Stop the presses. It’s raining.

Actually, at the moment sun is pouring in through the blinds in my office, but I can see some dark clouds. We’ve had inches and inches of rain in Phoenix this week, something our streets — and our psyches — just aren’t prepared to deal with.

Last night Ray and I watched the local news, and he finally flipped the channel after 15 minutes straight of stories about the weather.

The rain is big news in Sophie’s world, as well. Today she donned her bright red slicker and brought (appropriately, I thought) a stuffed duck — at least I think it’s a duck — along to school.

And I got this lovely note from her teacher last night:

We did an impromptu descriptive writing piece today based on the weather. I had the kids (during a non-windy moment) walk slowly in their raincoats to the computer lab and back observing the rain with all five senses. Then, we came back in to complete a graphic organizer on it. Sophie saw huge raindrops, heard wind from a storm, smelled wetness, tasted…(my favorite) chocolate- and specifically chocolate mint, and she felt chocolate as well. “Sophie,” I asked, “Tell me more about how the rain felt like chocolate?” She gave me such a smile, “like cold chocolate ice cream.” I loved it…so descriptive and delicious to boot. I know what I’m having for dessert!

Last week, New York Times blogger Lisa Belkin posed the question, “Should Down syndrome be cured?”

I posted a link to her piece, but I didn’t fire off a response. I needed to give the whole thing some thought, I figured. This is fundamental. 

The truth is that I will think about this for my entire life and never have the right answer.

But as it turns out (and as the ever-wise starrlife observed), Belkin wasn’t being fair when she raised the question.

Belkin was referring to research at Stanford University into drugs designed to boost memory in people with Down syndrome.

I know about that research — or, at least, research related to it; I actually visited Stanford a few years ago, and met with one of the doctors doing it. He was very nice (I’ve written about this a bit before on GIAPH) — showed me a power point presentation, lowered my expectations significantly, then asked if I knew anyone with a lot of money who would like to donate to his research efforts.

After I spoke with the doctor, he let me tour one of the labs (I was disappointed that they wouldn’t let me see the mice they’d managed to “give” Down syndrome, but I guess with PETA around you can never be too careful) and another very nice man introduced me around to the researchers. I showed them pictures of Sophie, who was then about 2, and the very nice man led me to the window and pointed out a row of trees, just outside the lab.

“Those are ginko biloba trees,” he said. “If you eat the fruit, it can boost your memory. Some of the parents of kids with Down syndrome pick the fruit and give it to their kids.”

I got the message loud and clear. No super-brain drugs for Sophie — no time soon, anyway.

OK.

I left the lab and stood blinking in the fall sun, then strained on my tiptoes to pick a piece of ginko biloba fruit, which I wrapped in a Kleenex and brought home. It’s sitting on the windowsill in my office, next to a bottle of “pearls of wisdom” my friend Christa gave me for Christmas two years ago.

With all due respect to a far more successful journalist, Lisa Belkin started the wrong discussion. But really, I can’t imagine that there would be much debate over whether it’s a good idea to give people with Down syndrome memory-boosting drugs. It’s not like it would cure a genetic condition or, I’d bet, even fundamentally change a personality. It would just make life a little easier. And it’s not even like these drugs are available now; the recent study Belkin wrote about confirms that.

What a ho-hum discussion.

I’m no scientist, but I think I can safely say that there will never be a cure for Down syndrome — not once a person is born. Yes, you can have an abortion and avoid ever having a kid with Down syndrome. There’s your “cure”.

And I’m not saying you should or shouldn’t do that, though I’m beyond damn glad I didn’t. I truly wish I believed in God, so that every day, I could pray to him my thanks that I have Sophie.

And therein lies the rub. I don’t want Sophie to have Down syndrome, and it’s not (not really, anyway — not only, at least) because of her intellectual disability.

The truth is that the ginko biloba — and all it implies — is the least of my worries, as a parent of a child with Down syndrome. I learned that when Sophie was 5 days old and the doctor announced she had a hole in her heart. She’s had open heart surgery twice — so far.

I catch myself staring at Sophie a lot. Less and less, it’s about her “funny” features or funnier behaviors. It’s about leukemia. I won’t look at the statistics, I don’t want to know the exact figures, but I do know that people with Down syndrome have a greater chance of developing leukemia. Recently, I learned it’s the same for diabetes. And a lot of other physical maladies I don’t want to know about.

It’s not that I don’t want a kid with intellectual disabilities (although trust me, it took me a long time to be able to say that honestly, and there are days when it’s still a bit of a lie). It’s that I want her to be around, and healthy. I don’t want her to suffer. I don’t want her bald in a hospital bed. I don’t want her to die.

It’s a lot easier to have an intellectual debate over how people with cognitive challenges fit into our society than it is to have the heart-wrenching discussion about the realities of my kid’s physical health.

A pill to “cure” Sophie’s heart from springing another leak? A vaccination to keep her from getting cancer? Bring it on, people. Bring it on.

Do you ever notice that a comment can be far wiser than the blog post that prompted it?

I have, and more often than not, that comment has come from Elaine. We have nothing in common, really, other than daughters named Sophie (that’s how she found GIAPH a while back) but in getting to know her through her blog, I often wish we lived in the same city, that our Sophies could be playmates, and that I could take one of her classes (she teaches American Studies — my college major).

The other day, I wrote about my Sophie’s “thermostat” — how her emotions tend to run either too hot or too cold. Elaine had a terrific, thought-provoking response:

One morning when I worked in Hong Kong, I asked the department secretary, “How are you?”

“I already told you yesterday,” she shouted at me. “I’m fine. I was fine yesterday, I’m fine today, and I will be fine tomorrow. Why do you English professors keep asking the same question?”

“I guess we assume that people’s moods may change,” I said, or some lame substitute for that. There is no “how are you” in Cantonese. There is a bewildering variety of other greetings, actually: “where are you going” and “have you eaten rice yet” and even, “so, you’re good, right?” but no “how are you.”

Nellie, the Cantonese secretary, told me that she aspired to never have her mood change. No ups, she said, would mean no downs. She believed that should be everyone’s goals, and thus, she though, “how are you” was a stupidly boring question.

I’ve been thinking about it ever since. Meditation teachers try to teach equilibrium. It’s almost a noble goal.

But, for me personally, I want to have ups and downs. I want to have varied answers to “How are you.” Maybe not as varied as Sophie’s, but, you know, not as muted as Nellie’s.

We all fall into patterns — some more flattering than others.

One of my less becoming? I’ve fallen into a habit of dressing Sophie myself.  She’s perfectly capable of choosing her clothes and dressing herself (with the exception of some shoes) and yet yesterday morning I realized that there I was — half-dressed myself, harried and watching the clock, fearful of a late slip — orchestrating her outfit, helping her out of PJs and literally putting her clothes on.

It’s terrible on so many levels. I know it. And doing it yesterday, I had one of those realizations you have — where you see yourself from above and think, “WTF?!”

This morning I managed to scrape together a little extra time, and as I jumped into the shower I announced to Sophie, “Hey! Let’s have a contest! I bet you can’t get dressed before I get done with my shower.”

She did it. That’s how we wound up with competing patterns. Normally I’d micromanage the situation — choose a different shirt (or two appropriate ones for her to choose from) and cajole her into holding her arms up so I could remove the offending one, replacing it with the more aesthetically pleasing option.

But today I didn’t, and it wasn’t even because we were out of time. When we got to the car, instead of lifting her into her car seat (that elusive 40 pounds — and a “grown up” booster seat is still a ways off, even at 6 and a half) I waited while Sophie climbed in herself.

She looked pretty satisfied, as you can see from the photographic evidence.

It was a good morning. Perhaps not coincidentally, Sophie didn’t cry or cling to me when it was time to walk into the school with her class.

I’m not saying things won’t fall apart again tomorrow morning. But I’m going to try hard to make this a new pattern — fashion (and expediency) be damned.

Really, I’ve never been one to pick up a needle — even to sew on a button. I have a dim (in more ways than one) memory of Home Ec in 8th grade.

But I’m really digging this embroidery thing. There is something primal about tucking a stitch onto a line — particularly when that line was created by my kid. (I started with Annabelle; onto Sophie’s artwork next.)

And so — drumroll please — today I offer the front of something I’ve made. (Pardon the poor ironing job; I tried, but haven’t ironed since high school so that’s a little rough, too.) It’s not fancy, the stitches are primitive and uneven, definitely from the “my kid could do that” (and frankly, mine could probably do it better) category. But it’s an original: Annabelle’s drawing of our dear friend Abbie.

The magnificent Abigail Rose, age 14 but wise and kind beyond her years, deserves her own blog post — and I intend to write that soon — but for today I’ll just show you what Annabelle and I made, a late Christmas present for Trish, Abbie’s mom.

I got the idea from Jenny Hart’s latest book — she shows off a self-portrait she made from a drawing done by a young relative. But stitched portraits are all the rage right now, beyond that, even in my own little world. My friend Cindy Dach did an amazing one for a cover story in New Times last year, and if you haven’t seen Angela Ellsworth’s stitched portraits, you must. Breathtaking.

Let’s just say I won’t be quitting my day job to follow in these women’s footsteps. But I’m having fun, which can be a remarkable accomplishment in this world. You know?

I still kinda like the backs, too.

I slid in just before bedtime last night, and Sophie greeted me with her usual exuberence (I wish you could all be greeted by Sophie after a long, hard day) and as usual, I asked how her day was. The response:

“FANTASTIC!”

Nice vocabulary word, and appropriately used, to boot.

Earlier today, Cheri — a wise mom and beautiful blogger — forwarded the link to Lisa Belkin’s post on the New York Times Web site, about the possibility of a cure for Down syndrome.

Whoa.

On a day I ate popcorn at my desk for lunch, I’m way too busy to thoroughly digest that kind of food for thought. But it’s got me thinking, that’s for sure….

Thanks, Cheri. I think.

I’ve come to the conclusion, after this weekend, that it’s as though Sophie’s emotional thermostat is broken. Or at least a bit off. Maybe it’s her social thermostat, rather than emotional. And maybe I shouldn’t say “broken.” I know I shouldn’t say broken. I’m struggling with how to explain it.

Saturday afternoon, I took the girls to a birthday party. It was lovely, very casual, and somewhat unstructured — a park, some hot dogs, a couple of crafts, good weather. The kids dispersed and mainly did their own thing. I tried to hold back from my typical hovering mode, and watched Sophie wander, trying to find her way.

No one else noticed, I’m guessing, but from my perspective it wasn’t good. Sophie was passive — head down, not talking, just sort of aimless and not really connecting with anyone – til finally she latched onto the dad of one of the party guests and had a grand time chatting with him until it was time to leave.

That was not out of the ordinary; I’ve grown accustomed to such birthday party behavior. But what happened next is new, and it’s thrown me for a loop. It’s made me think about the birthday party behavior in a new way.

Later that afternoon, I dropped Sophie at her BFF Sarah’s house for yet another playdate. These playdates have been extraordinarily successful! And I’m cautiously hopefully that they are not just pity parties; I think Sarah enjoys them as well.

But as we pulled away from Sarah’s house, I noticed a pattern has emerged. She doesn’t want the playdate to end. That manifests itself pretty normally — she and Sarah both argue, stall, beg. But once Sophie’s in the car, something happens that I haven’t seen.

She begins to sob. I don’t mean cry or whine or complain. I mean full-on, gut-wrenching My Heart is Broken and I May Never Recover sobbing.

This continues for the short drive home, and for some time after that. The reminder of future playdates helps, but not entirely. I hate seeing her so upset, but at the same time, my heart swells, knowing how much joy those times with Sarah bring to Sophie, particularly when they come with the freedom and novelty of playing at a friend’s house without mom.

It’s as though it’s so awesome, she can’t contain her emotions. She blows a fuse.

I wish we could hit a happy medium, where — like Annabelle  — Sophie hops out of the car at a birthday party, huddles with a group of friends, then leaves the party a little whiny but otherwise no worse for the wear.

That, like so many things, is clearly not to be. Not for now, anyway. And frankly, it leaves me weirded out. The short stature, the hole in the heart, the difficulty with handwriting — okay, I get it, those are results of that 21st chromosome.

But the more ephemeral stuff, like emotional thermostats? Weird. That’s the best way I can put it. Weird.

And there’s no handyman — or even a doctor — to call to fix it.

My dear friend Mrs. M snapped this photo of Sophie last month, and I haven’t been able to stop looking at it — and not just because it’s of my kid.

I tried to describe why, but my words aren’t adequate, so I’ll just leave you with the picture.

Lately, I’ve noticed that I haven’t been writing so much about Sophie and Down syndrome, per se. Maybe it was the distractions of the holiday season, but I think it’s more than that.

Funny, when she was born, the doctors and other experts warned us that as she grew, we’d see her differences more. Instead, more and more (for me at least), Sophie is simply Sophie, rather than Sophie-with-Down-syndrome.

I notice increasingly that I don’t notice it — I don’t compare her (as much, at least!) to kids her own age. She’s emerged as her own little person, good at some things, not as good at others. Sometimes a pain in the butt, but more often a source of indescribable (is that a word?) joy.

I don’t notice people staring in public as much as I used to — though they probably still do. I’m comfortable in my skin, being the parent of a kid with special needs.

At least, I think that til something blindsides me. I didn’t want to write about this, but I’m forcing myself, for honesty’s sake. I owe it to this blog, if nothing else.

Late last night I was rooting around in Sophie’s backpack, and happened upon a somewhat crumpled worksheet. It was a very simple sheet — hopefully you can read the wording on the photo above — asking the student to draw a picture of herself and write a short story about “Me”.

Check Sophie’s out.

OK, I’ll say it: Her finished product is underwhelming.

At first I was angry, thinking, “Wow, didn’t anyone sit down and work with her on that?” — which quickly changed to, “Hey, Amy, what happened to being more concerned that the special ed teacher does too much of Sophie’s work for her?” which then morphed into, “Oh no, what if the special ed teacher was helping her and this is all she came up with?”

In any case, I was bummed. I admit it. After dinner last night, Sophie read me the book in her homework folder, and I was impressed with how well she did with long(ish) sentences, in a sing-songy picture book about a Grizzly bear sitting in a chair, watching circus animals pass by.

But later, after I found that “Me” worksheet, I remembered that at the same point in first grade, Annabelle was easily reading the chapter book “How to Eat Fried Worms” for her nightly homework. (Yeah — I thought it was a little too sophisticated for a 6-year-old, too; Annabelle’s first grade teacher had recently switched from teaching third.)

I know I know I know I know. Sophie is who she is, and she’s a remarkable little girl. I wouldn’t trade her in, that’s for sure. It’s probably good that I dug that wake up call out of her backpack. Time for a conference with the teacher, if nothing else.

Someday I’ll find that happy medium between Just Sophie and Special Needs Sophie. I can see it on the horizon; I just can’t reach it quite yet.