There are “to do” lists strewn around my office, strewn around my life — in the car, the kitchen, the playroom, shoved inside my calendar, tucked into books. Mostly they say things like Call Adam and Buy Black Tights and Write Sue Chenoweth Thank You Note.

It’s the stuff that’s not written down that’s harder — the Big Stuff — like the promise I made to myself literally years ago that I’d get to know a grown up with Down syndrome.

Reading Andrea Fay Friedman’s responses to the “Family Guy” controversy reminded me of it. I can’t really figure out what I think of her responses, and that’s mainly because I’ve never known an adult with Down syndrome. I have trouble grasping where she fits into those comments and (frankly) where her family does.

Admitting that probably makes me a horrible person, or (I hope)  just an ignorant one. One who needs to make some friends.

Not that every adult with Down syndrome will have the same abilities and perspective and sense of humor. I know that. But it’s a point of reference I don’t have.

Next time I make a “to do” list, I’m committing that one to paper.

Several people have pointed out that Andrea Fay Friedman — the actor who did the voiceover for Ellen, a.k.a. “Down syndrome Girl” on that recent Family Guy episode — responded to Palin’s criticism of the show. (Here is a link to the the clips if you didn’t get a chance to see them.)

And if you’re interested and haven’t seen these, here’s a response from Friedman. Here’s another one.

Last night Sophie brought me a book to read before bed — The Giving Tree by Shel Silverstein.

I know it well, although I also knew for sure (despite the fact that we own way too many books I have trouble keeping track of) that I’d never read it to either of my girls.

“The Giving Tree” is one of those children’s books you buy before you have kids. After you have them, you realize that a story like this — about a tree that loves a boy so much she gives him her apples, her branches and finally her trunk — is too impossibly sad. Not something you can easily share with your child.

But Sophie chose it and I read it, and as I read it I thought (in that sick way we can all multitask at this point) about how it seemed more okay to read it to Sophie than to Annabelle — and not just because Annabelle’s got two years on Sophie.

Sophie loved cuddling and listening to a story, and don’t get me wrong, there are plenty of stories she does “get,” but not this one.

Will she ever?

Yes, for sure. Someday, I’m certain, she will, and we’ll read it together and cry. For me to say I’m sure she will someday get it is big. I once wrote that I strongly doubt she’ll ever “get” the book “A Wrinkle in Time.” I was chastized for that, so for now, my jury will at least remain out, if not undecided.

But “The Giving Tree,” yes. Sophie will fully understand loss. Today she doesn’t, which frankly is okay with me. Today is the one-year anniversary of Ray’s mom’s death, and I know I’m corny and always on the lookout for signs, but I did find it interesting that Sophie handed me this sad, sweet book about an apple tree on the eve of this anniversary.

Sophie doesn’t really understand why Ray had an apple tree planted in our front yard a couple months ago. Last week (coincidentally — I’m sure even he didn’t remember — it was the anniversary of the day his mother went into the hospital) he sent me a picture of the first blossom on the tree.

This morning it had several more. We haven’t said anything to the girls (yet, anyway) about the date. Annabelle misses her grandma enough; would this be rubbing it in, to say something?

For months Sophie said, “I miss Grandma” whenever she was tired. It was like a mantra, hard to know if she really knew what she was saying, even, or if it was just one of her conversation starters.

Someday, she will get it, just like she’ll get “The Giving Tree”. And I suspect that will be both a sad day, and a happy one.

As with much in life, I can never decide if “The Giving Tree” really has a happy ending or not.

Back to the whole Family Guy thing. I know I said we should leave Sarah Palin out of it, but of course you know I didn’t really mean it.

I mean, I did want to figure out whether that Down syndrome Girl episode was funny or not, on its face (general consensus from admittedly biased GIAPH readers: not really) but the truth is that this isn’t about a not-very-funny TV show.

It’s about Sarah Palin. As Stacey eloquently put it in the comments on the previous post, the thing that’s so infuriarting is not that the Family Guy folks decided to make fun of someone with Down syndrome — it’s that they did it to get Sarah Palin’s goat. (For the record, I’m also with Kathleen, who points out thank goodness we live in a country where people can make a not so funny TV show about just about anything, if they want.)

I really don’t see why they didn’t just cut to the chase and make fun of Palin herself, since everyone else does.

I will say here that as someone who also writes reminders on her hand — “milk,” “pay Visa bill,” “call dentist” — I don’t find it at all strange that Mrs. Palin writes crib notes to herself when giving a policy speech as part of her would-be presidential candidacy.

Argh! Don’t you see? This woman and I have way too much in common.

Damn you, Sarah Palin. I don’t want to have anything in common with you. And if you emerge from all this as the Poster Mom for Down syndrome, I’ll be really really really pissed. So far it hasn’t happened – for one thing, I don’t get the impression you’re that interested in the subject —  but you know, it still could. When that whole presidency thing tanks, you’re going to be looking for work. The non-profit world just might beckon. Perish the thought. Hopefully the NRA will be hiring.

Of course, it’s not only about Sarah Palin, either.

Palin aside (again), the Family Guy thing struck a nerve because the whole “Is it okay to make fun of people with Down syndrome” thing has bugged me for years. Is anything about Down syndrome funny? Rather, is it okay if anything about Down syndrome is funny?

Here’s an essay I wrote when Sophie was 2. It’s a little raw. (For one thing, I used the word retarded a lot back then.) I’m not sure I would write it exactly this way today, but that’s what happens when you reach into the time machine. (And apologies if some of this material is retread for regular readers. Bits and pieces might be. Also, it’s really long. Sorry.)

I have come to the conclusion that when you have a retarded kid, you can’t make fun of retarded people.  

 The other day, a guy at work showed up in a tee shirt that said, “Homosexuals are so gay.”

 All day, people pointed and laughed.

 I tried it out on Sophie.

“People with Down syndrome are so retarded.”

 Not funny.

Sophie is only two, so I’m leaving the door open to the possibility that at some point, having a retarded kid might be funny. But for now, it’s not. And that really pisses me off, because I’ve always been the kind of person who tries to look on the sick-joke side of life. I like to think I have a good sense of humor, and it’s grounded, like most funny stuff, in the ability to be self-deprecating. For example, I love a good Jewish joke (as long as it has nothing to do with ovens), and as long as I – or another Jew – am telling it. Even at the height of the politically correct thing, you could still snark on yourself, right? And now that we’re past P.C., the world of comedy is pretty much a free-for-all. It’s so post-modern. The other day I heard a joke I thought was really funny:

What t do you call a black guy who flies a plane?

 A pilot, you racist.

 I told that joke so many times and laughed so hard, that finally my husband, who voted for George W. Bush and is not at all P.C., asked, `What kind of a bigot are you?’ That stopped me cold. I thought that was a joke that made fun of bigots – but maybe not.

It’s all gotten so confusing, and no more so than when it comes to Sophie. It’s not funny to make fun of your kid with Down syndrome. I know; I’ve tried. We took the girls to have their pictures taken with Santa (OK, so I’m not a very good Jew) and in the picture, Sophie looks, well, retarded. I pointed that out to a colleague at work, who looked like he wanted to kill himself. Or me.

I’ve thought about it a lot, and I might have figured it out. It’s not funny to make fun of your retarded kid – or, really, any retarded person – because there’s no way that kid or person will ever be in on the joke. By nature of the exact situation you’re making fun of, they can’t make fun, too. Sure, they’ll laugh along, but will they really get it?

So far, Sophie doesn’t. Of course, that could be because she’s 2. I’m planning to hold out hope. I could use a laugh.

Ever since I had my kids, but particularly since Sophie was born, I feel like someone turned off a filter in my head. Lights are too bright, sounds are too loud. I can’t bear to read a story in the paper about an abused kid, but I can’t tear my eyes away, either.

Before Sophie, it was sad when a kid was sick. Now I can’t watch my formerly favorite guilty pleasure television show, E.R., because I recognize the string of medical terms they’re shouting over a patient. I really try not to feel sorry for myself. Yeah, Sophie had open heart surgery when she was 3 months old, but her heart is OK, now. And yeah, last month she was crying bloody tears after eye surgery, but the surgery was minor, and I sat in the waiting room at Phoenix Childrens Hospital during the 15 minute procedure and watched parents carting their children to chemotherapy in little red wagons and wondered how on earth they find the strength to do that?

So you understand that I can use a little levity in my life. And I want you to have some, too, because I don’t want you to feel sorry for me, or for Sophie. I don’t want you to ask how it’s been on Annabelle, her 4-year-old sister, or how this whole thing is affecting my marriage.

Recently, a guy I work with pulled me aside and said, “Look, a lot of times, in staff meetings, people use the word retarded. Want me to ask them to stop?”

“No,” I replied, honestly. “Please don’t say anything. I don’t even notice it.”

And I hadn’t. But from that day on, I’ve noticed every time anyone, anywhere, has used the word retarded. And then I’ve noticed how often, just afterward, they wince.

Do we have to talk about that? Let’s just have a laugh.

I’m trying. I used to read constantly. I still read, but now it’s usually those horrible parenting magazines or Sandra Boynton books. In the middle of the night, when I can’t sleep, I sneak into the bathroom and read the books I want to read — gobbling them like cookies in the near dark. I love David Sedaris and Augusten Burroughs, mostly because nothing’s off limits for those guys. They make fun of themselves, and they make fun of everyone else. But one night, I had to come to terms with the fact that I can’t handle that anymore.

I was reading Burroughs’ latest book, a collection of essays, and I came to one that delved into one of his favorite topics, cruising at bars, and he recounted a tale a friend told him about going out drunk and picking up a guy, waking up the next morning and realizing, to his horror, that his conquest had Down syndrome.

Perched on the toilet (don’t worry, the seat was down. Between two dogs, two cats, two kids and a husband, I don’t have anyplace to sit and read quietly anymore) I thought I was going to vomit. I put the book down and climbed into bed, and lay there and thought, `Well, at least that guy with Down syndrome was high functioning enough to go out to a bar by himself. And to know he was gay. That’s something.’

That’s not enough for a person – me – who two years ago would have howled at the image of Augusten Burroughs’ friend realizing he fucked a retard.

And that’s part of it. Not only is that stuff not funny anymore, but I sicken myself at the thought that it ever was funny to me. What kind of a horrible excuse for a human being am I?

Wait. It gets worse.

When Sophie was about two weeks old, I suddenly remembered “Pink Slip.” “Pink Slip” is an instructional video made in the 70s. Dead serious at the time, but now a joke making the rounds on the Internet. A friend of mine got a copy years ago and we watched it again and again and howled. I’d never known anyone with Down syndrome. (I didn’t even watch that show with Corky in it.)  I’m not even sure I knew that Jill, the main character in the video, had it – just that she was kind of slow. The video portrays Jill’s entire family – in incredible detail, including her father  – teaching Jill about her period. It even includes a scene in which Susie, Jill’s older sister, pulls down her pants to reveal her own thick maxi-pad.

Shit, I thought, staring at my new baby. I’m going to have to get a copy of “Pink Slip” for myself when Sophie hits puberty.

I know I’m supposed to completely change my personality, now that I have a kid with Down syndrome. I’m to take pleasure in life’s simple joys, as revealed to me in Sophie’s beautiful smile. And it is beautiful, and she does bring me a kind of happiness I never knew existed, which is what parents of kids with Down syndrome always tell you. It’s true, I’m not trying to discount it. I’m just trying to figure out how to handle all that joy, and still have a laugh.

Sarah Palin aside, I’m with Whoopi. This is not funny. Neither is this.

Now, if I was a. a regular viewer of Family Guy and/or b. not the parent of a child with Down syndrome, I might find it hilarious. But i doubt it.

Be honest. Have I lost my sense of humor?

I’ll reserve further comment — for now.

True story. Sophie is home sick. It’s just a cold, but on Sophie, a cold is something special. Ever seen a projectile sneezer? I can’t believe what comes out of that teeny tiny nose. I was pondering the fact that it might be time to head to the pediatrician to get an antibiotic (ah, the joy of having a kid with Down syndrome — no one second guesses the antibiotic) when it occurred to me that the Swine Flu Shot Conversation will come up.

None of us in this house has gotten the vaccine. I know, I know, I KNOW. I’m crazy. I need to do it. But flu shots scare me — both for the fear of coming down with it anyway and more so for the terror of the still largely untried. I promise, I’ll make an appointment this afternoon. (I doubt they’ll let Sophie get it when she’s already sick.)

Anyhow. I got out the computer and as I signed on, I thought, I really should blog about this Swine Flu Shot Thing. And then I thought, nah, I’ll just get flack. Why admit it? Why blog at all, this morning? (I, too, have that cold and am feeling pretty foggy.)

I’ll just read some other blogs instead, I figured.

So I turned to a new favorite, a just-begun blog called A Little Bird Told Me. It’s written by Sativa Peterson. I was lucky enough to meet her in Mothers Who Write, and she’s doing some writing for New Times, so I get to see and work with her on a regular basis — and when you read her blog, you’ll see what a joy that is.

Check out her latest post. A funny coincidence, given my own would-be omission — not that my omission is comparable to the one Sativa’s writing about. But still. Interesting how the blogosphere — indeed, the world — can be filled with Too Much Information, yet somehow, not enough.

Sativa puts it much more eloquently.

As we left Starbucks this morning, I heard Annabelle instruct Sophie on how to put her “iced mocha” (a kid-sized chocolate milk with ice) into her cup holder.

It was a rite of passage. As you might know, car seats don’t come equipped with cup holders. At least, ours didn’t when we bought them a million years ago.

Yes, Sophie has graduated to a booster seat. Look how grown up she is, slumped down for a nap on the way home from ballet class (I need to figure out how to deal with that, safety-wise, I realize — it’s off to Target for some options) in her Big Girl Booster Seat! 

Both my girls were the last in their sets to hit the all-important 40 pound mark, the signal that it’s time to ditch the car seat. Sophie’s claimed she’s “fahty pounds” for years now, but it wasn’t til last week, when Ray plopped her on the bathroom scale, that her dream came true.

Unfortunately, the booster comes with the freedom to unbuckle oneself at will — something I discovered the hard way yesterday. We’ve already had a couple of terse discussions on the subject.

And then there’s trying to explain that no, as far as I know, they do not make a Yo Gabba Gabba booster seat. She’ll have to settle for something plain.

But mostly, this has been a happy occasion.

As she climbed into the car all by herself this morning, Sophie announced in a super hero voice, “I booster seat girl!”

It’s slow, but she’s growing up.

A couple weeks ago, I “snuck” some time with Sophie and her classmates. Each of them decorated a heart for Miss Y, and we made a bouquet of Valentine flowers for the teacher.

With the beating public education is taking these days — not to mention the challenges in Miss Y’s particular classroom — there’s no way any of us can adequately show our appreciation. But the kids decorated their hearts with gusto, and were excited to present their little garden. I don’t get to spend as much time in the classroom as I’d like, but even with the brief stints I’ve had this year, I can see the growth in Sophie and her classmates. Miss Y is a wonderful gardener.

She’s also an artist. Her valentine to the kids — heart-shaped “crayons” made from melted broken parts (she’s a friend to the earth, too) were lovely. And the class did an amazing project, “mapping” their own hearts. On Friday — after cupcakes and before they ripped into their valentine bags — the kids put finishing touches on their maps, which included people and things they love. Sophie showed me hers: It included Sophie, me — and, inevitably — Ms. X, her beloved kindergarten teacher.

Miss Y is the latest in a series of gardeners tending to Sophie, all of them — from Miss Janice in pre-school to the second grade teacher I’m currently coveting for next year — an amazing presence in the lives of the kids lucky enough to have them.

Happy Valentine’s Day, Miss Y!

Ever since I started embroidering (or ‘broidering, as Sophie calls it) — and showing off my not-so-handiwork — I’ve heard the same thing.

Don’t worry about the back! It won’t show! Who cares?!

Yeah, the back doesn’t matter, I learned the hard way, til you go to try to frame the piece. Smoosh this stuff down and you’ve got a problem – if you go through embroidery thread like I do.

OK, lesson learned. Figure out how to be neater — or buy thicker fabric. I’m heading to the remnant store asap.

In any case, I’ll take my lumps. It’s still a fun hobby (for a girl who always took pride in not having one) and at least one piece of embroidery from this first round turned out lump-free: our valentine.

Next time, I’ll ‘broider something of Sophie’s. This was a fun joint-effort — as it says on the back of the card, “drawn by annabelle, stitched by amy, valentine’s day, 2010.”

Here’s the one we made for Ray. Annabelle drew him holding “paws” with Jack the puppy. (Note the lumps.)

May you have such happy collaborations with your loved ones, lumps and all!

(And good luck getting that Presidents of the United States song out of your head. I can’t.)

The girls and I were in full valentine production mode last night, when Annabelle raised an eyebrow from across the dining room table and pointed.

“How is anyone going to be able to read those?” she asked, not unkindly.

She was referring to the treat bags Sophie was decorating with foam hearts and Yo Gabba Gabba stickers, as well as her name and each classmate’s name.

I love Valentine’s Day. It’s a nice, soft landing pad after being launched into the real world post-Christmas/Hanukkah. I’ve made myself busy – toasting almonds to mix with cherries and chocolate for the teachers, helping to plan the class parties (such as they are — it’s not like the old days, no homemade treats, and I just had a 15 minute discussion with the Safeway bakery manager about the perils of Red Dye No. 3) and generally geeking out.

But the most important part — the Writing of The Valentines — that, I have to admit, made me a little sad. I only knew which name Sophie was writing because she announced it before attacking each bag with her Sharpie — way easier for her to write with than pencil, ballpoint or crayon — but still resulting in something basically illegible. (Above are two of the better ones. The one on the right is for “Richard.”)

“Oh, I have a system,” I told Annabelle, turning one of the bags over to reveal a number in pencil. Each friend on the list has a different number I assigned as Sophie made each bag; I’ll make tags for the bags later, so that they can be handed out on Friday.

I wasn’t about to deprive Sophie of the ritual of making valentines. As we struggled with each one (she was cheerful throughout, I a little less — though trying hard to mask it) I tried to figure out why it was so much harder this year than last.

Oh yeah. In kindergarten, Sophie’s teacher handed out a list with names in big type; we were instructed to cut each out and have our child glue it to the card. But in first grade, your kid is supposed to be able to write another kid’s name — legibly.

Annabelle was impressed with my number system. It was better, I figured, than making Sophie feel bad about her penmanship. She had a ball — writing with flourishes, taking three lines to make her own five-letter name.

But the number thing didn’t go unnoticed. When she was done with the last one, for her teacher, Sophie held it up to show me she’d written a number on the back. I don’t know quite what to think of that — or, rather, what Sophie was thinking of the whole thing. 

Sometime soon, I’m told, the occupational therapist at school will officially introduce the Electronic Writing Device. Sophie will be able to “write” — to express her thoughts, catch up in school, have a good life.

But little things like valentines — which, to my sentimental (whiny?) way of thinking, are not so little — will always be a struggle.

Science fixed Sophie’s broken heart (hopefully for good, after the second operation) but there will always be little things that tug at the heart strings.

Life’s like that for all of us, in different ways, I know. It’s not just Sophie.

So how much should we dwell on it? Just the other day, my friend Trish and I debated that very subject. I argued that maybe we’re all self-actualizing just a little too much. 

Later, I wondered if the truth is that perhaps all of this embroidery and almond-toasting and valentine-making is just a way of keeping busy to avoid reality.  

Probably. Thank goodness Easter isn’t far off.