Indeed

Favorite recent Q & A with Ellie: (In a conversation with her over the weekend, while trying to prepare for this week's move to the "toddler room" at daycare...)

Me: Ellie, who's your teacher?

Ellie: Leo!

How Do You Hold a Moonbeam in Your Hand?

Jen’s post the other day and of course all the activity surrounding Leo’s possible (and likely) big school change in the fall has had me mulling over some very light topics (insert sarcastic tone here) like inclusion and Kathie Snow's “presumed competence” (the notion that it should be assumed disabled people can do things just like everyone else, until proven otherwise). But the biggest so far, is one that Snow also touches on, which is the idea that our kids are "problems" that need to be fixed.

Leo’s school is Command Central for hand-outs. They must spend a large portion of their budget on photocopying, that’s how much they love to send out information to parents. A lot of it is helpful (news about upcoming conferences or classes), some of it not so much: “try to give your child a fruit or vegetable at each meal, substitute water for juice.” Really? No kidding! Never heard that one! Anyway, one bit on a hand-out sticks in my mind. It was about dealing with “difficult behaviors” specific to Down syndrome. The advice was simple: “Don’t question why your child does something. Your child is not trying to anger you (I would have to put a caveat here that I think Leo is totally smart enough to try anger me but I get what they are saying here). In other words, sometimes, Leo just can’t help it.

He does plenty of things that irk me to no end. And I question (at least quietly, to myself) several times a day why he does things like:
-Takes puzzle pieces from multiple puzzles and stuffs them under the entertainment center.
-Empties out the large (too large, must get rid of some) basket of Little People and disperses them all over living room.
-Tears tabs from “tab” books and breaks pop-up features on pop-up books. (He’s much better about this but he still has a very destructive tendency).
-Compulsively “messes” things up almost as compulsively as I straighten and clean (examples: pushes books off bookshelves, tabletops).
-Insists on shaking out the cup or bowl of whatever he has just finished eating or drinking (he only does this with bowls when he’s eaten fruit so it’s only water that he’s shaking but still…)
-Insists on plopping on his bottom and going Limp Noodle when he doesn't want to do something. Extra points if it's right in front of Ellie's door in the morning when she's still asleep and I'm trying to keep it that way and Leo throws in a nice deep throated "No!" for good measure.

Are you seeing a pattern here? It’s like he was sent from above to cure (or at least curb) my OCD, don’t you think? Totally kidding, and I digress.

One day a while back when I was really losing patience with Leo, a song popped in my head (this is not so unusual, as a lover of Broadway musicals I often have a song running through my head…). The song was “Maria,” from “The Sound of Music:”

She'd outpester any pest

Drive a hornet from its nest

She could throw a whirling dervish out of whirl

She is gentle! She is wild!
 She's a riddle! She's a child!
 She's a headache! She's an angel!
S he's a girl!


How do you solve a problem like Maria?

How do you catch a cloud and pin it down?

How do you find a word that means Maria?

A flibbertijibbet! A will-o'-the wisp! A clown!


Many a thing you know you'd like to tell her

Many a thing she ought to understand

But how do you make her stay

And listen to all you say

How do you keep a wave upon the sand


Oh, how do you solve a problem like Maria?

How do you hold a moonbeam in your hand?

Why does Leo do the things he does? Who knows? And if we squelch all those annoying and "unacceptable" things that Leo does, will we also suck the joie de vivre right out of him, a la the teenage employees with Down syndrome at Amy's Safeway?

And in addition to all the little pain-in-the-ass-but-not-really-consequential things that Leo does I could also ask, why is Leo’s default setting (in other words, his go-to emotion,) happiness? Oh sure he has his not so happy moments (many, many of them, actually) but why does he love to laugh more than anyone I know? Why does he try to hug pretty much everyone he meets or comes into contact with, including the doctor who just gave him a shot? Why, when Ellie hits him, is Leo the one to apologize? (true story, it happened this morning.)

From the moment Leo was born, he was considered a “problem.” There was something wrong with him. That blasted extra chromosome. And so began the journey to fix him.

Terrified of his supposed “compromised immune system” I took the year off work and designed our days and life around the various therapists who visited us at home. We paid out of pocket for the therapies the state didn’t cover and convinced myself that if Leo missed a session or two he would regress and be a doomed vegetable.

I spent a good deal of Leo’s infancy and early toddlerhood obsessed with early intervention. I don’t think I could have done it any other way with Leo, it was just my way of dealing. My focus on therapies and making him “better” masked the grief and occupied my busy mind, the one that was so focused on the sadness that ate away at me. There was much grief for the baby I was supposed to have, so much anger for the “broken” baby that I got instead. I had to channel those feelings into something constructive, to make me feel that I was doing something to make Leo “better.” I do remember reading advice along the lines of “Enjoy your baby,” I think it was in that terrible yet informative Babies With Down Syndrome book that so many of us read in those early days. Wendy says it even better:

“…don't miss it. Don't get so caught up in what your sweet baby is doing or not doing. Don't obsess about this step or the next step or the one after that or what is going to happen twenty years down the line. Because one day you'll look at baby pictures and think about how adorable that baby was and how all you can remember is therapy and you can't even remember what her hair smelled like…”

All of this is to say, Leo might be a challenge, he might make things more complicated, but he is not a problem. He is not someone that needs to be fixed.

I rush to assume Leo won’t be accepted or included or welcomed. To be fair, there is some precedence for this. When I set out to find him a daycare when I returned to work, let’s just say most conversations with prospective schools came to a screeching halt when the words “Down syndrome” were uttered. Whether or not this was legal is a whole other conversation. It’s happening again. We’re looking at other day cares (for financial reasons, otherwise we’re happy where we are) and I panicked that Leo will be accepted, that he’ll fit in and not be too much trouble.

But then things like this happen: I spoke with the kids’ daycare director this morning to let her know that starting this summer Leo would be getting an aid, sent by the district to help, give him a little extra help when he’s at daycare. The conversation went like this:

Me: He plays mostly by himself doesn’t he? I’m hoping this extra person will help integrate him a little draw him out and help him connect with the other kids. And as I’m writing this I’m thinking how in the hell is some stranger/grownup going to make the kids at the daycare want to play with Leo more?

So then the director goes on to tell me that actually Leo is doing very well (she’s seen him more this week since his school is on summer break-he goes back when the extended year program starts up again after July Fourth):

“Leo’s doing great. The other kids actually make an effort to seek him out. They seem to get the language thing [meaning that he might not talk a lot but that he understands everything] and he just loves them, hugging and kissing everyone.”

Oops to the hugging and kissing, but hey, if that’s our biggest problem? I’ll take it. Now if we could just get the rest of the world on board...

Be Careful What You Wish For

The stomachaches continue (for me anyway) on the topic of Leo’s new school. What seemed like a good idea at the time (having him go to the self-contained kindergarten/first/second grade at our local elementary school) has started keeping me awake at night. Is it the right decision? Will it be the right fit for Leo? Will he regress, as his current teacher fears? Will he get lost in the sea of a school that has no fewer than 500 kids and five kindergartens?

Last Friday at Leo’s Pre-K graduation I was an emotional wreck. I used to make fun of parents who cried over the sight of little four-year-old Timmy in his mortar board cap, marching along to “Pomp and Circumstance.” It seemed so absurd. It’s just Pre-K.

I still think the “Pomp and Circumstance” and mortar board wearing is a little silly but otherwise, boy do I Get It. This moving up to kindergarten thing is a big deal. They’re not our babies anymore. And I’m sorry but I think it’s a bigger deal when your kid has Down syndrome, or some kind of "special need." When you watch your little baby struggle to crawl and then sit and then walk and do all the things that the babies of the rest of the world seem to do without a care or a thought? It’s a big thing to see Leo standing there in his little cap, his Polo shirt tucked into his chinos, his little hands at his side as he prepares to lead his school in the “Pledge of Allegiance,” to kick off the graduation ceremony.

The district school placement social worker is holding my hand through this whole process. She listened to me patiently as I sobbed on the phone yesterday morning (Another thing: Can I please get through a conversation about Leo’s educational future without dissolving into a crying mess? Seriously, my eyes have been swollen for days). She assured me the new school is what is best for Leo. It’s the least restrictive environment. It’s what we have always hoped and dreamed for Leo, to be included with his typical peers as much as possible. So why am I suddenly a ridiculous ball of fear and anxiety and trepidation?

I talk big. I talk about the importance of inclusion but the truth is? I am terrified of the thought of losing the security blanket that is Leo’s present school. Without a doubt it is the most restrictive environment. All the kids have Down syndrome. There is no possibility for inclusion. But at the same time,it feels safe and warm and comforting and risk free.

The most I would ask is that Leo remain where he is for one more year, then move him up to the big bad world of a more inclusive environment next fall, when he’s six. But then I think, why wait, just because his mom is a big chicken? Because I know Leo sure isn’t. My only hesitation is that is old school doesn’t think he’s ready. They want him for one more year.

I’m a reporter both by trade and by nature. My instinct when faced with big (and sometimes not so big) decisions is to gather as much information as possible, get all the facts (and the feelings) organized and then see how things look, how they fit together. And so tomorrow I’ll go back to the potential new school to observe, this time without Leo. When I visited last week he came with me, so my time there was limited. In a few more weeks I’ll go to Leo’s old school to see the primary program where he would move to if he stayed there. We still have all summer to decide.

And in the meantime I will do my best to stop bursting into tears.

Wild Kingdom

Feeding time for the world's most patient dog.


By the way, buffalo and dogs live harmoniously together at our house.

Leave Me Alone, Come Back

Like most young siblings, Leo and Ellie seem to have a love-hate relationship. Leo is the classic older brother, extending a helping hand to his younger sister one minute and pushing her down next. Those sweet hugs he likes to give her are usually just sweet…but sometimes they turn headlock and interference is required. Ellie’s no innocent either. Every day she gains confidence. Her latest trick? She’s learned she can positively torture Leo by taking his beloved Dog. Extra points for taking Dog for a spin in the doll stroller. Boy does he hate that.

A few hours together in the house and we all need a break from each other (or at the very least a drive in the car and stop at the Dunkin Donuts drive-thru for iced coffee (mine) and Munchkins (theirs), aka Leo crack. Those blessed few moments where they can’t touch each other because they’re strapped into car seats: Bliss.

But then sometimes I turn around and see this (there was no coercing to get this shot, I swear):

When they’re apart, they ask for each other. One of Ellie’s first sentences ever was “Where’s Leo?” It’s usually the first thing she says when we come downstairs in the morning. On those rare occasions when it’s just Leo and me (doctor’s appointments, usually) and Ellie’s at daycare and Leo’s riding solo in the backseat he can’t stop with the questioning and the demand: “Ellie? Ellie!” I explain to him that Ellie's at her school. We'll see her tonight. "Yea, yea," Leo says, nodding in agreement. A few beats later: "Ellie? Ellie!"

They’ve started conspiring with each other. I’m not sure who discovered that the slight slope in the corner of our bathtub could be used as a slide (I know, who knew?) but it’s become a nightly slide-fest at our house. Just what I want, two small, slippery, naked people cannon balling into six inches of bath water. But apparently they need each other or it’s not as fun. Last night Leo got out of the bath first and Erin was drying him off in the next room. Ellie was trying to slide and calling “Leo? Leo?” Keep in mind that only minutes before, Leo had been swiping Ellie not so gently with a sopping wash cloth. Guess it's just not as fun to slide without an audience.

I just find it funny and sweet. Most of the time they play OK together. We’re working on sharing (it’s a work in progress). I call Ellie “ninny” under my breath several times a day because seriously she cries and whines about everything Leo does to her (even you know, breathing), when it's clearly unwarranted and completely benign. She runs to me to save the day more times in an hour than I can count. Leo is no better. He takes Ellie’s digs (stolen Dogs, misappropriated grapes) very personally. He has a special expression used only when “hurt” by Ellie. It’s a pout that rivals Molly Ringwald’s crossed with the furrowed brow of a cartoon character.

Clearly they aggravate the crap out of each other. But I don't think they would have it any other way.

All. By. Myself.

Notice anything about these pictures?






There are no children in them.

That’s because I went away this weekend. Alone.

That’s right.

All. By. Myself.

I’ve never spent a night away from Ellie. She is nearly two.

I’ve never spent a night away from both kids, ever.

I received an offer I could not refuse (Don Corleone had nothing to do with it, I assure you) and also, it was time.

I left Saturday morning, cruised down the Garden State Parkway and arrived in Cape May, New Jersey around lunchtime. (Sidenote: It felt hard to leave. I kept finding reasons to stall, kept "forgetting" something. It's not that I didn't want to go, I just felt so...strange).

The trip was a stunning blur. From the beginning, when all that had to be done was to throw clothes, a toothbrush and a few books and magazines, to the middle, when the biggest decision to be made was Where to eat dinner? and Should I take the trolley tour of the historical district or the guided tour of the Physick Mansion? To the end, which had me sitting at a bar drinking a beer, eating nachos and wondering just how late I could leave while still avoiding driving in the dark (I’m not a fan).

I spent a good amount of time alone in my twenties. I lived alone for a few years. I spent six weeks touring Europe by myself when I was 25. Since I’ve had kids though, I am very rarely alone. Sure I spend five days a week “kidless” but those days often start before 5 a.m. and begin with the flurry of the morning routine: getting myself and two other people dressed, making breakfasts and lunches, attempting to leave the house in some semblance of order…then I’m commuting, then I’m sitting in an office, then I’m rushing through the streets of Freaking Midtown Manhattan to catch my bus home . Yea, so NOT alone. And what I come home to is two exhausted little people who pack the day’s tumults and frustrations into two and a half frenzied hours. I try to make the best of our time together during the week, but it's not always easy.

This weekend had me thinking about how strange it feels to be alone now, to say nothing of the Responsibilities that have become the blueprint of my life. It is bizarre to wake up when you want to, to have only yourself to get ready. Then there is the luxury of sitting in a restaurant and being able to just eat your meal, with no need for damage control or refereeing or shame about the amount of food matter or cutlery that is plummeting to the floor. There is the wonder of asking the question, What do I want to do today?

I found it remarkably easy to turn off the “Mom” in me this weekend. It is so how I define myself these days, and yet I am so much more than that. The kids have a “hum” to them, they can (obviously) not ever be ignored, even when they are playing (however momentarily) quietly, there is a need for such constant contact that in their presence I find it impossible to Ever. Finish. Anything. A thought. A project. A task. Not complaining, just saying. And also, I know it’s not always going to be this way. Still, it’s beyond refreshing to have the time to finish something, or perhaps more importantly, to do Absolutely Nothing. Which is what I did a lot of this weekend (in addition to taking historical tours, whale watching, light house visiting, window shopping and wine drinking).

I still have interests outside of the kids, yet somehow they seem to swallow up so many of my thoughts, until I am away from them, and it is scary how easily I can forget.

Sunday night I pulled into the driveway and saw Erin standing on the porch, her smiling face waiting for me on the front stoop. And later, after I regaled Erin with tales of surfing dolphins and creepy 111-year-old inns (hint: don’t take a tour of “haunted places” when the hotel you’re staying in looks like something out of The Shining), I checked on each sleeping child. Leo was passed out as he is most nights with his face in a book and snoring loudly, his fleece blanket and Elmo comforter wrapped messily around his body as though he’d had a fight with them. Next door, Ellie sighed quietly in her crib, with Baby jammed between her neck and a chubby pink cheek and Bunny tucked into the crook of her little arm. She stirred a bit as I studied her, so I dashed out of the room, not wanting to take any chances.

Tomorrow it would all start up again. The mad dash, the making of breakfasts and lunches. It was almost as if my time away never happened. But it definitely did.

The weekend was plenty. It felt good to be home.

Costume Boy, Sentence Excitement, Summer TV, Loving (Certain) Mean People and Telling Time

Just another morning at our house.

Leo concots the best outfits. And he is so modest about them. Just this morning he unceremoniously emerged from the basement playroom wearing his jester cap, dragging his dog-on-a-string.

So. Another crazy week and it's ONLY TUESDAY. But it’s all a bit easier to swallow coming on the heels of my glorious weekend. More on that later.

A few notes:

-Ellie continues to speak in sentences more and more. I swear it feels like warp speed. Last week started the demands: “I want to eat that HERE mommy.” “I want to hold that.” “I want Baby (her doll) Mommy.” It is truly stunning. And fun. Her repertoire literally grows daily. And I can’t help but think it is awesome for Leo to be around.

-Both kids were on antibiotics last week (yes we all eventually got strep, the grownups actually caught it twice-yippee!) and both kids have become awesome medicine taking troopers. No need even for the syringe. Ellie drank her dose in the little plastic cup from the Tylenol bottle. How I do not miss the medicine headlock dosing dance. And then it became a competition, who can squeal and cheer the loudest for the other, for successfully taking the medicine! In case it was ever a question, neither kid is a baby anymore.

-"Mad Men" is coming back in August! I haven’t had much time for TV lately but I did start watching “Nurse Jackie,” starring the awesome Edie Falco. She uttered what may be the best line we'll hear on summer TV (I realize that's not saying much). This one’s been highly publicized on the Internet and in mags but it bears repeating as it’s so great:

“I don't like chatty. I don't do chatty. I like quiet. Quiet and mean -- those are my people.”

OK so maybe I’m usually not as mean aloud as I sometimes fantasize, but I admit a love for watching other people be mean. As Dorothy Parker supposedly said, “If you don’t have anything nice to say, come sit next to me.”

-Leo continues to be up most mornings between 5 a.m. and 6 a.m., sometimes a little closer to 4:30 a.m. I believe it is slowly killing both Erin and me. Not that we have a choice. The usual routine is to let him come into our bed to watch 30 minutes of Diego or Mickey Mouse Clubhouse (did I mention he LOVES Mickey Mouse now? We discovered it when we were in Mystic and our hotel had Disney Channel but no Noggin. And by the way, what is up with the theme song to Mickey Mouse Clubhouse? It has to be one of the most infectious and yes, annoying--Meeska Mooska Mickey Mouse? WTH?).

Unfortunately, Leo usually doesn’t want to watch more than about half an hour of TV in the morning (can you believe I’m complaining about my kid NOT wanting to watch TV?). Sorry, but when he’s awake closer to 4:30? I am all Bring On the TV. So I tried something new this morning. I told him we couldn’t go downstairs to play (what he wants to do when he’s finished with TV) until “the big hand on the clock was on the twelve and the little hand was on the six.” And guess what? He totally bought it. He tried to talk me into it being six when it really wasn’t but after a few more explanations and discussion of which hand was what, he left it alone and I got to close my eyes until glorious 6 a.m.
Every little bit counts, I tell you.

Huge, Big, Massive, Scary (and Also Potentially Good) Changes and Did I Mention I'm Not Good With Change?

I've had a post percolating in my head since Monday when I took the tour of Leo's prospective new school for next year.

His class would be a self contained kindergarten with six students, one teacher and three aides. The class joins the typical kindergarteners for gym, music, library and lunch. Depending on the student's strengths in certain subjects (i.e., math, reading) they may also pull students out to join typical peers in these subjects.

I left the visit on a high. It's a precious school nestled on a quiet, tree lined street about two miles from our house. It would be the first "real school" Leo has ever attended. Up to this point he did center-based E.I. at a well, center. His current school is housed in a church.

We passed the cafeteria where I spotted the hair netted lunch ladies when we first walked in and I swear, one whiff and I was in first grade again, wishing my parents would let me have a corn dog.

But I digress.

In addition to the good smelling food, the school has two gyms (one is sparkling brand new), a large library, and a dedicated music room. The bulletin boards were cluttered with fish and stories and busy borders and the halls buzzed (as most schools do) with noise and life and whiggling children.

I went to the school prepared to "write it off," figuring our district just wanted to save money by showing us this program (Leo presently attends school out of district but it's paid for by them, to the tune of about 35K).

Instead, I fell just a little bit in love. It felt right. Leo has the chance to really shine there but he still has the cushion of a place that will give him the extra help he unquestionably needs.

Then I attend the IEP/placement meeting and it all came crashing down.

OK I am being slightly dramatic. Basically his current teacher and principal don't think he's ready to leave. They want him to do one more year with them and then talk about moving into district. I believe they sincerely have his best interests in mind, but did I also mention that they are losing roughly half of their population next year through a combination of graduations and districts insisting on bringing kids back into district? (Note: our district is definitely NOT insisting. They have left the decision completely up to us and would let him remain where he is in a heartbeat so I don't believe there are any ulterior motives there.)

The principal's reaction, seeing my hesitation based on her and the teacher's reaction: "We're just like you. He's your baby but he's also our baby."

A bit of background on Leo's current school: It's a private school paid for by most public school districts (students come from far and wide, some facing one-hour plus bus rides), something like 99 percent of the children have Down syndrome. There are roughly 25 children in the school which is comprised of two preschool classes (ages3-5) and two primary classes (ages 5-approximately nine, though most students leave by about age seven). Leo has been in the preschool class since he was three and the original plan was that he would move to the primary class and spend one more year at that school.

But the evaluators think Leo is ready for kindergarten. His prospective teacher who we met when touring the school thinks he's a perfect fit (by the way this same prospective teacher received rave reviews by an acquaintance who's daughter was in her class). So what's my problem?

I think I'd feel a little less afraid if I knew Leo had the option of going back to his old school if for some reason the new one doesn't work out. But since so many kids are leaving they've had to lay some teachers off and have only one primary class (where Leo would go) and if Leo gives up his spot, that's it.

So I feel like we're out there dangling a little, taking a risk.

Change is scary, but I know, it is sometimes necessary and often good. And it is also a huge part of parenting. Kids move on, kids progress. It's a good thing. I think I just wish his current teacher was a little more excited about this. But I have to wonder how much of it is political and also a bit over-protective. I adore Leo's school but I also get a strong feeling that they are big fans of "Birds of a Feather..." if you know what I mean. And also? They kept saying how "their kids" do better when they spend that extra year there (transitioning between preschool and kindergarten). But who's to say Leo won't be the exception? If we've learned anything since Leo arrived it's that he surprises us almost daily, and does things when he's ready to do them. And my gut says he's ready, even though I am yes, terrified.

Oh and as if all this wasn't enough, we're moving the kids into a new daycare/aftercare. It's significantly less expensive and much closer. Thankfully it's not happening until August because if it were any sooner I think my head just might explode.

Who Are These People?

Sometimes I look at my kids and just think Who Are You? How did you get this little (or in some cases, big) personality?

Case in point: Leo has always had this thing about doing things with his feet. He’s tried to eat (with a fork or spoon) with his feet, placing the utensil between his toes. I know, kind of gross. He tries to pick things up with his feet sometimes. Hmm…maybe I should speak to his OT about it? (Kidding.)

So this is how my two weirdos passed the time on the drive home from Connecticut last weekend.


Leo started it but of course

Little Sister HAD to follow suit.

Shockingly enough, juice boxes don't do all that well between toes.

Neither do dogs.

Really, what else is there to say?

Times Like These

It’s times like these that I have a hard time swallowing my own slogan.

Everything Happens for a Reason? Really? So there’s a reason a woman who is 40 weeks pregnant and chatting about how late babies run in her family, there’s a reason this woman has to find that at 40 weeks, her baby has no heartbeat? And there’s a reason she has to go on to labor and deliver a dead baby, a dead baby who also happens to have Down syndrome? (She knew in advance about the DS.)

I received word of this last night. She is a lovely woman who recently joined the Down syndrome support/playgroup that we’ve attended since Leo was an infant. I last saw her at a play date held by our group. It was a sweltering, unseasonably hot day in April and she sat on a bench at a playground in Brooklyn. She was flushed and glowing and laughed about how she was doing what she did best these days-sitting.

She came with her husband to be with the children. There was no fear in her face as a newborn with Down syndrome, swaddled in a green blanket, was passed around. She seemed to know exactly what she was “in for” and just seemed genuinely ecstatic about the baby she would soon have, a little girl who yes, had Down syndrome.

This, from my friend, who emailed me with the news:

“She and her husband seemed so happy to be having a child, I didn't ever sense a worry about Down syndrome. If ever there was a couple who really wanted this child, it was them. Each of us who knew in advance that our child would have DS was probably very worried about the what-ifs, but [they] seemed so calm.”

I read somewhere that most pregnancies of babies with Down syndrome do not survive-I think even that Down syndrome is a huge factor in miscarriages in general. Cynics might say it is nature’s way…survival of the fittest and all of that.

Whatever. The fact is, it’s a damn miracle that any of us is here at all, no matter how many chromosomes we have. It’s a mystery how any of us survived past the initial meiosis or mitosis or whatever the hell—forgive me, I was not a fabulous biology student. Sometimes I even think it's amazing that any of us made it beyond toddlerhood.

I just, what do you say? I have a card for her and her husband on my desk. I will write something. I know how important these cards are.

I feel teary and distracted. I didn’t know this woman well at all and only had a few conversations with her and they were brief. But her enthusiasm shone through. Of course I am sitting here, my active imagination running on overdrive, cooking up scenarios. They tried for months, years, to get pregnant, they were heart broken when they received the results of the amnio but they soldiered on and came to embrace their unborn baby. They did their research, they met with doctors and educators and most importantly, parents of children with Down syndrome and the children themselves.

I’ve known handful of women who have received diagnosis prenatally and who have come to playgroups hugely pregnant, to survey their futures. I am in awe of them. I can’t imagine what that must be like.

And I am just so sorry for this couple.

I’m going to hold onto my hope and belief that everything happens for a reason, but sometimes, sometimes it’s just damn hard to do it.

The Weekend of Boat Love and Dog Years

This weekend was our annual trip to Mystic, Connecticut. We normally spend the majority of our time at the Aquarium but this year it was all about the boats for a certain young man in our family.

But let’s back up a moment. We couldn’t just leave town Saturday morning as originally planned. Oh no, that would be too easy. First we had to make a pit stop at the pediatrician’s office for Ellie, because I had a sinking suspicion she’d finally caught the strep that we just seem to be passing around the family. Thank goodness for Saturday hours because yup, she has strep. So it was a quick pause at the pharmacy and then we hit the road.

Leo in travel garb.

We made decent time in spite of the late start and arrived in time for lunch at one of our favorite spots.

Leo could not stop talking about the boats. He was basically furious at the young family who parked their boat next to the dock of the restaurant. Leo could not understand why he too couldn't join them when they left.

That's when we decided to skip the Aquarium and opt for the Seaport.

This year’s visit was much different than last year. A certain little girl is now mobile and quite opinionated. She did not understand why she couldn’t walk along the docks (you know, the ones next to Open Water) without a held hand. I’ll just cut to the chase: I’m a Nervous Nelly. I fully admit. I am terrified of kids and water, particularly my kids. There’s Leo, who doesn’t listen and is prone to unpredictable, quick movements, and there is Ellie who is, well, a month from turning two. Enough said.

So since playing by the dock wasn’t scary enough, we went back to the hotel to go swimming in the pool. Seriously, that was fine. Ellie basically squealed with happiness for the first ten minutes in the pool. One glitch: the part where Leo switched gears from jumping into Erin’s arms and managed to make a break for the hot tub, located right next to the pool. Thank goodness for the nice family that was in the hot tub who caught him and kept him from going completely under. Heart attack special, that’s all I can say about that.

The hotel room was trashed within minutes of our arrival. Leo and Ellie are worse than any rock band when it comes to quick destruction. All the telephones were swiftly unplugged, small appliances hidden.

We decided to lay low the rest of the evening.

The kids were tired. We were more tired. There was room service pizza, “Finding Nemo” on cable and finally, bed.

Waiting for dinner to be served.

Make that, attempted bed. Ellie had other plans.

Seriously, Ellie? Refusing to sleep in a big queen bed with Mommy? (Erin and Leo bunked in the other bed, no way we were all going to be in one bed and live to see morning.) Choosing instead to roam around a dark room, chatting to yourself while your moms pleaded with you and your poor, hysterically overtired brother literally cried himself to sleep? That was the night that felt endless, interminable, yes, a night that could be counted in dog years. I’m being a bit dramatic, I know. It only took her about an hour to settle down before she finally just passed out. I knew she would, but there is that irrational fear of What If? What if she never goes to sleep? What if I’m awake all night?

Just remember:
“Going away with kids is not a vacation, it’s a trip.”

On to the evidence:

The captain of our ship at Mystic Seaport.

More boat driving at the Seaport's playground, located right next to the wonderful little Children's Museum. A great find!

A suspicious stowaway

A cranky captain

Lunch at Seaview Snackbar . Yes, heartburn on a tray but TOTALLY worth it.

Lastly, the back view of the t-shirt I stupidly didn't buy. I've been regretting it since we left.

On Check-Ups and Gratitude

I took Leo to the eye doctor yesterday morning for his annual check-up. He had surgery for strabismus last April so this was also the one-year follow-up. The doctor was thrilled with how he’s adjusted to the surgery (apparently either your brain “takes” to the surgery or it doesn’t and there is the chance that his type of procedure may require repeating). But he looks good and doesn’t need to go back for eighteen months so there’s another one to cross off the list. The doctor who did the pre-exam (not our surgeon doctor) seemed to immediately adore Leo. She exclaimed “Oh he’s doing very well, it’s very mild isn’t it? The Down’s?”

I know this was meant as a compliment and that’s fine, it just always shocks me when medical professionals speak this way. “The Down’s”? I mean, who says that?

Also, there’s nothing like sitting in a waiting room to gain a little perspective and gratitude. In my “Why Me” moments of exasperation with some of Leo’s behavior, I need to remember how in the grand scheme, I truly believe Down syndrome is the special needs grand prize lottery. There were some kids in the waiting room who were just…hard. I know if they were my kid I would love them and I’m sure people look at Leo and us sometimes and think “how do they do it?” But Leo is so present. He connects with people and he hugs them (maybe too much but seriously? If that's the worst thing you can say about a person...) and he communicates. Sure he’s stubborn and willful but I’ve also never met anyone who likes to please people more (when he wants to). Not all kids are like this (I know, duh, but still).

I made eye contact with some of the parents of the kids I’m talking about. I smiled at them, they smiled back, some looking exhausted, some looking resigned, some seemed embarrassed. Defeated? I guess I’m projecting. Mostly we all just looked tired, I think.

At one point the dad of one of the kids who I would describe as “challenging” took his daughter to get something to eat, I think I heard him say. She looked to be maybe ten (though it’s hard to say). She spoke in one word statements and repeated a lot of things. She moved very quickly around the room, sat next to people and got inappropriately close a few times (I wasn’t uncomfortable but sensed others were).

When the dad left with the daughter, the mom stayed in the waiting room. I watched as her husband and child left. The door closed, her shoulders went down, the pink covered Blackberry came out. She sighed. In no way am I comparing her situation with mine but I know that feeling. I think all parents do, maybe some more than others. Relief. Peace.

In other appointment related news, Leo was very cooperative, for the most part (I’ll leave out the small struggle with the eye drops which wasn’t as bad as it has been in the past). I can see why his teacher says that Leo “likes to please.” It’s nice to see him relate to other people. I can see him changing, growing up a little, not such a baby—well, not at all a baby, of course. The doctor gave him several different toys to play with, all had buttons and switches. She was watching to see how his eyes focused and moved.

We were a little early to the appointment (the doctor has two offices and we went to one I’d never been to so I left extra time, god bless GPS, have you ever tried to find anything in New Jersey?). Anyway, it was nice because we had about half an hour so I took Leo to the hospital cafeteria where we shared a bagel and juice. Of course he hugged three doctors between the bagel stand and the cash register, but hey. He has a thing for white coated women, I guess. Unless of course they’re trying to administer eye drops.

Score

Is there much in life more satisfying than cleaning up (figuratively speaking) at a garage sale?

I know, I know, how thrilling! Looking at someone else's great deals.

But please, allow me to be a little excited about this:


It's the REAL Little People, People! A bit more info: the bus is wooden and the date on the bottom says 1965. Yes, be still my heart. Now the question is, let the kids play with it (and inevitably break it?) or sell it on eBay and retire with our winnings? Oh I think I've answered my own question.

I can't tell you how many memories I have of that blonde girl with the red body. And the woman in the yellow with the pony tail? Well everyone knew that was mom. And the third one on the left in the green with a pot on his head (for a hat-not sure what that's about). And next to him, isn't that Mr. Hooper, from "Sesame Street?"

When I asked the woman at the sale how much the bus was, she shrugged her shoulders and said "Fifty cents?" almost apologetically. I wasn't sure whether to laugh or cry. And I almost felt guilty letting her selling it to me for that price. But not that guilty.

A few others:

This cradle is so sweet. It's a little hard to see, but can you make out the little design of the elephant on it? I want to say it's maybe from the '50s? It looks a little like a few things my mom showed me from her childhood. The woman who sold it to me (she looked to be in her fifties) insisted on loading it into the back of my car and told me "I just want you to know that my sister, my daughter and I all played with this." Ellie has already put it to good use, tucking in the likes of Elmo, Leo's dog and various other "babies" in the house. I'm trying not to be sexist, encouraging Leo to play with the cradle too but I have to be honest, it seems like he could care less.

Wooden puzzles! Who could forget Muppet Babies (circa early 80s?). Baby Animal's eye is missing here but I know it's somewhere in the playroom.

I had this book as a little girl and LOVED it.

Another cool looking book. Copyright 1948! Putting this one on a high shelf.

I've been wanting to get the kids an easel. This one isn't perfect but for $2 I can't complain. I'm going to have to rig something because it doesn't hold paper so easily, but the chalk board aspect is nice.

And not shown, a doll stroller, pink with strawberries. Finally, the war of the doll strollers (we only had one and it was blue and decidedly Leo's) has ended. Ellie seems to know that since it's pink it must be hers. Scary.