Spring is here, and the fig tree in my front yard is covered in fresh green leaves.

Phew.

Not long ago, the yard guy told Ray that the tree won’t last much longer. It’s got some sort of incurable something. We’ve grown accustomed to losing our favorite trees. Fourteen years ago, when we moved into this house, the front yard held both an apple tree and a pear tree. Both died almost immediately. We managed to let the lemon cross with the kumquat, resulting in inedible orange-ish lemons (the fact that I never remember to fertilize may well have something to do with that). And so on.

I am not a gardener.

But the fig tree has held on. It’s gigantic. So is its neighbor, immediately to the west, a big, bushy pine.

To be honest, I hate the pine tree. I’ve long wished it would drop dead. The needles get everywhere — both in the front and back yards, the tree is that big — and the tree sits so close to the house (it predates a remodel by the previous owner) I fear it will take out the dining room in a summer monsoon.

That pine tree is going strong. No one has predicted its demise — except for Ray, who got an estimate on taking the thing out. It wouldn’t be cheap, but cost aside, we both felt a little guilty about it. The tree guy says the tree is strong, shouldn’t come down in a storm or cause any more harm than prickly needles on the patio. Still, he’d be happy to chop it down and grind the stump, for the right price.

As is often the case, my dear friend Trish put words to my uneasy feeling. “You never notice a big tree is there til it’s gone,” she mused the other day over coffee, when I mentioned the pine tree and its possible fate. “They absorb so much noise.”

And, she added, “it just seems like bad karma to chop down a tree just to chop it down.”

OK, I can live with the needles. But I’m not sure I can live without my beloved fig. That fig tree’s held every pinata for every one of the girls’ birthday parties, since long before Sophie could hold a stick.

A couple years ago, Annabelle gave up on the home birthday party. Sophie’s have always been at home. This year she wants to go to Chuck E. Cheese or Pump It Up or the local candy store, but I’m thinking I might try to convince her to have her birthday party at home.

This next week holds a lot of uncertainty — they’ll announce lottery numbers at the arts charter school we’re trying to get Annabelle into. And I’ll attend Sophie’s IEP, where we’ll find out just what kinds of resources the school is willing to offer, in the wake of last week’s terrible meeting.

No matter what happens next week, I know that someday soon, the certainty of the tree we’ve grown in the form of a neighborhood school – including best friends, compassionate teachers and a true sense of community — might get toppled. 

And someday soon, there might not be a fig tree from which to hang a pinata. So I think I’ll sweep up the pine needles, plan a menu and send out the invitations to one more birthday party at home.

Ah, the precarious nature of being 9 and a half.

Or rather, of being the mother of a 9 and a half year old.

Over the weekend, the mother of one of Annabelle’s friends texted me that her daughter needed to speak to mine — and it was important. So we called, got the voicemail. Left a message. They returned ours. We returned theirs. Never connected.

There’s girl drama (when isn’t there?) so I was a little concerned.

Last night when I was tucking Annabelle in, I asked if she and the friend ever did connect.

“Oh yeah,” Annabelle said. “But I’m not supposed to talk about it.”

“Did she get her period?” It just flew out of my mouth before I could stop it. I know it’s early, but it’s not too early; that kind of thing is right around the corner.

“No,” my daughter said in a don’t-be-silly tone. “She thinks she found a sign that a fairy was in her backyard. She wanted to tell me about it, but I’m not supposed to say what it was.”

Or the fairies will go away, right? Well, I’m just glad the Menstruation Fairy hasn’t arrived quite yet. And that I have a kid who still wants to believe in the sparkly variety.

Last night I took the girls to a Bat Mitzvah. Not our typically Friday night activity, but this was no typical kid getting Bat Mitzvahed.

So I rushed home from work and asked Courtney the Wonder Sitter to help me hustle the girls into appropriate clothes and we were all crammed in the bathroom and Sophie was being stubborn.

“Oh, Sophie, please put the dress on,” I begged. “I had a bad day.”

She turned and looked at me.

“Was it because of me?” Sophie asked.

Courtney and I looked at each other. Whoa.

“OF COURSE NOT!” I said, giving her a big hug, and agreed when she wanted to wear a different dress, a velvet sleeveless number with a tutu skirt and a faux leopard fur collar.

Later, after all three of us fidgeted through a long serivce (highlighted by Anna’s incredible performance and Deborah’s touching speech — “You crawled, then you walked, then you wanted to know when you would fly.”) we retired to the synagogue’s rec room for cookies and fruit.

A gaggle of old ladies admired Sophie.

“What is she, 3, 4 years old?” one of them asked.

I smiled. “No, almost 8.”

Inside, I cried. Of course they thought she was 3. Just like the psychologist said. (Typically I blame such comments on Sophie’s size. Not last night.) I cried all day, off and on, mostly in response to the incredible comments you left on my blog and Facebook, dear friends. I sincerely don’t know what I would do with you.

But that’s not the only reason. I’ve lost my footing. Maybe it’s footing I was never supposed to have; maybe it’s footing no one ever should have dared to kick. But I have. And to be clear, it’s not the IQ number. I’ve seen enough of those come and go. It’s the comment about Sophie having the cognitive abilities of a 3 year old. Try hanging with your kid and not thinking about that….All the time.

It doesn’t make me love Sophie any less, but for now, it’s changed the prism through which I view her.

It’s changed my whole world.

On the bright side, we found her glasses.

Not to be melodramatic or anything, but today something happened that completely shook my faith in everything I’ve come to believe about Sophie in the last 7 years, 10 months and two days — something that slammed me hard, right back into that bed in that hospital where she was born. Where the doctor told us he was wrong, that he’d said the baby didn’t have Down syndrome but the test came back and she did and — well, he didn’t say much after that.

The doctor left the room and I opened my mouth and cried like I’ve never cried before. I cried for Ray and Annabelle and for Sophie, I guess, but mostly I cried for me. I mourned the lives we’d thought we’d have — you always hear that from people who have kids with special needs, and it’s true. And I sobbed out of fear, because I had no idea what sort of person this tiny, yellowish, black-haired baby would be.

And then she grew. And so did I. We got Sophie all the therapy, all the “early intervention” we could scrape together. The helmet didn’t fix her flat head but the heart surgery worked (and when it failed, another operation worked, knock wood) and Sophie learned to walk (finally) and use the toilet (eventually) and she went to school.

Something remarkable happened at school. To a person, Sophie’s teachers and therapists all reported that she was remarkably intelligent. At first I thought they were just being nice, but after a while I leaned into it and it felt good to think that my daughter was smart. A new definition of smart, to be sure, but smart. When Sophie left pre-school there was a lot of talk and testing and scores that exceeded all expectations. I’ll admit it, I got cocky.

This isn’t about entrance to the National Honor Society. It’s about entrance to society in general. From what I can tell, only the smartest people with Down syndrome really have a shot at a quality life — at some measure of independence, love, meaningful friendships and work. I needed to believe that Sophie had a shot at that. Wouldn’t any parent?

In kindergarten, Sophie wrote her name at the end of the first week of school. She learned her letters and numbers and she held her own, and when the school said she couldn’t repeat kindergarten because she’d mastered the curriculum, I believed them. Ditto with first grade.

Sophie learned how to read. I couldn’t believe it, but she really and truly could read. Can read. The glowing (new definition of glowing, but still, glowing) reports continued. Second grade is tougher, for sure, but just two weeks ago, I sat with the teacher and the special ed teacher and they pulled out standardized test results and showed me how well Sophie is doing. How remarkably well.

Sure, I said last month, when it was time for Sophie’s three year re-evaluation. Give her all the tests. I knew that Sophie had behavior issues — trouble paying attention, following directions, probably a full-blown case of ADHD — but she’s smart. Give her all the tests, I told the school psychologist, a woman I’d never met.

Today we had a Big Meeting with all of Sophie’s teachers and therapists, the principal, some lawyers, the head of the district’s special ed program and the psychologist. Ultimately, all the data presented will help determine what services Sophie gets, and how her classroom setting will look — since third grade is a Big Step — but for today we were just reviewing the material.

I had a bad feeling. I’d flipped through the super-thick pile of papers I printed from the file the school sent over yesterday, and hadn’t been able to make much sense of it. Funny, I can analyze all kinds of reports and statistics for a newspaper story, but when it comes to my kid, all the numbers just swim across the page, not making sense. I even fumbled with the cassette player I brought to record the meeting, and I’ve been taping meetings for work for years.

So I wasn’t fully prepared for the numbers the psychologist put on the table. The low numbers. Really low numbers. Eye-stingingly low numbers.

Oh geez, ha ha ha, during the testing, Sophie pushed me every step of the way! the psychologist chirped, laughing. Took off her shoes and socks, pretended to pass gas. You name it.

I didn’t smile, even though I try to be friendly in these meetings. (I hate these meetings, even when good things are said.) Sophie’s lawyer (yes, Sophie has her own lawyer) said something about standardized testing not always reflecting true ability.

Next the academic findings were presented — glowing.

As we neared the end of the meeting, I couldn’t help myself. Look, I said, I need to say this for the record, while the tape recorders are still going. I get that as the mother, my opinion is, at best, flawed but compelling. But I have to say it. You all are reporting that Sophie is doing such amazing things. Reading so well, progressing at math. Terrific vocabulary. The only one who doesn’t have good news is the psychologist. And she’s the only one who hasn’t ever worked with Sophie before, who doesn’t know her.

I know her! the psychologist chirped.

Look, I said to the special ed teacher. I know Sophie tests you, but would she take off her shoes and socks with you?

No, the special ed teacher said softly, looking nervous.

I’m just saying that it seems pretty remarkable that Sophie can do all this stuff you say she can do, and her IQ is so low, I concluded.

Remarkable! the head of special ed for the district chirped from the other end of the table.

“I believe Sophie’s IQ really is 58,” the psychologist said, her voice rising — and shaking a little. “Sophie has the cognitive abilities of a three year old.”

And with that, my world crashed at my ankles. The entire world I’ve built, these last 7 years, 10 months and 2 days. A house of cards, full of platitudes and extra-kind words for the stressed out mom of the disabled kid? Maybe. But it was my house of cards. And now those cards were settling on the industrial school carpet under the big conference table.

Numbers, I can deal with. That comment? No way.

Around that table, silence.

Silence from the adaptive PE teacher, who last month caught me outside school and, with tears in her eyes, told me Sophie was the most incredible kid she’d ever seen — told me she was sure she’d one day live all on her own.

Silence from the teacher who, on more than one occasion, has told me that Sophie is utterly amazing — that with the help of computers, she can’t imagine how far the kid will go. And her reading!

Silence from the speech pathologist, who just moments ago had been going on about Sophie’s vocabulary.

And then several people started to talk at once, about how cognitive tests are almost always given by someone unfamiliar with the child, that a trained professional must administer them.

I get that, I said. I get that. And they moved on.

Not me. The meeting finally ended, and we filed out into the parking lot, but for me it wasn’t over. I couldn’t eat dinner, even though I’d skipped lunch. I rushed off to teach my writing class, then stopped at Target and bought — among other things — the purple nightgown Sophie’s been begging for. I made it home just in time to give it to her (Annabelle got the ballet skirt she’s been wanting) and sing both girls to sleep.

I cried all the way home, and this is terrible, but I was wondering how I’d feel when I saw Sophie. Does she have the cognitive abilities of a 3 year old? Really? Has all the rest been total bullshit? Does it matter? She’s still my dear, sweet, stubborn, funny, smart (yes, smart) Sophie. Even if all my expectations for her have been dashed –for now, anyway — by that psychologist.

Who knows. Maybe that woman did me the biggest favor yet, by telling me the truth. One thing’s for sure: I won’t be on solid ground again for a long time, if ever. And maybe that’s not the worst thing.

Another thing’s for sure: Sophie is still my Sophie, still the awesome girl I sent off to school this morning in her ridiculous Minnie Mouse hat from Disneyland because she absolutely insisted, the one who will find her way into my bed later and kick me all night.

Nothing will ever change that.

Remember when you were a kid and you had a friend over and you begged your mom for an overnight? Then more play the next day? And then for the friend to stay for dinner again? For some reason, those memories for me are always accompanied by the memory of being sunburned — probably because so many vacations and weekends were spent in the pool.

It was the best, those endless hours that melted into days and nights, with your BFF by your side. That was Sophie’s spring break last week. Annabelle’s, too — she had plenty of play dates with good friends — but particularly for Sophie, who had her “B,” Sarah.

Last week, Sophie had her very first overnight ever — at Sarah’s house. Two nights later, Sarah spent the night at our house, then stayed through the day, and Ray and I took the girls to dinner while Annabelle spent the night at another friend’s house (like I said, it was that kind of vacation). We went to Joe’s Crab Shack, which grossed me out but the girls and Ray were thrilled — and I got a big margarita. Side by side in their bibs, the girls practically melted into each other, sipping lemonade and picking at their seafood baskets. So happy.

After dinner, the girls begged for another overnight, but Sarah’s mom and I decided we better quit while we were ahead.  I’m sure Sarah and Sophie will hold us to our promise of a sleepover soon.

I can’t wait.

A while back, I was having dinner at a downtown Phoenix restaurant with two of my best girlfriends. Someone who knew someone at the table stopped to say hi.

“Hey, what’s with the book club?” he asked, laughing.

We looked at each other. It took us a minute — he was making fun of the fact that all three of us were wearing glasses.

I rarely think about my glasses. I’ve worn them full time since — geez, I’m not sure how long. A really long time. I am terrified of contacts. Why would you voluntarily stick something in your eye?

And frankly, once you hit a certain age, a pair of glasses can hide a multitude of sins (or, at least, a few wrinkles, at least that’s what I tell myself — and my  mom recently admitted she still wears her glasses even though she doesn’t really need them, for the same reason).

Plus, I love my glasses. Not long ago, I invested in a funky pair by Betsey Johnson, after falling for the ones my friend Laurie was wearing. I love ‘em.

So does Sophie. Sophie has begged for glasses for years, and not long ago it became obvious that she really needs them. Armed with a prescription and a false start at LensCrafters (I don’t recommend taking your special needs kid there) we headed across town to my optometrist.

Sophie chose a pair of wire frames in a blue-purple hue. No Betsey Johnsons for her; Sophie’s are made by (seriously) Barbie. The frames are perfectly nice, very plain.

Here’s where I make my ugly admission: As soon as she put them on, my heart sank.

I often wonder if we are hard-wired to find our own children the most gorgeous, breath-taking creatures on the planet. That’s how I feel about mine — isn’t it how you feel about yours? I could (and do) stare at Annabelle and Sophie for hours, taking in the soft skin, the perfectly shaped calves, the sweet smiles. Marveling that I created such beauty.

Shallow, but true.

So please, universe, don’t stick some crappy, Barbie brand wire-framed glasses on one of those faces. I know you’ll tell me that Sophie looks absolutely adorable in the glasses. But to me, not so much.

Maybe it’s because when I was 4, my mother let me pick out my first pair of glasses and I managed (with the help of a shag haircut that was not my idea) to transform myself into a hideous beast in octagonal green and brown tortoiseshell. (It was a long journey from that stage to the dinner table with bespectacled friends stage.) Maybe it’s because five minutes after Sophie put them on, the glasses were already cockeyed and smudged. Maybe it’s because it’s a pain in the ass to keep glasses on a kid, particularly this kid.

Maybe it’s because when I look at Sophie in those glasses, I see just another kid with Down syndrome rather than my own amazing, unique daughter.

Maybe I’m a terrible, shallow person. But I’m not so terrible that I don’t recognize that my kid can’t see very well. So we got Sophie the glasses, and a special case, and a lot of instructions about how to take care of her new prized possession.

The glasses lasted an entire day and a half before she lost them. So today I’ll call the optometrist and order a new pair. For the next few days, at least, I’ll have my Sophie back.

And some time to adjust my attitude.

Thinking about what I would say in this post, I realized that I write more about the people Sophie bonds with than the ones Annabelle does — maybe because Sophie is so direct in her declarations, maybe because Annabelle doesn’t give her heart quite as easily. But tonight I find myself thinking about Annabelle and Michele.

I wish I could show you a picture of Michele. She’s take-your-breath-away beautiful. I worked with her for 10 years, but I’d still bump into her in the hallway and be stunned all over again by how lovely she is. Inside and out. You’ll have to take my word for it, because Michele doesn’t show her face. Not since she took the job as New Times‘ food critic about five years ago.

Before that she held several other jobs at the paper, including music editor, where she wrote one of my all-time favorite pieces ever, about how Robert Smith from The Cure changed her life.

Two weeks ago tomorrow, Michele gave her two week notice. So tomorrow, her office will be empty.

I will miss Michele for so many reasons, not all having to do with work. She is one of the best listeners I know, and she gives the best gifts. If you think me shallow for the latter, you have never received one of Michele’s incredibly thoughtful presents, always with a card in her beautiful script.

The first gift I remember getting from Michele was a tiny Winnie the Pooh onesie for Annabelle, who was born a few months after Michele arrived at the paper. Over the years, the two didn’t see one another terribly often, but when they did, it became clear that Michele has a Mini Me. Truly, if I hadn’t been in that delivery room myself, I’d say that this was her own kid.

More than once, Annabelle’s startled Michele by showing an interest in (and talent for) something she loves: fashion design, drawing, stickers, handwriting, all things Japanese. The culinary arts. I haven’t played The Cure for her yet, but I should.

Annabelle overheard me on the phone with her a few days ago. “Michele who is leaving?” she asked.

“Michele Laudig.”

Annabelle got a funny look on her face. A little while later, she presented me with the item pictured above: a “plate” of sushi crafted out of felt. “That’s the napkin,” she said, pointing to the white piece of felt next to the green roll. “It’s for Michele.”

The perfect gift.

There’s no way to adequately thank Michele for the countless lunches, the dozens of hand-me-down magazines, the empathy, the hard work, the cheerful knock on my door even when I knew she was grumpy herself. I hope a felt sushi roll from her favorite 9-year-old comes close.

It’s a sign of the times, I suppose, that my mother found a recipe for hamantaschen on a cupcake blog. What’s not cupcake-centric these days, in the world of food?

At least there’s no bacon in these.

The Hamantaschen is not a close relation to the cupcake (though there is a sort of odd recipe for a Hamantaschen-topped cupcake on the same blog). Instead, the Hamantaschen is a cookie/pastry made for the Jewish holiday of Purim.

Purim is a blast. Some call it the Jewish Halloween. I recall it fondly as one of the few times in childhood I truly shined — dressed up as Queen Esther for the Purim carnival parade when I was about 6. As with all Jewish holidays, this one is about suffering — and it’s celebrated with food.

You can read about it here.

Or just make some Hamantaschen. The traditional fillings are prune, apricot and poppy — none of which excited the gaggle of kids (except Annabelle, who requested apricot) I was charged with entertaining one day last week during Spring Break. So I broke out some chocolate peanut butter. Not bad. The New York Times also had a piece last week about non-traditional Hamantaschen fillings.

Marzipan Hamantaschen?! Like I said, I love Purim.

And in the end, the love you take/ Is equal to the love you make. — The Beatles

One morning last week, I woke up before Sophie, who had made her way (as usual) into our bed sometime in the night. Typically, Sophie is a restless sleeper, except for when it’s time to get up. I lounged for a few extra minutes, absent-mindedly running the back of my index finger up and down her cheekbone. I looked at her sweet face and it occurred to me how comfortable I am with this little creature.

And how weird that is.

Not long after Sophie was born — while Ray was busy reading medical textbooks and I was busy trying to think of something else — he said something about our younger daughter that I’ll never forget.

“You know, Sophie really is some sort of miracle,” said the least religious person I know. “She shouldn’t even be alive, not really. Every bit of her is different from every bit of us. She’s this totally unique being.”

Not exactly. Down syndrome, I know today, is one of the most common (if not the most common) genetic defects. Not that I’d ever met anyone with it before Sophie was born, as you know if you’ve read this blog much at all.

Before Sophie was born, and for a good long time after (and sometimes even now, depending on the situation) I was terrified of people with disabilities. When she was born, I didn’t wonder if I’d ever consider her just a member of the family; it didn’t occur to me that I ever would or could.

Stroking her little, other-worldly face the other day, I realized that now I do.

I’ve expressed similar sentiments in the past on GIAPH, but there’s a purpose today. Last week I put up an entirely unremarkable post about something that happened in Brownies, and in return I got the gift of a lifetime, in the form of a comment from Elaine.

Basically (as far as I know) there are two kinds of people who read this blog: People I already  knew before I had Sophie and people who have a specific interest in Down syndrome — maybe they have a kid with DS, that kind of thing.

I treasure both. Truly. I am in awe of the fact that anyone reads any blog any more, let alone mine, and I’ve learned so much from reading the blogs of other parents with kids with DS, something I never thought I’d do.

Elaine doesn’t fall into either category. She found my blog simply because she has a blog about her own daughter, who is named Sophie, and wordpress guided her to mine. Thank you, wordpress. Elaine is so cool! An American Studies professor, a rock climber, an adventurer in ways big and small. I think I can call her a friend. I hope so.

Elaine, to be completely and brutally honest, is my “target audience”  for Girl in a Party Hat, and for everything I wrote about Down syndrome and all that comes with it. That sounds so tacky, but it’s true. I write about Sophie for lots of reasons, but mostly because I hope there’s one person out there who knows nothing about Down syndrome who might stumble on my work and learn something, and not be afraid.

Now, there’s no doubt that Elaine is a far more evolved human being than I am, but still, I think you get the idea. At least, you will when you read the comment she left me last week.

… I have been meaning to write you a note myself. Because I’m 37 (nearly 38) and pregnant, my midwife has been encouraging me to get the non-invasive tests to check if my baby has the likelihood of chromosomal abnormalities. When she first asked if I wanted this, I said, “What would I possibly do with that information?” And then I realized the obvious answer: “I would phone up Amy Silverman and get even more tips than I’ve already gotten from her about how to parent a kid with Down syndrome, and I’d get myself as prepared as I could be for the adventure to come.”

The tests came back negative, so my chances are down to 1 in 11,000 or so. But the nice thing was, it didn’t really matter. Because reading your blog has made me think that parenting a kid with Down syndrome IS an adventure (“the best thing that ever happened to you,” I think your profile used to say), not an easy adventure, but certainly one that I could embark on, knowing already to expect heart problems and social-service-negotiations and IEPs and struggles around friendships and finding fashionable eye-glasses and everything else you write about. It’s an enormous demystification you’re doing for all of us.

What could have been terrifying suspense in all those visits to various doctors’ offices (drawing blood, measuring the fat-folds in the back of the fetus’s neck, drawing more blood later…) became far less terrifying, because your blog has made Down syndrome seem so much less foreign to me.

I know I’m not quite your intended audience, if such a creature even exists. I don’t live in Arizona, don’t have a child with Down syndrome or any reason to care particularly about it — before this pregnancy at what I’m now learning is apparently old age. I just happened on your blog and loved your writing and your attitude.

And it turns out I’ve been learning a whole lot all along, from you, without realizing it.

Thanks.

No, Elaine. Thank you. More than I can say. As my sweet friend Heather put it, that was a wonderful moment.