59

Happy Birthday Mom.


It looks a little like a mugshot, but trust me, we were having a blast here, doing one of the things we did best in Paris, which was eat crepes. A lot of crepes. August, 1999.

Wishing you Paris in the fall, Manchego, baguette and Shiraz at 5 o’clock sharp; a stack of new library books, a shopping spree for perennials at Portland Nursery, a weekend trip (bright and early!) to Meier & Frank (even though they’re always having a sale), a matinee on a rainy Saturday, chicken korma at Swagat, or maybe gnocchi at Il Piato, followed by chocolate fondue at Bread & Ink? A strong cup of French Roast at our favorite post shopping haunt, a street full of Sunday morning estate sales, a walk on Mt. Tabor (all the way to the top!)…

And many, many kisses from your grandchildren.

Wish you were here.

What a Difference Five Years Makes

Five years ago this summer, I sat in a hospital bed, longing to hold my hours old baby who had just been shipped off to the NICU with “complications.” The floor had just give out on me with the shocking diagnosis that our first baby, little Leo, had Down syndrome. I was awash with emotions—overwhelming sadness, grief, anger, but mostly shock. How could this have happened?

My sweetly optimistic and always hopeful partner (and Leo’s other mom) arrived at the hospital the morning after his birth armed with a stack of print-outs. She’d stayed up all night researching Down syndrome on the computer and one of the things she found was that every year there is a fundraising walk in Central Park for Down syndrome. We could go! We could bring Leo! She beamed with excitement.

I shrugged. Why would I want to go to that? Why would I want to be around those people?

Oh yes, because we now had a baby with Down syndrome.

We went. I tried (and did not really succeed) to put on a happy face. Leo was about eight weeks old. I remember feeling like I was going to burst into tears the entire time I was there. Every where I looked I seemed to see (what appeared to me to be) low functioning, uncomfortably loud or socially inappropriate people with Down syndrome. Sure there were some babies there, and young people, and they seemed innocuous enough, but I felt completely out of place, like I had no business being there and I had nothing in common with those people. Pictures from that day show me holding a screaming Leo. I look exhausted (yes, sleep-deprived, like any new mother) but also I have the tiny, wrinkled eyes of someone who cries. A lot.

It was true. I had no business being there. I was not ready. But I had plenty in common with those people. I just didn’t know it.

Five years later was this Saturday. Leo is (as we all know by now with the way I carry on here) a buoyant, endlessly energetic, gregarious, friendly (sometimes to a fault-can you be friendly to a fault?) little boy.

There's Leo at the Buddy Walk, going in for his famous dance move, we call "the Donkey Kick." Don't ask.

We’ve gone to other Buddy Walks since that first one, but this year felt just, different. I didn’t feel an ounce of sadness, truly. There was no grief. There was just acceptance (yup, this is our life) and community. It was New York City and complete strangers were smiling at each other and saying hello.

There were people with Down syndrome of all ages and abilities, some were adorable, sporting pigtails and sundresses, others were older, some in wheelchairs, and no, not so easy to look at.

There was cotton candy and snow cones and bad music and parachutes. Tomorrow we can all go back to fighting our small wars, keeping the “R” word out of conversations at the office or in the playgrounds, trying to get Leo to stop throwing his shoes into the back of the minivan or bolting into the street or worrying if he’ll ever be completely included by his typical peers in a general ed classroom. But Saturday at the Buddy Walk, it was just a day to enjoy.

All of this to say, it’s not that I certainly don’t still have my bad days, my sad moments. In many ways, yeah, Down syndrome is a real drag. It will always depress me to know that life will, generally, be harder for Leo than it is for most people, that he and Erin and I will have to fight for things most mothers and children just take for granted. But Down syndrome, while having the possibility of being a real drag, well it isn’t always.

And anyway, Saturday, in Central Park, there was no need for melancholy.

It was just a good day.

More good things:

Leo got his face painted for the first time. This is huge! He's never sat still for something like this. Might that mean a real haircut may be in his future?

My guess is he did it because Little Miss did it first (cause anything she can do he can do better).

Here are Erin and Leo hobknobbing with the glitterati.

That's John C. McGinley from "Scrubs"(for those who don't know he's a big advocate for ending the "R" Word and his son has Down syndrome).

That's Chris Burke from "Life Goes On."

Leo appears pretty unimpressed with both of them.

Well I was impressed, with every darn bit of the day.

A Night Without Leo That Was All About Leo

You know you’re a grown-up when you’re introduced as Mrs. (your last name here) to a principal.

I’m the mom of a kindergartner, a five-year-old, an actual kid, and yet, I still can’t quite wrap my brain around the fact that I’m a grown-up. Someone’s mom.

But enough about me. Last night was Leo’s night to shine, even though he wasn’t even there. It was the open house of his new school. There are five kids in the class (he attends “specials”—music, art, P.E., library) and eats lunch/goes to recess with the general ed kindergarten.

Two other parents came, so not a terrible showing. I always think of my mom during school open houses. A veteran, resigned, sometimes cranky but also deeply committed elementary school teacher, she groused annually about the inevitably horrific attendance at open house night, to say nothing of the parent that once showed up drunk. (True story.)

As far as I could tell there were no drunk parents last night.

For starters, I love Leo’s teacher. What’s not to love about a woman who signs her notes home to the parents “Educationally yours?” She is energetic and enthusiastic and patient and creative and not to get all Disney movie but when she talks about the kids, she seriously gets a twinkle in her eye.

As she spoke about the daily schedule I let my eyes wander around the classroom. It’s cluttered but organized. Kitschy autumn wreaths and scarecrows straight from Michael’s adorned one bulletin board; a table in the corner featured “everything about apples.” They’re doing a unit on apples, so there was apple sauce, dried apple snacks and of course, apples.

And everything in the room is labeled. A woman who enjoys a label maker as much as I do is a woman I can stand behind. We were able to sit at Leo’s little desk and look through his folders and notebooks. The older he gets, the easier it is to comprehend him having a life apart from us (at school for now, in many years, who knows where?). In second grade, Leo will start learning Spanish, as well as begin learning the recorder, in preparation for an instrument of his choice.

Leo is the youngest in the class by far, and being the “new kid” there was plenty of talk about him. He was pronounced “popular” by both the teacher and the aide (what can I say? Music to a parent’s ear) and every teacher/therapist/school official I was introduced to immediately exclaimed “Oh! Your Leo’s mom! (in a good way) when they learned who I was. He does have a certain presence, a way of making himself known by all.

Erin and I surreptitiously skipped out on the PTA meeting that followed the classroom presentations (I haven’t decided if I want to get involved this year but I’ll certainly write the checks for whatever they need).

We used the babysitter as an excuse to extend the evening into cheap, bad Chinese food, eaten under disturbingly bright fluorescent lights. It was the first time Erin and I had eaten a meal out (such as it was), without the kids, in months. We tried our best not to talk about either of the kids too much, but of course, Leo kept coming up. I think we were both on a little high.

Our boy is doing well. He’s happy. He works hard and people like him. Tomorrow that could all change. But last night, over Szechuan tofu and shrimp lo mein, that was all I needed to know.

Oh, Dear

What began as a lovely evening in which I was fed squishy warm pears by Ellie and kissed repeatedly on the mouth (a recent development-she can’t resist it) rapidly deteriorated at bedtime. Actually, it got downright ugly.

If there’s a more appropriate name for a developmental phase than “Terrible Twos” I don’t know of it.

We are in the thick of it. The throes.

Add in the fact that Ellie might possibly be the most stubborn small human being I have EVER MET (and yes I’m screaming) and well, it’s a recipe for…something. (Evidence of stubbornness: After going potty last night Ellie walked around with her little corduroys around her ankles for what must have been a good thirty minutes, ordering to me: “You do it! You do it!” as in, you pull up my pants Mommy! And I’ll admit it. I totally, finally caved. I just. Couldn’t. Take. It. Any. More.).

Like all of Ellie’s phases and developmental milestones, the good old ‘Twos are new to me. Leo didn’t have them. If I had to pick I would say three was the hardest with him (and to be fair, I’ve heard threes aren’t so hot for the 46 chromosome kiddos either). Awesome.

In any event, the peaceful dinner time snuggling and chatting (Me: “I love you Ellie.” Ellie: “You love me? I love you!” were just a lovely way to end a stressful Monday.

And then I had the gall to suggest we all go upstairs for a bath.

Did you know it can take as long as ten minutes to get up twelve stairs if you drag it out long enough? Don’t worry, I never let it get this far.

It was upstairs that Ellie didn’t want to go potty. Then Ellie didn’t want to get off the potty. Ellie didn’t want to get out of the bath. Ellie got out of the bath but didn’t want to be toweled off. Then began the nightly Catch-Ellie-the-slippery-wet toddler-as-she-renders-Leo’s-room-an-obstacle-course. In other words, anything to avoid the dreaded Put On PJs.

In the end, she dissolved onto the rug in Leo’s room, a screaming, weeping, exhausted little ball of fury and bedtime angst.

The whole scene rendered Leo, well, stunned. Ellie was like a little human car crash he couldn’t look away from. He appeared both fascinated and appalled, bust mostly just speechless. And let me be clear: Leo is speech-delayed, but he is anything but speechless. Most nights he has a lot to say about a lot of things. And more and more, Leo and Ellie are talking to each other. Actual conversations.

But not last night.

Finally, when Ellie calmed down, the three of us read two books and I announced it was time for Ellie to go to bed. She didn’t put up much of a fight, which is how I know she’s really tired (like I didn’t know already). I quietly tucked her in, smoothing her Elmo quilt and “laying down” with her (code for me crouching down to her level and rubbing her belly for a minute or two, my arms through the crib slats).

Leo stood uncharacteristically silent in her doorway, the concerned older brother, the unwitting witness of the collision of Terrible and Two.

The Happiest Sick Person I Know

Leo zoomed into the pediatrician’s office going about twenty miles per hour this morning. He headed straight past the “Not So Well” sign (the office has a “well” and a “sick” room, god bless ‘em) and dove headfirst into the pile of books. Yeah, he looked really ill.

All the office ladies greeted him enthusiastically, along with my favorite nurse practitioner. Whenever we go to the pediatrician’s, the whole crew has to check in with Leo. It’s pretty sweet. Leo’s the guy who screams like he’s being tortured whether it’s an ear exam or a flu shot, but he’s also the guy who hugs the bearer of the otoscope or the giver of the shot, the second any “procedure” is over. He can’t help himself.

The school nurse called me yesterday morning as I was headed into work. I saw the number on my caller ID and my heart sank. It’s too soon to be getting sick calls—it’s only week two of school. She explained Leo’s teacher was concerned about the amount of, er, “secretions” coming from his nose. It’s true. Leo’s had a horrific runny nose going on a few weeks now. He’s cheerful in spite of it and seems fine otherwise, so I haven’t wanted to run to the doctor to get prescribed a dreaded antibiotic. I’d hoped this little bug would work itself out but alas, it didn’t seem to be doing that.

I vowed to call Leo’s doctor and made an appointment for the next morning, which was today.

Sure enough, the verdict was bacterial sinus infection. The doctor took his time examining Leo though of course he did not make it easy. His chest was perfectly clear, and the doctor told me that pneumonia can be difficult to diagnose in people with Down syndrome, something about the low tone masking it? He also said it’s important to treat sinus infections quickly so that they don’t spread to the nasal bone. Yikes and also, geesh. But he said Leo was in no danger and we definitely caught it in time. Great, another thing to add to my list of medical paranoia.

The doctor asked me if we’d ever considered an adnoidectomy (Leo does seem to get 2-3 of these sorts of infections every winter and September seems a bit early to be starting). We agreed to keep an eye on things. I’m certainly in no hurry to rush him into surgery, especially since he seems to have finally graduated from his need of the ear tubes (knock on wood).

Feeling a little panicky with all the talk of “infection spreading to the bone,” I chose to fill the prescription this morning and give Leo a dose before I took him to school. Can I just pause to marvel at the wonder of antibiotics? Every time I get sick and am prescribed one (which thankfully isn’t often except for my three-time run at strep throat this spring, yay!) I am amazed at how quickly I start to feel better.

Leo was angel at the pharmacy. I try to support our neighborhood, independent pharmacy whenever I can (you may recall one especially touching time last winter when the pharmacist took pity on me with my two sick, sleeping children in the car and not only came out to my car to take my credit card but also hand delivered the medicine to me while I waited with the kids-yes my heart was warmed and a permanent customer was made).

Today the pharmacist even commented on how good Leo was: “Sometimes when kids come in here they just run all over,” he chuckled.

And that used to be Leo, a lot. Running around, not listening. And it certainly can still be. But today Leo was content to sit in the waiting area with the little muffin I bought him at the coffee shop by the ped’s office. I am noticing so many good things with Leo lately. He is more willing to hold my hand, less prone to bolting. I’m not so hesitant to run simple errands with him the way I used to be. Of course, all of this is also a heck of a lot easier when it’s just the two of us (Ellie was at daycare).

And much to my surprise, he didn’t even freak out when I took him to school. There were no tears and just a brief “collapsing into a limp noodle” incident, which he did every time I took him to school late last year and the year before. He did need a bit of cajoling from one of his classmates. Little Terry came out to the hall to greet Leo, who stood, back against the cold, tiled wall, hands over his eyes (‘cause you know, if he can’t see us we can’t see him). It took Leo less than a minute to go into his classroom where he took off his coat, put his backpack away. I’d visited the class before but that was before Leo was a student there. Before he was, you know, a real, live kindergartner. This is the first time I’ve seen Leo there in action.

When I left him he was sitting at his little desk, perched over his notebook intently and preparing to start a writing assignment. He didn’t even look back at me, didn’t even seem to notice I was leaving.

I know, it's only week two at the new school, but I think he’s really happy where he is. Sinus infection, take that.

Over the Hump?

I hope I’m not speaking to soon or jinxing anything (as a parent, I err on the side of paranoia when it comes to boasting about kid progress). That boasting seems to inevitably be the quickest way to ruin a good thing—I’m the last one to brag when a baby sleeps through the night or a certain little girl makes it through the day in just one pair of Elmo panties--but I’d venture to say that maybe, just maybe, we are over the Misery in the Morning hump.

Slowly but surely, everyone appears to be acclimating to the new routine. Truly, I’m shocked at how quickly it’s happening. As my wise friend Lisa said to me the other day: “It's amazing what we expect these kids to adjust to - I can't handle change…I don't know how I expect my kids to just suck it up!”

Another day of a happy Leo boarding his bus (today, beloved Dog was along for the ride. Let’s hope he comes home but in case he doesn’t I do have a spare and no one will be the wiser). This morning was a little hairy since Ellie was on the potty chair in the living room when the bus pulled up out front. Ellie's been, shall we say, a tad obsessed with the potty lately (I blame the chocolate raisins and fear we've created quite the chocolate raisinaholic).

So there I was, dashing down the steps with Leo, praying that Ellie didn’t toddle out of the house with her pants around her legs. Thank goodness she’s in a listening phase (I know, I know, there I go again with the boasting).

Later, as Ellie and I pulled into the lot at daycare I did hear a brief, heartbreaking little voice say: “I want to go this way! I want to go bye-bye,” (meaning, not to daycare). But the tears never came, and she settled in quickly and quietly to Trader Joe’s Strawberry Yogurt O’s. And then, it happened.

“Bye Mommy.”

Just like the old days, at her old daycare. Ellie would quietly tell me goodbye, before I even told her I was leaving. She knew what was coming.

So I took my cue, and left.

Stating the obvious here, but it’s a lot easier to have a good day when it doesn’t start with leaving your children as hot, crying messes.

Another milestone:

Photographic evidence of the infamous pigtails. I was shocked to find they were still in place when I picked her up last night.

Another milestone:

Leo had his first kindergarten homework assignment last night!

And yet another milestone (can you take it?): When I picked the kids up from daycare yesterday, Ellie and I had a real conversation about her day.

Me: “How was your day Ellie?”
Ellie: “I good.”
Me: “What did you do?”
Ellie: “I play!”

Inevitably when I ask either kid what they played or who they played with or what they did, Ellie says “Leo!” and Leo says “Ellie!”

Last night I joked to Erin we seem to have those weird freaky siblings who won’t play with anyone else…are they going to start their own secret language soon? I kid of course. I’m just so glad they have each other and that they (mostly) seem to make each other so happy.


When Leo’s not trying to put Ellie in a headlock, of course.

Whatever Gets You Through the Day

Breaking news: No tears this morning! From either one!

Friday Leo boarded the bus without struggle and crying (it was the third day of school and the first no-tears morning). I think it helped that he climbed the steps of the bus all by himself, he didn’t feel rushed. Also, I tried something new-Ellie and I walked with Leo, hand-in-hand to meet the bus. They both seemed to love this.

Today we had a repeat of no tears again, though there appeared to be a bit of a struggle to get him into his car seat on the bus (he is slower than molasses and likes to do things independently but I get that the bus can’t wait for him). I’m thinking another contribution to this morning’s success was the fact that Leo was wearing a super hero cape and carrying a magic wand. Hey, whatever gets you through the day.

Ellie was not happy on Friday (plenty of tears) but this morning she didn’t cry AT ALL. I left her sitting at the tiny table, at the daycare eating her pancakes. I’ll admit, she had a look of misery on her face, but did I mention there was no crying? That has to mean something. And also? She let me put her hair in pigtails, so she might have looked miserable, but she looked adorable and miserable. The pigtail thing is BIG, folks. We’ve been talking a lot about barrettes since she’s sprouted these pretty major bangs (more like a Farrah Fawcett flip, really). I let her pick out something to put in her hair this morning and hair bands it was.

OK, lest you think this blog has turned into “How did Leo and Ellie do going to school/daycare this morning?” (cue the snores) let’s move on.

Apropos of nothing, some pictures I've wanted to post but haven't been able to fit in a post. So here goes.

Down on the farm (we took a drive towards Pennsylvania during Labor weekend). Could Leo be any happier? (you have to click to enlarge the photo, really his smile says it all). Also, this cow was so friendly, he was like a dog.
Ellie and the dahlia field (the farm had a u-pick flower section).

The kids got silly on the drive into Manhattan a few weeks ago (the two days spent at my company daycare went well, by the way). But during the the drive in, it was shoes off, splits city.


Ellie pointing out the fountain in front of the building where I work. She's fascinated by anything related to water these days.


Wearing a cape and carrying a magic wand is really nothing unusual for Leo-he loves to dress up (extra points if he makes you laugh in his get-up). Here's Leo waiting to greet a guest at home: (note the tutu-as-collar, Easter hat and maraca in hand).

Lastly, and completely off topic...I'm not crazy about the route I have to walk to get to my office every day, but the best part is unquestionably when I walk through the theater district (it's as close as I get to a Broadway show these days). I love when a new show is opening and they are busily unpacking huge boxes of equipment, lighting and sets for the new production. I can't imagine what a complicated process that must be. And also, Jude Law on Broadway as Hamlet? Hmmm.