Party Hat

There Will Be Blood (Tests)

posted Tuesday August 17th, 2010

They took Sophie’s blood last Friday. It made quite an impression. After a false start with a less-qualified tech (and some screaming), a very kind woman named Alice coaxed Sophie into the chair and before either of us knew it, had the blood flowing.

That’s a gift. So’s the connection this lady made with my little girl.

Two days later, Sophie had a question from back seat. (She’s full of questions these days: during that particular car ride she also wanted to know “how they make” cars, seat belts, paintbrushes and toothbrushes. And she was not at all satisfied with the answer “In a factory.” I had to promise to look it up on youtube. I love that the “make” lightbulb has clearly gone off over her head, but given my own dim bulb status, it’s going to take some effort to explain such things. Thank goodness for my know-it-all husband.)

“Mommy,” Sophie asked, “What’s the name of the person who took my blood?”

“Alice.”

“No! What’s the name of the person who took my blood?”

“Alice.”

“NO!!!!”

This went on for a few blocks til I finally caught on.

“Um, you mean a phlebotomist?”

“Yes! That’s what I be when I grow up!”

I got a good chuckle out of the misunderstanding, which was good because I wasn’t laughing much over that topic, this past weekend. I’ll spare you the details, but in a nutshell I had a panicked message from the pediatrician’s office Saturday morning, informing me Sophie’s glucose was low and that Sophie must fast and we must report for more tests Monday at 8:30 a.m. The tech (not my beloved Alice) promised to call back with more details. She didn’t.

So by the time I received another message — after the second blood test, informing me that Sophie must seen an endocrinololgist, immediately! — I was completely convinced my kid was diabetic.

Turns out, after several more phone calls (including one in which a pediatrician — not my own — announced cheerfully, “This was sure a comedy of errors!” before bothering to share any news regarding my kid’s health) I learned that Sophie’s thyroid is off, somewhat. She is not diabetic. The thyroid thing is something all parents of kids with DS dread and expect, so while I wasn’t thrilled I was on more stable ground by Monday afternoon, and trust me, that pediatrician will never tell the worried-sick parent of a potentially-sick child that anything is a “comedy of errors” again. 

(The woman actually wept on the phone. And then I had to comfort her. My sister the social worker suggests a different profession for the pediatrician.)

I do feel badly for making someone cry, and worse for worrying myself sick. There’s plenty more to worry about on the horizon, I know that. There will be more blood tests.

For now, Sophie is enthralled, and will submit happily. The other night we played phlebotomist for an hour before I finally had to tell her to stop with the cotton ball and the big rubber band. Some day, she won’t be so thrilled. I hope Alice is around for a long time.


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Party Hat

Stop This Merry Go Round!

posted Tuesday August 17th, 2010

The other night, we hit the mall for Toy Story 3 and some food court action. The movie was great, the food terrible, nothing unexpected. And I wasn’t surprised when Sophie begged to ride the carousel.

Typically, I’m the Carousel Girl — happy to take Sophie on it again and and again while Ray and Annabelle do the roller coasters — but this particular merry go round is too small and too fast, and the last time I rode it I almost lost my food court lunch. Even Ray refused, and I’ve never known him to admit getting sick on a ride.

“I’ll do it!” Annabelle piped up. “I’ll take her!”

I shot her a look of gratitude. And I felt more than a little guilty, watching the girls sit together on the bench (the horses were out of the question for Sophie with no adult there, and anyhow, she’d rather sit), with Annabelle pretending (sort of) to barf over the side as the thing spun.

More and more, these days, Annabelle’s been jumping up to try to make things right. On our recent camping trip, I noticed she chastized her sister a little more than necessary, but also that she tried really hard (as I do) to find creative ways to get her to comply. Annabelle and I fall into a pattern — she’s totally exasperated with Sophie, and I jump in, laughing, with a solution that gets the little one to behave. Or vice versa. Increasingly, it’s vice versa.

I haven’t written much about Sophie and second grade, mostly because I don’t really know yet what to expect. She’s got Annabelle’s teacher, a dear, sweet soul with tons of teaching experience and a heart of gold. I feel comfortable leaving Sophie with her each morning (which is saying A LOT) but I will admit I’m not sure how things will go this year, academically. Actually, that’s not true. I have a strong idea of things will go — I just don’t really want to face that yet.

As usual, Ray pulls me into reality. This morning he took a look at the second grade teacher’s weekly newsletter and announced there was no way Sophie could do the curriculum. I know, I told him. And they know that. But the theory is that Sophie should be with her peers for a lot of reasons, and she’ll be pulled out more and more for special ed. She’ll be okay.

“Poor little girl,” he said, groaning.

Yeah, I replied, but as is usually the case, my thoughts were half with Annabelle as I said it. Her year holds great promise — good friends in her class, a teacher with a solid reputation (and a big pregnant belly; she’ll be on maternity leave, soon, leaving us with the uncertainty of a sub) — and yet, it also holds Sophie.

So far, from what I can tell (and I’ve been putting my reporter skills to the test) no one’s teased Annabelle or held it against her, that she’s got a “different” sister. But it’s coming. I know it is. And I dread it. I know I’m biased, but the last person on earth (aside from Sophie, of course) who deserves any sort of ostracism (is that even a word?) is my dear, sweet Annabelle — the best sister in the world.

Some days I long to push forward. But other days, I wish I could stop time, stay a bit longer in what I’ve come to think of as our family’s Salad Days. Stay at a place where Annabelle’s proud of her sister, where Sophie’s academics haven’t yet faltered beyond repair, where life is good and — for us, anyway — uncomplicated.

A place where Annabelle’s still happy to jump on the merry go round with her sister, even it does make her a little queasy.


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Party Hat

Are You There Margaret? It’s Me, Annabelle

posted Friday August 13th, 2010

I don’t have a lot of romantic notions about camping — except when it comes to Annabelle.

I’d like to think that she’ll look back on our trip last week as part of the Summer She Turned 9 — the summer she danced with her Gaga, performed in a play version of “Diary of A Wimpy Kid” and went to the beach with her cousins for the umpteenth time. The summer she went to Yellowstone.

I imagine her collection of memories: Searching (in vain) out the window of her daddy’s giant truck for grizzly bears, then watching as buffalo practically brushed up against the windows during a late afternoon traffic jam.  The stink and gurgle of those weird “thermal features.” Learning to stoke the campfire and put up the tent. Doubling over in giggles with her mom when her little sister Sophie asked a forest ranger for “extra towels” and pretending to be Olivia the Pig in order to coax that darn Sophie to do everything from get out of the truck to pick up her feet and hike. Freezing in the tent at night, listening to the wind come up and the air come out of her poor dad’s mattress — and to her mom snoring. Looking at the stars, watching movies on the iPhone, making up family versions of the Double Rainbow Song.

And Margaret. I bet she’ll remember Margaret. For all her smarts, up to now Annabelle’s not been a huge reader — not in a can’t-put-that-book-down way. Not until Margaret. I read Judy Blume’s “Are You There God? It’s Me, Margaret” when I was in fourth grade (or maybe third) but it didn’t occur to me that Annabelle was ready for it until a dear friend warned me her own daughter had just finished it and might start chatting with Annabelle about periods and boys.

I packed a copy of the book in Annabelle’s little pink backpack, along with her Nintendo DS and “Spesh” and “Ella,” her security blanket and stuffed elephant. She devoured it. At one point I had to warn her to slow down, that she’d run out of reading material while we were camping (one of my own personal fears). But as it was, her timing was perfect: Annabelle finished Margaret on the last morning we camped — sunk into a folding camp chair, orange Croc-ed ankles crossed daintily, dangling inches from the ground.

(Ah, the drama of the last pages of a good book. My own favorite memory is from fifth or sixth grade, when my pal Glenna Clark played the theme to the movie “Ice Castles” on her family’s piano for extra tear-jerking effect as I read the final paragraphs of Danielle Steele’s “The Promise”.)

Annabelle turned the last page and heaved one of those great big satisfied sighs you sigh when you’ve finished the greatest book you’ve ever read, and I immediately thought about which Judy Blume to give her next: “Otherwise Known as Shelia the Great” is probably too young. I’m not ready myself for “Then Again, Maybe I Won’t.” Perhaps “Deenie”? It’s a delicious debate. But I’m glad I didn’t have any other books with me; it was nice for Annabelle to spend some time reflecting with Margaret.

“Margaret talks to God,” Annabelle told me one morning as we walked the now well-worn path from our campsite to the (thankfully very clean with flush toilets) bathroom. I know, I answered, waiting, worried — this whole god thing is still a sore spot for me, particularly as the Jewish High Holidays approach this year and I have no better answers as to how proceed with a religious education than I did last year. (We’re still attending the Church of Dance….)

“And now,” she continued, “when I’m worried about something, like where I’m going to school next year or stuff going on with friends, I have someone to talk to. I can talk to Margaret.”

Frankly, I can’t think of a better confidant.


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Party Hat

My old friend Tim is popping up everywhere these days. He was the staff photographer at Phoenix New Times when I arrived in 1993 (a position that sadly hasn’t existed in years) and we pal-ed around for a few years, working on stories together and wasting time the way people waste time before they have kids. A long time ago, Tim and his wife Cheri moved to northern California, where he’s got a great mix of commercial, editorial and personal photographic projects going. You can see it at timothyarchibald.com.

I keep up a bit with Tim on Facebook these days; it’s been years since our paths crossed. He’s got two kids of his own now. Yeah, we’re both busy. No more time for making web sites devoted to gummi candy (really! embarrassing!) or driving around south Phoenix, waiting for story ideas to emerge.

Back to the popping up “everywhere” thing. First, Tim popped up last week in a book I’m reading — Bonk by Mary Roach. I highly recommend it and yes, it’s about what you think it’s about: sex. Sex and science. I shouldn’t have been surprised that Roach showed up at an event for a photo book Tim did years ago, about sex machines (literally).

Then, just a day later, Sophie got to a top shelf in her room (I guess she is getting taller) and pulled down a stack of snapshots. “Who’s this?” she asked, holding up a photo of a bald guy in glasses cradling a tiny baby. “That’s my friend Tim holding you,” I told her, remembering (again) that I hadn’t yet posted a piece about Tim’s work, vis a vis the question of whether we should be writing about our kids. So now I will.

Tim does something that’s arguably even more personal and potentially invasive, I suppose, than writing about his kids. He photographs his kids. I’m not surprised, looking back on the days we worked together, that he mines his life, pushes the envelope in this way. I was always impressed by the fact that no matter the assignment, Tim would take extra time with the subject (be it person or object) to make his own work. For him, it was never just about the job, and it was incredibly inspiring to watch.

I feel the same when I look at the work involving his children. You can see it on his web site, and in his latest book, Echolilia — details are on the site about that, too. There’s an image above from the book, and here’s an excerpt from an interview Tim did with a blog called Too Much Chocolate on the topic of what it means to make art about your kids.

Like Trish, Tim has encouraged his kids in their own creative pursuits, particularly Eli, who makes his own images (featured in Echolilia) and actually has his own blog, which I love (but won’t link here because I’m not sure how private Tim keeps it).  This stuff goes beyond writing about your kids, but I think you’ll dig what Tim had to say in the interview with Too Much Chocolate:

If your subject is your kid, access is rarely the problem- everything you need is right in front of you. Being the Dad and then trying to let go of that role and then try to collaborate with my son… oh that is the problem. What will I do to get the photograph? What license will I give him? What line will I cross myself to make the image happen, only to then switch over and be the Dad moments later when the shoot is over?

Here we are re-creating an accident together. Here we are wrapping him in rubber bands….something he did already but this time in just the right light. Is he consenting to this stuff? I showed this work to a friend who responded “ Photographers always claim to be collaborating with their subjects. The truth is we are willing to do anything to get what we want from them. We’ll steal what we can as quickly as we can or pay any price after that if the stealing doesn’t work. You know that is true.” I didn’t disagree.


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Party Hat

Declaration of Indigestion

posted Tuesday August 10th, 2010

Going through Annabelle’s First Day of School papers this evening, suddenly I felt a little nauseous.

There, amidst the cafeteria menu and the spelling list, was a sheet informing me that, according to Arizona law, fourth, fifth and sixth graders in public school will be required as of August 23 to recite a paragraph from the Declaration of Independence every morning.

Funny, before I had kids, I knew all about the laws our legislature was passing. Remember that line from Broadcast News, where Holly Hunter’s character is horrified that some guy she wants to date (or maybe it’s Albert Brooks’ character who wants to date some woman) doesn’t know all the members of the cabinet? That used to be me.

These days, I’m lucky I can name the vice president. I had kids, and brain cells cascaded from every orifice. And really, that’s not funny at all, because now’s the time I should be most aware of what sorts of horrors our incredibly backward state legislators are bestowing upon my kids.

This new law, of course, is far from the worst thing these (and here I’d like to use the term “mouth breathers” but I fear that’s almost as bad as saying “retards” so I’ll just say “elected officials”) elected (not by me!) officials did this year. But consider, in the wake of Arizona’s new but not yet (and maybe not ever to be) fully enacted anti-immigration law, the fact that kids in public school are now required to recite each morning:

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the Pursuit of Happiness. That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed.

Created equal? Endowed with the right to the pursuit of happiness? Um, yeah, not exactly, not for everyone in Arizona, not these days. Not everyone has rights. Not if our legislature and governor can help it.

I thought about refusing to allow Annabelle to participate in the daily droning — er, I mean, reciting — but realized quickly that would just open her to being ostracized, and while I open myself to that all the time, I’m not going to do it to my kid.

This will be like the Pledge was for me when I was in school — she’ll say it quickly each morning, thinking not about the intentions of the Founding Fathers but instead about what might be in her lunch box, or whether there’s going to be a math pop quiz. The whole thing will totally lose meaning for her, and that’s not good, but I suppose it’s not the worst thing that can happen.

The whole thing just creeps me out. And if someone asked me, I’d say let’s have a daily recitation, sure. But let’s make it something different every day. How about a proverb, or a quote, something the class can spend a few minutes chewing on — and the teacher can send a list home every week so the family can continue the discussion. You could even include some wisdom from Arizona politicians, like Barry Goldwater, who once said, “To disagree, one doesn’t have to be disagreeable.” Or a quip from my favorite Mo Udall: “If you can find something everyone agrees on, it’s wrong.”

I’d love to see a group of nine-year-olds hash those over. Let the Arizona Legislature recite the Declaration of Independence if they’re so into the idea. They’re the ones who could use a daily reminder of our supposed rights.


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Party Hat

First Day of School

posted Tuesday August 10th, 2010


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Party Hat

Sophieisms, Part Two

posted Monday August 9th, 2010

“Excuse me, we need more towels, please.” — To the volunteer ranger at the campground we stayed at last week in Yellowstone. Later in the week, she tried to ask for more forks (indeed, we’d run out of plastic forks) but I was onto her and stopped her before she could say anything). The ranger was not particularly amused, by the way, though the rest of us — including Sophie – thought it was hilarious.

“Seat belt, seat belt, na-na-na-na seat belt!” — To anyone who has not immediately put their seat belt on upon entering the car. (This gets a lot of use on a 1000-mile road trip.)

“Mommy, don’t read the newspaper in front of other people. It’s rude, so don’t do it.” (True, but in my defense, I was trying to catch up on the headlines while Sophie brushed her teeth before bed. That seems like a victimless crime.)

Sophieisms, Part One


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Party Hat

Breaking Camp

posted Sunday August 8th, 2010

We are home.

Safe and sound.

No bears — not even a sighting, to the dismay of three members of our little foursome.

And my histrionics? Totally justified, in my sick little mind. In fact, I’m already getting worked up for next year’s camping trip — there is sure to be one next summer, if not before. And I will go, and I’ll try to be happy about it, but the truth is that I am simply not a camper.

Empty spaces make me claustrophobic. Our camp site was perfectly lovely, as such things go, and as far as I was concerned, could have been located in Flagstaff, two hours north of home, rather than two days north (and east). Lots of pine trees. A few squirrels. Noisy generators. And Old Faithful? Um, yawn. Maybe I just didn’t have a great view.

We did have a lot of family togetherness — mostly in a good way, particularly yesterday afternoon in the final hours of the trip, when we were all punchy, making up our own Double Rainbow songs (which is more obvious a sign of our society’s decline, that Double Rainbow video or Annoying Orange?) and suffering Ray’s Czech death metal.

I gathered a few epiphanies and some funny stories I’ll share when I’m done unpacking, but to be honest, none had to do with the purity (or lack thereof) of the camping experience.

Hey, big cities aren’t for everyone, either.


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gulp.

posted Monday August 2nd, 2010

It’s 4:15 AM and I’m writing on my iPhone from the small bathroom of our hotel room here in Jackson Hole-adacent. My family’s snoozing away. I have not had a full night’s sleep since before Annabelle was born and the fact that in the morning we will begin a four night camping trip in Yellowstone is, frankly, not helping. My keyboard is stuck on caps, which is fitting. I am beginning to wish I’D packeD something stronger than Advil PM. I am not a camper, we can just leave it at that, AND YES I SAW THE NEWS REPORTS BEFORE WE LEFT. AND NO, I DON’T ADVISE SITTING UP IN THE MUDDLE (I THINK I’LL LEAVE THAT TYPO AS IS) GOOGLING “SAFETY” AND “YELLOWSTONE”.  ahem. Anyhow, I thought I’d check in with you, dear readers, and ask you to wish us luck, since I don’t believe I will have blogging capabilities in the tent. Ray and the girls are thrilled about this and I know we will be safe and I’m not just saying that in case you are reAding this, Mom. xo AMY


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Party Hat

Robrt Pela is a dear friend and longtime colleague. If you live in metro Phoenix, you might know him as the theater critic for Phoenix New Times and KJZZ, the local NPR affiliate. He writes about other things, too — he’s done a book about John Waters, and New Times stories about every art form you can imagine (and some you can’t). And he writes about his own life.

Robrt’s memoir writing is fan-freaking-tastic, and I am particularly fond of the work he’s done about his family. He doesn’t write about his kids — he doesn’t have any. Lately, he writes about his mother. It’s a particularly bittersweet task, I imagine, because she he has Alzheimer’s.

It’s not the same as writing about your kids, and yet in some important ways, I think, it’s not entirely different, either. Robrt was kind enough to take a break from his almost round-the-clock caregiving role to answer a few questions.

(You can hear his pieces and see a lovely photo of Robrt and his mom on KJZZ’s archives.)

Before this happened with your mom, how did you approach memoir writing?

Much more cautiously. I felt more strongly about protecting people when writing about them as secondary characters in my own story. I worry about that less, now that I’ve written about my mother as a disabled person— something she would not have approved of.

Did you have any rules for what you would/wouldn’t write for the public?

I suppose, unofficially, that I meant not to embarrass people who were close to me. So stories in which others behaved badly were off limits. This is less often true all the time.

How is this different when it comes to your mom, given her situation?

I had to abandon the idea of only writing about things my mother would have approved of, were she still in her right mind, because she was a very private person when it came to anything embarrassing, like an ailment. She wouldn’t have approved any of this, to be honest, and that’s where my personal concerns about exploitation and fairness come in. When we’re writing about someone close to us, we’re writing about ourselves, as well. I was always profoundly moved that my mother’s mother’s lifelong confinement in a mental hospital in the 1920s was such a deep, dark secret. I hated that. By not keeping secrets, I am making up for the ways in which my maternal grandmother (whom I never knew) became a secret. For me, if I’m telling all my stories, without shame, I’m compensating.

You have already put some work out into the world — any regrets once it was there? Lessons learned from it?

I was frankly surprised by the response to the first Mom essay, and I suppose the lesson I learned is that everyone has a mother, and mom storiesnreally resonate with people.

I have no regrets.

Why write memoir?

I like writing what I know, and I suppose I know nothing better than my own story and how I feel about it. Also, writing memoir is a more intimate way of doing what we do all day long: write. It’s like having a discussion with your reader in which you say, “See? We’re different enough that you’re informed or (hopefully) entertained by this story, but we’re also kind of alike; this is your story, too.”

Why write about your mom during this time? Why not just tell happy stories about her?

I find that I can do both, but one has to have reason to write about what a good cook or friendly person one’s mother is or was. The contrast between who she is now and who she was before, in my case, provides a tension and melancholy that I like to bring to my writing.


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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
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