This is a question I’ve pondered before, and of course I’m reminded of it here at the Magic Kingdom., where every other geeky dad is wearing a tee shirt that says, “I’m Grumpy because you’re Dopey.”

I tried to talk Ray into the Tiki Room Hawaiian shirt, but he didn’t really seem that into it, so I think I’ll skip the $74 expenditure.

Ray insists Dopey does not have DS. He says there’s evidence of drawings by the Mesopotamians (who predate Snow White and friends by a lot) and those drawings actually depict features associated with DS, whereas Dopey doesn’t look like he has it at all. I say that’s just a matter of opinion. He’s got it.

Just imagine where Dopey would be today if he’d had early intervention services.

And yes, I’m punchy from 12 hours at Disneyland. Good night.

The girls just rushed the kitchen, both wearing embroidered, sparkly, Mickey-eared princess hats.

“Perfect! Let’s pack those!” I said to Ray, anticipating at least a $75 savings. We’ve never gone to Disneyland at such a busy time – spring break for many Arizona schools, hopefully not all the Southern California ones — but maybe the crowds won’t be so huge because people are staying home.

I figure we better go one more time, before the journalism industry crumbles completely. Plus, we’ve gone every year for the past five years. Sophie was way too young the first time — I have a rule about not taking kids to Disneyland before they’re 3. I broke that rule the second time; she was just over 2 and a half when we took her. Here’s a version of a piece I wrote about that. We’re in a hurry and I can’t find the original, so here’s the shortened (which is probably just as well) version that appeared on Austin Mama: http://www.austinmama.com/badmomfive.htm

The talk about Down sydrome in the house — overt talk, anyway — has died down, with the science fair projects completed (two First Place ribbons, thank you very much) and put away.

But I keep thinking about something Annabelle mentioned casually, when we were talking about Sophie, in the course of her research.

“A lot of people think Sophie’s a midget,” she said, in that matter-of-fact way only a second grader can achieve — and mean.

“Does that bother you?” I asked. (That’s all I could think of to ask — that was appropriate, anyway.)

“No, I just tell them she’s not,” Annabelle replied.

It’s an innocent question, and not a dumb one, considering that Sophie stands literally half as tall as many of her kindergarten classmates.

Still.

“Why are you crying?” Ms. X asked. “Because Sophie’s doing so well?”

I couldn’t answer. We were huddled around a tiny table in the kindergarten classroom yesterday for Sophie’s parent/teacher conference. I pretty much knew what to expect when I walked in, but still, I hadn’t seen all the test results. The evidence.

Sophie’s kicking butt. No, Ms. X doesn’t think she’ll ever learn to read phoentically (it’ll be more through memorization, which luckily she’s good at, but she will read) and no, I didn’t ask how she’s comparing with the other kids. I guess I”m growing up a little, in that regard.

But really, by a lot of measures, even I — the nervous, Chicken Little mother I am — have to admit my kid’s on her game. Sophie’s mastered every sound, she can recognize ever letter. She can count to 57 and she wrote her numbers 1 to 20 without prompting (and you can recognize most of them). She can recognize a penny, nickel, dime, quarter and dollar bill. She knows a lot of sight words. Her writing is slowly getting more legible. She follows directions much better than she did at the beginning of the school year. Her Third Quarter self portrait (she’s near the bottom in pink, I’m not sure what the rest is — tropical landscape?) was done with no prompting, and you easily can see a little figure. Her little figure.

Maybe it’s true; maybe she is ready for first grade.

“There’s nothing more I can give her in kindergarten,” Ms. X said, wiping away her own tears. “She’s amazing.”

A couple weeks ago I wrote that losing Ms. X was like getting the security blanket ripped away. Yesterday it felt more like falling off the edge of a cliff, with Sophie in my arms.

The first grade curriculum is night and day tougher than kindergarten. And without the right teacher….

There might be a parachute.

The scuttlebutt around school is that there’s a teacher list out there for next year. Ms. X will still teach kindergarten. But the current special ed teacher — an incredible woman who already knows Sophie and certainly understands the challenges of Down syndrome — has supposedly been assigned to teach first grade.

That’s not to say we’re guaranteed the pick of teachers. Far from it. But of all the things I could pitch a fit over — and the list includes demanding an aide for Sophie, keeping her back a year in kindergarten, getting someone to spend 5 minutes making sure she gets from the cafeteria to the playground safely at lunch — this is the one I feel the most confident I could actually score without legal action or bloodletting.

“Wow, things really fall into your lap,” a good friend and fellow mom said, when I told her about it.

I guess so. Ms. X had her own way of looking at it.

“The stars are aligning for Sophie,” she said.

A friend of mine once insisted that Sophie looks a lot like Kate Hudson.

While I took that as a big compliment (who wouldn’t?) it made me feel weird. Sophie’s not supposed to look like anyone who doesn’t have Down syndrome. She’s not even really supposed to look like Ray and Annabelle and me, although I catch flashes from time to time.

I do know what my friend means about Kate Hudson, particularly in certain pictures.

When she was born, the nurses said her features were “mild,” and explained that meant she’d be high functioning. I now know that’s all hooey — no one knows for sure at that point — and I look at her baby pictures and toddler pictures and the school pictures on the wall and say, “OK, that’s a kid with Down syndrome.”

A darn cute kid, a beautiful little girl, and it’s not like she looks exactly like every other person with DS out there, but yeah, she’s got it. And five-plus years in, I’m okay with that.

In high school, I knew Jewish girls who would try to “pass” as non-Jewish. I’ll admit, even now, it’s not so bad to have a day go by without anyone mentioning that Sophie has DS, just letting her be her own little person. And yeah, sometimes I’ll fantasize that no one can tell. Then an ancient lady comes up to me in the pen aisle at Office Max and nods at Sophie and says, “I had one, too.”

Then the woman tells me all about how her son went to the same elementary school Sophie goes to now — only about a million years ago, judging by this woman’s obvious age and the stories she’s telling — and how he once decked a kid who called the special ed room the “retard room.”

Good for him, I told her. And I meant it. But really, couldn’t I have a DS-free Sunday afternoon? I was exhausted. On a lot of levels.

Back to Kate Hudson. I can see it in some older pictures, I wish I had them here so I could post them. I’ll have to dig them out. 

The other night, I took the girls downtown to a couple of gallery openings. They were good sports in rooms full of red-wine sipping grown ups. Annabelle successfully interpreted several pieces of art (confirmed by a show essay) and Sophie was good, though I did have to tell her, “Only touch with your eyes.”

I won’t do that again. I think she actually managed to make eyeball contact with a painting at one point.

We were en route to a store called Devious Wigs & Things (really! check it out: www.deviouswigs.com) when we happened upon a new studio space, occupied by a photograher I know. The girls rushed in and made themselves at home. The photographer’s studio-mate stopped and at stared at Sophie.

“She’s BEAUTIFUL,” he said, staring some more. “Check this out — I was just looking at some models who have the same bone structure in their faces.”

Oh god, I thought. Really? What will this be about?

He pulled up a couple images of beautiful models. “See?” he asked.

“Yeah,” I answered, feeling Kate Hudson-awkward. We left before I could figure out if he figured out about Sophie. I wonder if, once we were down the street, the photographer I know said, “Hey, dumbass, that kid has Down syndrome. Couldn’t you tell?”

Maybe he could. Maybe he couldn’t. Maybe it doesn’t matter.  

The last time I used a sewing machine was, I believe, in junior high. It didn’t go well. I did okay with the cinnamon rolls made out of Pilsbury pop and fresh dough, but the sewing portion of Home Ec just wasn’t for me.

That’s going to change. Soon, sewing will be for me — rather, for Annabelle. (And Sophie, if she’s interested.)

The sewing machine arrived last night. I think it would take me forever to clear out a loved one’s things, but I guess it’s been cathartic for my father in law, who brought over several items last night when he came for dinner: a Kokopelli-printed tote bag, a brand-new leather purse and a half-gone container of bath beads (for me); a Minnie Mouse watch (for Sophie); and the following, among other things, for Annabelle: the digital camera he’d just given my mother in law for Christmas (that made Ray really sad); the pearl/crystal crown she wore on her wedding day, covered in Saran Wrap with the bobby pins still attached (that made me really sad); and her sewing machine.

(That scared the shit out of me.)

Thank goodness for Gilda. I often thank goodness for Gilda. Everyone should have a set of self-described former punk rockers as parents at their kids’ school.

The beauty is that Gilda’s girls happen to be the same ages as my girls. I wish I had the time today to describe to you just how cool this family is, but for now I’ll just have to say that Gilda understands the virtues of (among other things) carnival chalk and sequins and, overall, I’ve never seen a better accessorized family, right down to their black standard poodles.

But it’s not about the trappings, really it’s not, though Gilda understands the value of trappings in a very satisfying way. These are just good people.

And so when Gilda heard that Ray’s mom died and asked what they could do, I said, “Come over.”

She did, and she brought the whole family (minus the poodles) and a huge basket of sewing materials.

Gilda sews. She has a sewing machine and she’s not afraid to use it. To me, that’s really something, since I was so scared of my Kitchen Aid mixer I gave it away. (It took up too much counter space, okay?!)

Last week, Annabelle found a project in a craft book. The kind of project I’d have started with her but never completed — not without my mother in law’s help. Luckily Gilda came over, so not only did the project (purses made out of old jeans and pants, super-easy, a great kid craft – well, it was with Gilda’s help!) get completed, it was done with panache.

By the end of Saturday night, each of the four girls had a purse she’d decorated, and Gilda had promised to teach us how to use the sewing machine I didn’t expect would arrive quite so soon.

I’m going to have to shore up my sequin supply.

Ray sneezed. Several times.

“Do you have any Kleenex in here?” he asked, looking around the car. I grabbed my purse and started digging, handing him two — including one that was definitely not used.

From the back seat, Annabelle said, “Grandma always told me to always keep a tissue in my pocket.”

The car was silent for a minute, and I wondered, have I ever given my kids such valuable advice?

And then we were at school.  We piled out and the girls rushed the cafeteria, ready for the annual school science fair.

I love the science fair. The kids really get into one another’s projects, and the judges’ decisions aren’t made til the day after, so for that night, at least, everyone’s a winner. Last night when I tucked her in, I asked Annabelle if she had fun. She beamed. “I saw people looking at my project,” she told me, adding that she told one of her friends, “I have a fan club!”

This was Sophie’s first year. I’ve never heard of a school with a science fair that starts in kindergarten. When I was in school, there was only a seventh grade science fair, and that seems to be the norm among others I’ve talked to.

But at this school, any kid, K to 5, can participate. It’s voluntary, which is nice, because these projects are exhausting. Mostly because of the balance. You want your kid’s project to be good, but you also want the kid to do it all herself.

Of course, mostly the parents do them and pretend they didn’t.

Last year, Ray and I actually high-fived when we finished Annabelle’s science fair project. She got a first place ribbon (everyone gets a ribbon — you’re in the first, second or third place group) but it was a hollow victory.

This year, I swore it would be different. Sophie did need some help, and I drafted Courtney, one of our sitters, because a. I waited til the day before the thing was due and Ray was out of town; and b. I don’t know how to use my hot glue gun and I’m quite sure that while she’d love to try it out, that’s a science experiment we don’t want to try with Sophie.

So Courtney helped to glue and glitter and most important, mastermind. She’s a special ed major and really “gets” Sophie, so she had some great ideas on putting together Sophie’s rock collection. Sophie wrote the names of the rocks herself, traced the rocks in her “log book” and wrote a “report” what she liked about rocks. (Rocks are “cool”, “awesome” and “shiny”.) My most significant contribution was the title: “Sophie Rocks”.

And then there was Annabelle. That kid. My heart bursts. We’d decided on a fossil collection, but when the idea of changing the topic to Down syndrome came up, she jumped at it. As I think I wrote last week, Ray wasn’t so sure about that, and even asked, “Will Sophie have to sit in the cafeteria for a week?” (The projects are displayed all week, culminating in last night’s fair.)

But he played along, and before he left town he explained chromosomes to Annabelle. Thank goodness, since the aforementioned kid books we have about Down syndrome weren’t as much help as I’d hoped. (I never did find my copy of “My Friend Isabelle,” and even that one doesn’t get into science.)

Annabelle titled her project “Up Down syndrome”. Since this was a “demonstration” rather than a “collection” like Sophie’s, she was required to create a model. Luckily, Annabelle did not ask if Sophie could be her model. 

(In fact, she asked me for a photo of Sophie, but she tastefully glued it inside her report. I’d had uncomfortable visions of poster board covered with photos of Sophie, which I was prepared to let happen, since this was Annabelle’s project.)

For her model, Annabelle created a karyotype — a design of the 22 chromosomes of a person with Down syndrome, minus the 23rd, which determines sex.

We discussed making the chromosomes out of yarn, but I stumbled on some Wikki Stix in the craft drawer (check them out: www.wikkistix.com). Annabelle made perfect chromsomes out of them, including the noteworthy 21st. I Super-Glued them down (something else I don’t want to see the under-12 set experimenting with).

Then came the report. Here it is, in its entirety, as she wrote it:

“What is Down syndrome”? You may ask. Well I will tell you. You see, if you have Down syndrome, you have one extra chromosome (which is a thread like looking thing that tells your body what you look like and other things.) in your body. Which causes problems. See, I can’t really tell you why it causes problems. Because scientists have not figured it out yet. But I know that I can tell you lots of other things about Down syndrome! When you have Down syndrome you look a little different from every body else. And it takes a little longer to learn as well as you and me do. But even though they look different, it doesn’t mean that you can’t like the same things and be friends. I even know someone that has Down syndrome! And I know her really well because she is my sister! Her name is Sophie. I hardly notice Sophie even has Down syndrome. She knows lots of cool and elegant words like “I think not!” She really cracks me up! And Sophie has lots of friends in kindergarden! And all of her friends like her alot! Sophie has special therapies to help her up! She has a great life! the end

I wanted to write about the science fair today, or maybe how I’m mad at the PTA, but I figure it’s best to get all the really sad stuff off my chest now.

The bad pun’s intended, sort of. These days, it’s all about lungs.

For a while, in our house, it was all about hearts. Sophie had heart surgery twice before she was five. I’m not a religious person, but I looked for messages. The morning of the first surgery, when Sophie was four months old, they put us in an exam room — more like a holding cell — in the surgery prep area at Phoenix Childrens Hospital.

Did you know there’s an entire industry devoted to signage and design in hospitals, and, particularly at childrens hospitals, art? I walked into that tiny room and there on the wall was a drawing of a little girl holding a big, bright red heart.

The tears I’d fought back all morning welled up. I knew who the artist was before I looked: a woman named Rose Johnson, whose work for New Times I liked so much I commissioned her to do the artwork for our wedding program.

It was a sign. So what do the events of the last year mean?

Last May, my dear friend Cheryl broke the news that her longtime companion was in the final stages of lung cancer. In June, my mother-in-law received a similar diagnosis. In August, my grandfather drew his last breath — days later than he should have, because someone had turned the oxygen up too high for a 94-year-old man who was supposed be in hospice.

And in January, Jordan Sterling died. Growing up, I always sort of knew who the Sterlings were — the kids were a little younger, went to different schools, but our moms took ballet together (really) and we had mutual friends. Phoenix is not a large place, at least it wasn’t back then.

When I moved home, I worked for years with Jordan’s stepmother, Terry Greene Sterling, now a very close friend and mentor. So I heard a lot more about the Sterlings. Mostly, I have to admit, about their health. At my wedding, Terry wore a bright red suit and read a lovely, funny piece she’d written about how Ray and I met. (She introduced us.) Then she had to rush off; Jordan was in the hospital again.

There are three Sterling kids. Two were born with cystic fibrosis. I’m honestly not sure how vigilant the testing is these days for the genes that match up and give it to your baby. Thirtysome years ago, I think it was non-existent. So the Sterlings had no idea, til all three kids were born (the eldest is the one who doesn’t have it) that two had it.

Cystic fibrosis is a death sentence. The fact that Brooke and Jordan made it to their mid-30s is a testament to medical science, their families and their own incredible strength. The two took different paths, which I find fascinating. (You can read my friend and former colleague Megan Irwin’s story about the family here: http://www.phoenixnewtimes.com/2006-08-10/news/borrowed-time/)

Despite their disease, both Brooke and Jordan have had amazing lives, filled with friends and adventure, but also focused a lot on health. Brooke is all about the natural — she runs a yoga studio, sees a naturopath, worships her body. Jordan took the medical route: he had a double lung transplant years ago. For a while, it worked. But the anti-rejection drugs shot his kidneys and I don’t more detail than that other than the guy had something like 15 hospitalizations in a year. He died still hoping for a lung/kidney transplant.

At the funeral, I couldn’t look at his mother. 

The night Jordan died, Terry left me a voicemail I heard right before bed, and as I tried to go sleep, I couldn’t get the thought out of my head: How could you live with yourself, knowing you’d brought this child — these two children — into the world with this horrible disease that would ultimately, quite literally, smother them?

And then, like a flash of lightning (really, I know it sounds dramatic, but that’s what it was like) I thought, “SOPHIE.”

My — our — situation isn’t so different.

No, Sophie does not have cystic fibrosis. And yes, I know, I’m opening myself up for attack, for daring to question the decision to bring a baby with Down syndrome into the world.

But this is not about her brain. So often, people think that’s all it’s about. What I’m thinking about is her heart. We were so lucky the doctors were able to fix it — twice. There could be a third time. And what about the other risks? Sophie was home the past two days with a fever, and I can’t say I didn’t stare at her yesterday and wonder, “Leukemia?”

(She’s fine today.)

A lot of days I stop and ask myself, “What if I brought this amazing little person  into the world and she dies an early, painful death because of my decision (or lack thereof)?” 

How could I live with myself?

But really, I think, the bigger question is this: How can anyone ever have a baby and live with all the potential consequencesthat will follow that person around his or her entire life?  

Maybe it’s best to take a deep breath and focus on something else, like being mad at the PTA.

I have very sad news.

Ray’s mom Pat — my mother in law, the girls’ beloved grandmother – passed away Sunday. She had lung cancer, and it had spread to her brain. So while this was not entirely unexpected, it was very sudden. She was only 64.

(I feel almost guilty waiting till now to tell you; the illness has to some extent set the tone in our family since June, and it was something I couldn’t share on the blog — there were some people Pat didn’t want told.)

Too sudden for Ray to be by her bed. Too sudden for me to write her the letter I vowed to write last week when she started having trouble breathing to tell her all the things I wanted to make sure she knew about what a wonderful person she was. (Like all of us, she was complicated. But as I said to Ray as we were falling asleep, the night it happened, “Your mother meant well. And you can’t say that about everyone.”)

Too sudden to warn the girls, and let them say their goodbyes.

That will haunt me for the rest of my life, and my fear is that it will haunt the girls — particularly Annabelle — as well.

I always got the feeling that with Annabelle, Pat was starting over, creating the perfect relationship after a lifetime of relationships that hadn’t been so swell.  Hey, we’d all like to have that chance, wouldn’t we?

And I’ve gotta say, if she made any missteps with Annabelle, I didn’t see them. From the moment she was born, Pat gave Annabelle her undivided attention; bought her things but didn’t spoil her; fostered mutual loves (of sewing, in particular, and even vegetables) and let her know above all that Grandma loved her.

At times, I’ll admit, it was too precious for me. I wasn’t crazy about it when, at 3 or 4, Annabelle came home announcing that Grandma had told her she was her best friend. But I’ll also admit that maybe I was jealous. (With Sophie it was more complicated, and that’s all I’ll say for now.)

We never told Annabelle that Grandma was very sick. She knew she was taking medicine that made her lose some hair. She had to know from looking at her that Grandma had changed from the steroids that puffed her up, the radiation that burned her chest. But Pat was careful to hide her weakness from Annabelle, to parse playdates to manageable bits and reserve her strength for the occasional overnight.

Annabelle never asked a question, but in that way that old souls know, I think she knew, although the look on her face when we told her yesterday is something I will never forget — and never wish to remember.

When I heard Sunday that Pat had been moved home to hospice, I knew we had to tell the girls, and take them to say their goodbyes. Although no one said it — I don’t think anyone knew — there wasn’t time. She passed away within hours.

Just Friday, two days before, she was joking and laughing in her hospital bed, planning for a radiation treatment scheduled several days away as my father in law dug into the Thin Mints I brought.

“Give me a hug,” she said as I was leaving. Even a hug was too much effort, setting off the buzzers on the oxygen monitors. “You smell so good,” she said over the beeping, “I could hug you forever.”

And that was it.

I’ll serve the girls chocolate pudding (Pat’s favorite) from the parfait dishes she gave me for a wedding shower gift, and we’ll plant her favorite vegetables and even a tree, and add to the shrine we started yesterday on the mantle. I even promised to learn how to sew.

But nothing will bring Grandma back.

The last day the girls saw Pat, we got dressed up and took her to afternoon tea at the Ritz Carlton, as a late Christmas present. The girls sipped lemonade from blue and white porcelain and everyone ate too much chocolate. Sophie and I looked for fairies in the lines in the marble in the Ladies Room and at the end, the girls danced to the music from the grand piano in the lobby. Even Pat twirled around a few times.

It was a perfect afternoon. Even if it’s not true, I’m going to tell myself that that’s how Pat would have wanted to say goodbye to the girls, if she’d been able to choose.

And maybe someday Annabelle will decide that was a pretty good way to say goodbye, too, if you have to say goodbye. I’m going to have to tell myself that, as well.

Last night when I tucked her in, Sophie pulled her thumb out of her mouth and whispered, “Grandma died. I think about her.”

It’s going to take us all a long time to process this.

In the past week, Annabelle has talked about (and, I’m guessing, thought about) Down syndrome more than she has in her entire 7 and a half years.

The science fair project is due tomorrow (don’t ask if we’re done — though we are finished with Sophie’s rock collection, entitled “Sophie Rocks”) so I’m guessing the conversation will slow after that.

It doesn’t bother me, but it is a little exhausting.

It’s fascinating, watching her process it. I don’t know how the “final report” will turn out for the science fair, but last night Annabelle worked on a drawing — a family portrait — entitled, “Ahh…the life of…Down Syndrum Sister.”

It depicts the four of us, lined up on a ski slope (Annabelle and Ray went for her first time recently). Annabelle’s saying (I’ve corrected spelling here), “Wow! Steep!”, I’m giving her advice (as I don’t ski): “Keep it steady,” and Ray’s warning, “Be careful.” Sophie’s at the end, clearly about to fall, yelling, “Mom! Dad! Help! Help!”

Here’s the drawing:

I gently suggested it might not be appropriate for the science fair. (What IS appropriate? Annabelle wants to include a picture of Sophie. I think it’s ok if it’s not front and center, but tucked away a bit. We’ll see how things fall out tonight.) So she addressed it to Sophie and left it in her room for her.

This morning at breakfast, Annabelle casually mentioned that a lot of “people” (translation: kids at school) think Sophie is a midget. We talked for a while — she said that didn’t bother her at all — and Annabelle read a new kid book on DS (this was the worst so far — the author purports that Down syndrome occurs when you have “an extra gene”) and then Annabelle looked a little exhausted herself. It was clearly time for a break, and she gave herself one.

She and Sophie started tickling each other, cracking themselves up, and Annabelle had one more comment to make on the heavy subject: “She sure is different but she still is ticklish.”