off even if she’d let me try, given that I didn’t have three hours and a huge tub of Pond’s cold cream on hand. I don’t know how that lipstick (from a kids’ kit, I usually stick to lip gloss myself) fell into enemy hands. I devoted a Rubber Maid to “kids’ makeup” and have it tucked on a high shelf. Apparently a renegade lipstick was floating around the play room.

No more, I’ve confiscated it, and I felt really good about the fact that Sophie did not manage to take the American Girl catalogue or crying baby doll (the thing practically shrieks) with her to school, as she had hoped.

But she did head off with a full mouth of lipstick and a smug look on her face.

OK, so today’s question is about Annabelle.

Last week I asked her fourth grade teacher what I thought was an innocent question: Is Annabelle in the lowest math group?

Turns out, that’s a big no-no. How did I get this far without realizing it? I guess it’s because the question I’ve always wanted to ask up to now is, Is Annabelle in the highest reading group? I never did, because a. that seemed untoward, sort of braggy, and b. I was always able to figure out the answer.

And I’ve pretty much surmised that she’s in the middle group for math, which is just fine. But I panicked last week, worried that maybe I’ve been so focused on Sophie that Annabelle had slipped when I wasn’t looking. So I fired off this email:

i’m curious to know where annabelle is, in terms of math. is she in the lowest group? our goal for her is to be happy and to learn but not to make school a pressure-cooker, but i am curious about math — if she’s in the very lowest group i’d like to consider meeting with the teacher [this note was to the homeroom teacher, not the math teacher] and discussing what we can do better. (i could be completely wrong about this — to be honest i’m basing it on some of the other kids she mentioned are in math with her, which i know can be a dangerous way of trying to guess!) if she’s in the middle, i’m totally cool with that. in any case i won’t try to move her or cause trouble, i just want to be sure we’re doing what we can on our end to ensure some success. (i’m terrible at math so my expectations aren’t super-high!)

I got this back:

Thank you for your support. Annabelle is working right on grade-level in math. I’ll have more information after tomorrow when we take our Fall NWEA in math, but our first quarter pre-assessments shows her to have a great foundation of skills for the year. There could be a chance throughout the year as we continue to assess that she shifts into other groups based on her need and ability level, but it truly does depend on how well Annabelle performs on pre-assessments for each unit. I appreciate your willingness to be open about her placement and understanding.

OK, that was a wholly unsatisfying answer, if you ask me. I ran this by a teacher friend and she made a face. No, she said, you are not supposed to ask. (This is a woman I really trust.)

I changed the subject, embarrassed, but I still wonder why it’s such a BFD. She’s my kid — isn’t it my business?

Maybe mentioning my guessing criteria was not the swiftest move. Between that and the nasty note I wrote on the Declaration of Independence permission slip and the even nastier note I wrote about what BS the Anti-Bully Pledge is, I’m sure I’m real popular with this teacher. I better get over to the school and do some Xerox penance.

Yesterday was not Sophie’s best day.

It wasn’t mine, either (I won’t bore you with details) but I looked pretty good by comparison.

“It was not a good day,” Courtney told me when we met in the parking lot before piano lessons. “No one said anything to me, but I overheard something about a fight she got in with [another little girl with Down syndrome] and she and Sarah were flicking each other.”

Isn’t that what you’re supposed to do to your BFF when you’re 7? Flick each other? Ugh.

“Anything else?” I asked, scared now, as she handed me Sophie’s backpack, a huge roll of white butcher paper and a copy of Judy Blume’s “Tales of a Fourth Grade Nothing,” which I figured had made its way from home to Courtney’s car.

“Yeah, she got in trouble in music therapy for drawing a penis,” Courtney said, shoving the stuff at me and sprinting for her car. “Happy Tuesday!”

Before Annabelle’s half-hour lesson had ended, Sophie’d explained that she’d “punched” the other little girl with DS in the stomach, and actually had stolen her teacher’s copy of “Tales of a Fourth Grade Nothing.”

I’m not sure if any of this is true, but I wasn’t taking any chances. I told her she’d have to apologize. She nodded, sucking hard on her thumb.

Later, after Sophie had written three apology notes (we’ll write to the music therapist before next week’s session, if there is one) I noticed that her math worksheet and math homework (from last Thursday) were still in her folder in her backpack. It took half an hour just to do the worksheet. Ugh.

“Why didn’t you turn this stuff in?” I asked.

“I forget,” she told me.

One day last week, Sophie went AWOL from PE — they’re still not sure what happened, whether she was with a “buddy” or not when she ostensibly left for the bathroom, and showed up at Annabelle’s classroom, which is up a huge flight of stairs and nowhere near PE — or the bathroom. Annabelle later informed me that’s been happening a lot at lunch.

And this is only the stuff I’m catching wind of. Things are melting down. Are the Salad Days over, or was yesterday just a really bad day? (And last week a not so good week. And so on.)

This morning I unrolled the huge piece of butcher paper I’d left on the dining room table, and there it was — the penis drawing. (Not sure if you’ll be able to make it out in the photo, but really, it’s hard to miss — and I did take comfort in the fact that she’s obviously not drawing from memory, at least it doesn’t look like it.) I shoved it in the recycling.

Today we’ll start fresh, like we always do. But I wonder if this acting out is because school’s just getting too hard for Sophie. Does she need more help? What should that look like? What would it look like if school budgets weren’t an option?

What do you think?

Watching my mother instruct Annabelle to blow a party horn at our family dinner last night — in lieu of Rosh Hashana’s shofar – I was reminded yet again that I really have to get on that whole Jewish education thing.

But before that (and apologies, Higher Being, if you do in fact exist) there are more pressing matters. In fact, I’ve got a (short) week’s worth of questions, so even though we aren’t supposed to ask the Four Questions til Passover in the spring, I’m going to ask them now.

You, GIAPH readers, are my kitchen cabinet. And I need some advice.

First up today is a rather specialized topic: The Thyroid.

It’s barely 6 a.m. here, hours til I can call the cardiologist — which I fully intend to do — to share the information the endocrinologist gave me Friday. From what that doctor said, Sophie’s thyroid issues are borderline. He suggests medicating now because, as he put it, what the heck, her body will simply get rid of any extra thyroid medication it doesn’t need.

Really? I asked. Then why don’t you just give this medication to people with Down syndrome from birth on, since so many develop thyroid problems and you’re telling me that unchecked, they cause developmental delays this population can ill afford?

The doctor — who runs the practice at an esteemed local childrens hospital here — couldn’t really answer that, even in front of the two students he was clearly performing for. (Yeah, it got crowded in the exam room, with five of us. And yeah, as you can tell, I’m not this guy’s hugest fan at this point. For one thing, don’t hug me, doctor. We just met.)

Anyhow, I do like Sophie’s cardiologist, so we’ll chat about whether this medication is a good idea for a kid who’s had open heart surgery twice and still has underlying cardiac issues. But meantime, anyone have any advice/personal experiences to share?

Here are the facts, sent to me by one of the doctor’s students (lack of command of the English language is all hers):
TSH = 6.73 ( ref. range 0.5- 5.4 mU/L)

Free T4 = 1.1 ( 0.9- 1.6 ng/dL)

Based on 2 blood determinatios that showed elevated TSH, we are recommending sophie to start on low dose thyroid hormone ( Levothyroxine 25 mcg daily).