I have a crush on a fish.

If you know me at all (and I’m sure I’ve mentioned it here once or twice) this might sound strange, because I have had a fish phobia pretty much my entire life. As in I will not eat fish (or anything that comes “from the sea” — and that does include fresh water), I will not touch fish, and I do not like looking at fish. Not when you can tell what it is, anyway.

In almost 46 years, I’ve made so few exceptions I can count them on two hands. I’ll choke down a few bites if you invite me to your house and serve me fish and I really, really like you. I’ll eat shrimp if it’s wrapped in several layers of fresh Vietnamese spring roll. And I’ll stick my toes in the ocean — but just my toes.

Do not expect me to get excited for Shark Week; don’t put a shrimp head in a bowl of soup in front of me; in fact, don’t even leave an old paperback copy of Jaws around. I’ll have to turn it over so I can’t see the cover. Just the thought makes me shudder.

For most of my life, this phobia was fairly easy to indulge. Then I had kids — and pets. Years ago Ray stuck a big tank with about a billion fish (ok, maybe half a dozen) in Annabelle’s room. He cleans and she feeds and I avert my eyes. It works okay. (It’s better than a snake.)

Two Chrismases ago, Santa brought Sophie a fish. I thought this was a big mistake (big surprise) and told Ray so. “What if it dies? What if she kills it? What if she doesn’t care about it?” I asked. “It’s just a fish.”

But Ray knew she’d love it, and she did. He bought a Beta, which meant there would only be one fish in Sophie’s life. I thought it was pretty horrible that our sweet daughter would own a pet with a strong instinct to rip another fish apart in seconds, but I figured the alternative was a whole tank of fish (or a snake) so I kept my mouth shut.

Sophie was thrilled with her new pet, and knew exactly what to name her: “Sophie the Fish.”

I heard that, and an icicle cracked off my frozen heart. Maybe this fish thing wouldn’t be so bad.

And it wasn’t. Ray helped Sophie take care of her fish, and I averted my eyes. After a few months, sometimes I’d sneak a glance at her. And after a year or so, I was actually stooping, once in a while, to examine her. She wasn’t so bad — bulgy eyes, creepy mouth, but her teeny tiny fins were actually sort of cute. She was purple-blue and lived in a tank with a purple castle and plastic purple plants and Sophie the Girl loved to talk to her, to turn her light off and on and to make sure to send her regards via our pet sitter when were out of town.

One day I walked by the tank and didn’t see Sophie the Fish and to my great surprise, I was actually a little upset. Ray assured me he’d been keeping an eye on her and that sometimes she hid at the bottom. I was happy to see her emerge.

Months went by, and Sophie the Fish would come and go and then one day I realized it had been a really, really long time since I’d seen her, so I pressed Ray on it. For a few days he told me he was pretty sure she was hibernating. And finally he admitted she was gone.

“GONE?!” I asked. “You mean she died and you scooped her out and YOU DIDN’T TELL ME? What are we going to tell Sophie?!”

It was a little more complicated, he explained. Sophie the Fish had disappeared.

“I think we better start keeping the cat out of Sophie’s room,” he said.

Oh.

Nothing a trip to PetSmart won’t fix..

Sophie the Fish II is now happy in her new tank, and Sophie the Girl never noticed. Ray felt really guilty not telling her, but I think in this case a little deception is okay. Last week Annabelle confronted me point blank and I admitted to being the Tooth Fairy; that’s enough honesty for me for a while.

Plus, Sophie II looks exactly like Sophie I. I know this for sure because these days, I kind of enjoy sneaking into Sophie the Girl’s room and hanging out around the fish tank. Go figure.

I’m accustomed to correcting grammar and fixing mistakes as I read aloud — Junie B. Jones taught me well — but I admit I stumbled over Chapter 13 in Because of Winn-Dixie, the book Sophie’s been reading for class. I didn’t expect to encounter the word “retarded” in my kid’s school assignment. Why is this word following me around? I thought, exhausted, as I hauled out the laptop and turned it on, ready to email the teacher.

Here’s what I wrote:

Tonight Sophie and I read Chapter 13 together — actually, I began by reading it aloud. I was glad I did because I noticed the word “retarded” is used a couple times. I have real issues with that word, as you might imagine, but as a journalist by training I am also not at all in favor of censorship — particularly of books! (Although to be totally honest, I do ask people to consider not using the word “retarded” when I hear it in public or see it on Facebook — which happens a lot) but i’m curious: How do you and the [fourth grade] team handle it when the word comes up in class, if it does, in the context of discussing the book? I don’t know if Sophie knows the word or if she’d ask about it; probably not. But I’m guessing some kids in 4th grade do.

I hope that question isn’t too much — curious to hear what you think!

And then I held my breath. I didn’t have to wait for long, she wrote back immediately. And I couldn’t have hoped for — or written — such a wonderful response. I only wish this woman had been my fourth grade teacher. (I’m so glad Annabelle had her!) I think this response should be required reading for all of us:

As you know, now that we are entering the realm of big kid books and all of their glory, we will come across a few words that we would never utter and definitely find offensive. There will be many a discussion this year about words that authors feel they need to include, how the characters react, how we feel about them, and how they are treated in our society. Each year we encounter the “r-word” and I am kind of bummed that it is in Winn Dixie right off the bat. Last year we [read] a terrific book called Out of My Mind about a 5th grader with CP who is brilliant, but cannot communicate until she receives a device when she’s about 10. She leaves behind the Special Education classroom and heads off to a traditional 5th grade class. She gives us a personal glimpse of just how painful that word is and the way it makes her feel. We’ll read that one soon, too bad it’s not before Winn Dixie.

I am totally open to your suggestions…but here is how I have traditionally handled it. I talk about how words can change meaning throughout time based on how it’s used. I tell them about my parents’ friend Gay {last name] and my former [co-worker] Linda Gay [last name] and how the word gay has gone from being a word that meant happy and was acceptable in names, literature, and daily use. In more recent years, some people use the word as a derogatory name and to pick on others. Then I talk about the r-word…in the book. I talk about flame retardant pajamas and how retardant means to slow down to give them a round-about definition. Typically I avoid saying that it was a word used to describe people with a cognitive disability. I share that some people, kids and grownups, without seeming to find offense with it, call friends and others the r-word or say they are so r-ted. I talk about how this truly is a hateful word and is just as bad a word as they can imagine and that we need to tell people when we hear them say it that it’s not OK to say. I also tell them that if they hear anyone use it at school, it is a super bad word and they need to tell a teacher. (Side Note: Usually I don’t give a consequence the first time if they were not part of this conversation but use it as an opportunity to have this talk.)

That’s pretty much how I’ve discussed it in the past. Not too much opportunity for them to share because I don’t want them to tell me where they’ve heard it, that’s too sad.

Pretty awesome, huh? And now I’m dying to read the book she mentioned, Out of My Mind.

I just got an email from the new principal at Sophie’s school, entitled “Guess What???”

UGH. I can guess A LOT. Turns out, it wasn’t one of those emails.

Inside it said:

I am in the process of reading all of the…children’s IEP’s and you won’t believe what I discovered! Sophie and I share the same birthday!!!! I can’t wait to tell her! I’m sure we will have a small party, right?

I started to cry. Really. Like, I had to wipe away tears.

He’s reading all the kids’ IEPs AND he’s a guy who “gets” birthdays? It doesn’t get better than that. Totally made my day.

And now I better go — I have a party to plan. Mark your calendars, folks: May 21.

Sophie started a book club — and you’re invited. Just don’t expect much to happen. 

She’s calling it “Sophie’s Book Club,” but I think it should be called “The Best Book Club Ever.”

Last Sunday it was about a hundred and a million degrees out — even too hot to swim — and I was cranky and out of ideas. So when Sophie announced she was starting a book club, I jumped on it. “Want me to go on Facebook and see if anyone wants to join?” I asked.

She was thrilled. (Sophie would very much like to be on Facebook herself, which is not happening. Not now, anyway.) Turns out, everyone wants to join. Sophie made a membership “card,” I ran to the store to make copies, and she kept herself busy for the rest of the afternoon, filling out names.

The club has really taken off. I got an email from the mom of a kid in Sophie’s class, asking if her kid could join. Another mom-friend texted me today to ask if Sophie had chosen a book yet, because she was at the bookstore and ready to buy it if I knew what it was; Sophie had run into this woman at school and assured her the club was meeting this weekend.

That’s news to me.

Here’s the thing: We haven’t really gotten around to choosing a book. Or even discussing if books will actually be read at this club. Apparently Sophie just likes the idea of having a book club.

Can’t say that I blame her. At first I was a little horrified by this thought, and then I realized that Sophie’s simply skipping to the end. Tell the truth: How many book clubs have you been in that actually involved reading and discussing the book? That’s what I thought. I’ve been in several and I never read the book.

(Part of that is my own personal weirdness. Assign me a book, tell me I actually have to read it, and I immediately lose interest. As you might guess, I did not do well in school.)

I don’t know, maybe we’ll try reading books for this club. Or maybe we’ll just get together and have really good snacks and talk about the people who aren’t there. Like I said, The Best Book Club Ever.

(And here I must offer apologies to two of my best friends, Deborah and Laurie, both of whom run reportedly fabulous book clubs.)

Feel free to sign up below. I’ll make some more copies, and Sophie will get to work on your personalized membership card.

I have to admit that I was devastated by Sophie’s comment the other night that she doesn’t want to have kids.

And a tiny bit relieved. But mostly upset. For as long as I can remember, Sophie’s begged for a baby of her own. (I did a piece about it for KJZZ/NPR in 2007.)

We have dozens of baby dolls around the house, everything from the Itty Bitty (or whatever it’s called — the price certainly isn’t) from the American Girl store to several Walgreens specials. Including Bob.

I have dubbed Bob “the scariest doll in the world.” He (or maybe she) is the most basic, old school, crappy baby doll ever — and thus has not held up to the wear and tear of our household. Bob has been stitched back together many times in a series of sewing lessons (mostly that Annabelle has given herself, some from our Super Nanny, Courtney). At one point he/she wore a jaunty fleece shirt and hat Courtney sewed; that’s disappeared. (Why do ALL the dolls in our house end up naked?)

Looking back, a pattern has emerged.

The other day Sophie marched into the bathroom waving Bob, who no longer had a foot.

“What happened?” I asked.

Sophie mimicked yanking the foot off.

“Don’t worry,” I said. “Courtney will be here soon. That can be your project for the day.”

Sophie didn’t seem at all concerned. Two nights later, she let loose with the “kids are too much work” line. It was still bothering me this morning, so a few minutes ago, while Ray was toasting her an English muffin and I was waiting for the caffeine from my first Diet Coke to kick in, I brought it up again.

“Sophie, you really don’t want to have kids?” I asked. (Knowing I should leave this one alone.)

“No.”

“Why?” Ray asked.

“Because they cut your stomach open.”

Ohhhhhhh. I looked at Ray.

“Oh yeah,” he said, looking a tiny big guilty. “I was showing Sophie her birth pictures the other day.”

“HER WHAT?!” I practically spewed soda across the room.

“Don’t worry, you can’t see anything! You’ve seen those pictures!” (I have NOT. I do not want to know anything about that whole C-section scene, let alone see pictures of it, in the case of either of my daughters.)

Okay, well that explains some more.

And for the record, yes, I know all about the challenges of having a child when you have Down syndrome. And I’ve given up (almost) on the idea that Sophie will have babies.

I just wasn’t prepared for the fact that she’s given up.

Sophie: I want to have a house someday.

Annabelle: A house? Do you want to have a husband?

Sophie: Yes.

Annabelle: Do you want to have a husband with Down syndrome?

Sophie: Yes.

Annabelle: Do you want to have babies?

Sophie: No.

Annabelle: No?! Don’t you want to have a little baby of your own?

Sophie: It would be too hard to take care of.

I can’t believe Sophie’s in fourth grade.

Neither could the girl behind the counter at our bagel shop.

“It’s the first day of school,” I told her.

“Cool!” she told Sophie. “What grade are you in?”

“You tell her!” Sophie said. “Fourth,” I said.

“Really?” She peered over the counter to take a closer look.

“Really!” I said cheerfully.

“Really?!?!”

“Yes!”

“Really?!?!?!?!?”

Why would I lie?

This morning Sophie cuddled up against me in bed. Suddenly she pulled her thumb out of her mouth and yanked down the front of her nightgown. “My boobs are growing!” she said.

They aren’t — but they will be soon. Will she still be sucking her thumb then? I wondered as I rolled out of bed. Probably. In so many ways she’s still so young, frozen in time by that third 21st chromosome.

And yet I see the ice melting. Sophie requested gray for her first-day-of-school outfit instead of her usual purple, and a backpack with peace signs instead of a cartoon character. She brushed her own hair, although I had to tie the laces on her new gray sneakers. She insisted on swallowing her thyroid pill with water, just like a big girl, and even agreed to put on her glasses.

“Sophie, you look so professional!” Annabelle said when Sophie barged into her sister’s bedroom for a goodbye hug.

Sophie wilted a little bit when we got to school — yanked off the glasses, refused to take her thumb out of her mouth, even though we’d had a long talk about how fourth graders don’t suck their thumbs at school.

“I’m tired,” she said, leaning on me. I think she was nervous.

For once, I wasn’t. The bell rang and the kids disappeared into the school — Sophie dwarfed not only in size but so many other ways — and yet still, to me, the kid’s larger than life. Fourth grade will be a challenge, for sure. But I’m betting she’ll hold her own. She’s got a homeroom teacher named  Mrs. Wisehart and an aide named Mrs. Wright (great names, huh?) and in a departure from my usual expect-the-worst mantra, I’ve decided to look forward to a good year.

Fingers crossed.

“Hey Mom, why do I have to fold the laundry before I put it away?”

This question came from my beautiful 11-year-old, who stood in her room over a basket of laundry, about to shove a wadded up (but clean!) t-shirt into a giant dresser drawer filled with the same.

I just looked at her, speechless, and suddenly had a horrible thought. “Glass Castle.”

Holy crap. Ray and I are raising our kids like Jeanette Walls’ parents raised her and her siblings. Okay, so I was overreacting a bit. There’s no way we’ll end up in that  whole West Virginia scene (surely you’ve read this book, and if you have you’ll know why I suspect that section of the book is, um, exaggerated) and I doubt we’ll ever be homeless. But yeah, housekeeping is not our forte.

Most of the time I can shove the mounds into piles, spray everything with a little 409 and make myself feel better, but last week things really spiraled out of control. Our cleaning person quit without notice (but with good reason, health-related) and the washer and dryer both gave up at once. Small piles in corners soon became an Everest-sized potential avalanche of dirty clothing from two vacations and when we could no longer see the TV or find a place to stick our feet on the coffee table, it was time to take action.

It was time to clean the house.

“Boy, are you grumpy!” Ray commented last Sunday as he cruised past me in the kitchen, chuckling. “Is it because you are actually having to clean?”

Of course it was. The more I cleaned, the more dirt I found. It wasn’t enough to clean the toilet and the counters, I felt compelled to remove every bottle and jar from every bathroom shelf, clean it (or toss it) then take the glass shelves off and clean those. All of which made a giant mess. The place was a wreck and getting worse every time I turned around, since Sophie’s idea of helping is to remove every item from her dresser and toss it around her room.

I wanted to cry, and not just because I’d lost my weekend. What sorts of heathens are we raising? I muttered to myself as I batted at the bathtub with a Clorox wipe. (What’s the point in doing more than that? Doesn’t soap run all over the shower every time you use it, arguably making it the cleanest spot in the house?)

No one in our house ever makes their bed. I draw the line at leaving dishes and actual food sitting around outside the kitchen; still, it’s not unheard of to find a petrified cup of Carnation Instant Breakfast in the corner of the living room. But everyone’s clean and the house is clean (well, it was when we had a cleaning person, and when she could find open spaces) and really, beyond that, does it matter?

I was beginning to think it did, last Sunday, and then I opened a kitchen drawer to look for a new sponge and found a gift given to me long ago by a good friend, a photographer. It’s a ceramic tile stamped with the words “Art Before Dishes,” and I always meant to hang it above the kitchen sink, but it requires a screwdriver or maybe even an electric drill and I never did get around to it. I’ve kept it for many years.

Back in her room, Annabelle stood watching me, waiting for an answer, the t-shirt dangling from her fingertips. I thought about my own dresser, crammed with wadded up t-shirts and said, “You know what? I don’t know why. Do whatever you like with your laundry.”

So she did — quickly — and then she went back to her art, which at the moment involves a lot of duct tape.  

Art Before Dishes. I think I’ll hang that tile up this weekend, right after I interview a new cleaning person.

Many years ago, my colleague Paul Rubin profiled a local pediatric cardiac surgeon for our paper, Phoenix New Times. The headline was “Prince of Hearts.”

But to me, it’s Paul who’s the prince of hearts. Maybe even the king.

You should read his article about Michael Teodori. It’s a wonderful piece of journalism, well written and the result of months (literally) of reporting. It is not a story, pardon the pun, for the faint of heart. I am, and although it’s been almost a decade since the piece was published, I can still remember standing in the doorway of Paul’s office, wincing as he tried to tell me what it was like to watch the doctor literally hold a baby’s heart in his hand.

“AHHHHHHHHHHHHHHH!” I said, covering my ears and waving my hands to make it stop. I just couldn’t go there. I had a one-year-old and (although I didn’t know it yet) another baby on the way, and I simply couldn’t imagine what it would be like to have a child with a serious medical problem, let alone one requiring open heart surgery.

Less than a year later — days after Sophie was born — I called Paul.

“Hey, you know that heart surgeon you profiled?” I asked. “I need his number.”

Paul didn’t just give me the doctor’s number. He called him personally. He assured me this particular procedure was the simplest these surgeons performed, talked me through the whole thing — several times, although I never did understand just what they did to Sophie’s heart. (Defense mechanism.) Four months later, on the day of the operation, Paul left work to come to the hospital and visit the nurses he’d gotten to know in the pediatric ICU, making sure they’d give Sophie extra-special care. He sat with us in the waiting room, and when Ray and I were able to see Sophie, he stayed behind and waited with my parents. At one point I looked up, and my dad was standing by Sophie’s bed. I was shocked; my father’s not the type to hang out near  medical tubing and bloody incisions. Paul had convinced him to come in and see her.

Nobody convinces my dad to do anything. But nobody had told Paul that.

By the time Sophie needed her second heart operation, at age 4, she and Paul were great friends. Post-surgery, she was understandably cranky, and pushed most visitors away. Not Paul. For months he told the story about how Sophie reached up from her hospital bed, grabbed his finger, and refused to let go.

Lots of people pass the Sophie Test, but few with the flying colors of this guy. When she sees him she goes nuts, and has announced on more than one occasion that she intends to marry him. (Awkward for his current wife.)

Don’t get me wrong. Paul is no saint. In the nearly 20 years we worked together, I wanted him dead on more than one occasion. He can be stubborn, and tact is not always his strong suit. I’ll never forget where I was standing the day he told me a cover story I’d just written was the worst thing he’d ever read in our paper. (An insult I’m still not quite ready to admit as true.)

But I also remember every rare, hard-earned compliment — including last week’s, when he told me how much he likes reading my blog. (It should be noted that when I started this blog, Paul cringed and made faces at the mere idea.) In the last 20 years, the guy has defended me against bullies and bitches; taught me a lot of what I know about journalism; introduced me to trusted sources; and brought me back documents from the courthouse on the hottest summer days. (And if you’ve ever been to Phoenix in July, you know that’s a big deal.)

We joked often that in all our years in the same office, we’d rarely been to lunch together; we were both too busy. But when I needed him, he was there. And he was there for Sophie.

This week, Paul cleared out his office. Even though I’m on the other side of the building, and never could hear his phone conversations or his jazz music, somehow the place feels quieter now. I walked by his mailbox and noticed there’s still a box of Thin Mints in it, a purchase he made from my girls back in January. He doesn’t eat that kind of thing — the biggest treat I’ve seen him allow himself is one Hershey’s kiss from my candy jar, almost every afternoon — but he bought a box of Girl Scout cookies every year when the girls walked around the office with their order forms.

I’d always tell him not to, offering to erase the order after Sophie had sweet talked him — she’d never know the difference. But he’d always insist, saying he wanted to do it for the girls.

He’s that kind of guy.

My friend Cate’s daughter Abby is staring kindergarten this fall, and watching the preparation play out in Facebook posts over the last few weeks brought me back.

Like Sophie, Abby has Down syndrome. Like me, Cate had to fight to get Abby into the school that her older child (who, like Annabelle, does not have Down syndrome) attends.

It wasn’t until Cate and I were corresponding, comparing notes, that I realized how much of that year I’ve conveniently buried. I promised Cate that kindergarten was a wonderful experience for Sophie — and it was. I casually mentioned she might want to have some cocktails on hand throughout the year (for her, not her daughter) but I didn’t mention that it was one of the most nerve-wracking times of my life.

Some of it (a lot of it — after all, i started Girl in a Party Hat to document Sophie’s kindergarten year) I’ve written about. Some of it, not.

Unlike Abby (who lives in another state, which I’m guessing has a lot to do with it), Sophie had no aide. And while I adored (and still adore — she’s one of my closest friends) Sophie’s teacher, she was charged with the instruction of two dozen kids, not just one. I was terrified that Sophie would suck up all of her time. And what about when she wasn’t with the teacher? What about lunch, recess, PE? Early in the year, I learned that during lunch and lunch recess, there was one (really! one!) adult watching the entire kindergarten — just under 100 kids.

It was insane. I sat in an emergency “team” meeting and wrested the principal’s attention away from her Blackberry by announcing I was “looking into” whether this student/teacher ratio was appropriate. And I don’t just mean appropriate for Sophie. I mean any 5 year old.

Turns out there’s absolutely no ratio requirement in Arizona public schools — legal or otherwise — in such situations. Nice, huh? At other schools, the PTA raises money to hire lunchtime aides. When I brought it up to our PTA, I was ignored — instead someone suggested PTA funds be used for Italian lessons, or trips to the zoo.

Anytime I even thought about opening my mouth to ask about any sort of extra help for Sophie, I was told quite firmly, “If you want Sophie to be at this school, she’s going to have to act like the rest of the kids.”

And so I took matters into my own hands. Every single day of kindergarten (literally I think there was one day we went without — someone had a bad cold), a “volunteer” showed up at Sophie’s classroom. Two young women, students at nearby Arizona State University, worked in shifts, kindly offered their services — fixing snacks, handing out glue and scissors, grading papers — all while keeping an eye on Sophie.

These girls hung around during lunch and lunch recess. They went to PE and music class. And then, at the end of the day, one of them took Sophie home from school.

They were our babysitters. Yep, I sent Sophie to kindergarten with a babysitter. It wasn’t cheap, and I worried the entire year that someone would rat me out and the principal would call me in. Looking back, I can’t imagine she didn’t know. Clearly we had a “don’t ask, don’t tell” policy — and unlike in the military, in this case it worked.

It was a terrific year. The girls were hands-off; I’m not sure their charge ever realized they were there just for her. In any case, Sophie flourished. She wrote her name by the end of the first week of kindergarten, despite the occupational therapist who insisted she never would. She was invited to birthday parties and learned to read. She met the little girl who’s still, almost five years later, her best friend in the world.

That kindergarten classroom was the right place for Sophie. Could she have done it without Emily and Jeanine? Maybe. But I couldn’t have. (And still can’t — but today I have Sophie’s lawyer to thank for finally convincing the school to give Sophie the extra support she needs to stay safe.)

Funny, I’d forgotten all about the babysitters/aides/spies til Cate asked me how things worked for Sophie in kindergarten. I’m glad she reminded me.

And I’m glad I dug up a picture. Sophie grows so slowly, sometimes I feel like she hasn’t grown at all. But look how tiny she is in this picture! Could you drop this kid off in a kindergarten class all by herself? I didn’t think so.