Never Alone

Lately Harry has really been getting into his toys. As in, he has to get inside his toy box.
Look how pleased he is with himself.

The thing about coming from a big family (to me, only child until I was eleven, four kids is A LOT), is that you are rarely, if ever alone.

Yup, just like I was saying. Can't get a moment of peace around here.

But that's also part of the fun.

You With the Stars in Your Eyes

Leo, presenting his latest version of the solar system. I feel like he's made a lot of progress since his last version.

Leo continues to be fascinated with all things space. If you ask him about space? Make sure you have some time. Because he will talk. A lot. He knows that Jupiter has a big red spot on it. He loves to talk about saturn's rings (made from ice! And rock!). And he feels very bad for Pluto, who, as everyone knows, was demoted.

You may recall this interest began in the spring, when his class began studying the solar system. We're doing what we can to encourage Leo. Superheros are fine and good but space exploration in eight year olds is something I can really support.

Erin bought him a special "space" issue of National Geographic, which he absolutely devoured. He'd been asking for "space dvds." We found some on YouTube (who can forget "Interplanet Janet?") but a little more research on Amazon presented us with this jewel. Ellie positively groans when Leo asks to watch it but I think she secretly enjoys it.

Back in July, Grandma and Grandpa bought Leo these for his birthday (they hang from the ceiling).

I'm just impressed all those planets (except for Earth, which unceremoniously came crashing down on Leo's bedroom floor sometime in August) are still intact. Speaking of home decor, while searching for an image of the ceiling planets, I came across this, which would be abso-stinking-adorable in Leo's room:

I curse you, overpriced Land of Nod bedding, for all the the fantasies (and at $229 for a full-size quilt, I do mean fantasies) you plant in the heads of well-intentioned parents everywhere!

31 for 21: Here's the Thing

Warning: It's not all about Down syndrome around here. In fact, it's hardly about Down syndrome at all. (If anyone had told me, eight years ago, that I would someday write that as a caption for a photograph of two of my four children (Wait, WHAT?) I would not have ever believed them). This just goes to show you: You truly never know what will happen in your life.

I know you are all waiting in rapt suspense to see whether or not I will participate in  this year's "31 for 21" (blogging every day for the month of October in honor Down syndrome Awareness).

I'm torn. Part of me likes it as an exercise in writing (and sticking to something for an entire month is kind of fun). Selfishly, it's nice for me to have one good chunk of writing to look back on, since I don't post here nearly as much as I like to. But then there is the little matter of what to write? I know everyone says "you don't have to write about Down syndrome" but I do feel added pressure to somehow tie in the old extra chromosome, at least in some posts. I've written so much about Down syndrome that there is some level of performance anxiety involved now. Mostly, I don't want to repeat myself and bore you all to tears (any more than I already do-ha!).

And here's a funny thing: I started this blog in 2008 when my oldest son Leo was four, thinking I'd write mostly about Down syndrome, and that's indeed mostly what I wrote about. I started it as a way to process this Big Thing that had happened in my life and also with the hope that I would find a larger Down syndrome community beyond the one I'd found locally (which was fine, wonderful even, but for some things, more is more). I found that wonderful community, in spades.

I feel like I have beaten the Down syndrome horse. I wrote about our struggles with Leo's sleep and his behavior, about the hand wringing surrounding his school placement, about his eyes and ears and his adenoids and his teeth. I wrote about the grief surrounding his diagnosis and the eventual acceptance.

And then Leo graduated from preschool. Then kindergarten. Suddenly the language delayed little boy would Not Stop Talking.

And then his baby sister grew into a little girl.

And then two more little people came along, and then we were six. Then twin babies became toddlers. Life got even busier and more ridiculous (mostly in a good way).

And Leo still (obviously) has Down syndrome, but I think with every year that goes by, the Down syndrome has receded into something that just is. It's no longer at the forefront. All the questions are gradually being answered. Will he walk and talk? Of course.  Will he read and write? Oh yes. Will he stop running off in public places? Yes, thank goodness. Will his speech improve? Gradually, yes. Of course, knock on wood, we've been very fortunate have none of the major health problems that can be associated with Down syndrome. We've had the privilege of relative normalcy. At least, it's what's normal for us.

All of this to say, I think that mundane, not all Down syndrome, all the time can also be a contribution in this whole "31 for 21." Because to this day I remember the feeling of waking up in the mornings that followed Leo's birth, rolling over and looking at the light coming through the window of our little garden apartment in Park Slope Brooklyn, thinking: "My baby has Down syndrome. My baby has Down syndrome. And that's all I will ever think about again."

Because of course that's the farthest thing from the truth.

But in the early days, when Down syndrome loomed as The Worst Thing That Ever Happened To Me? I would have given anything to stumble onto a blog that talked about "American Horror Story" (I've decided I'm absolutely too scared to watch season two), the best Thai food in Portland, Oregon, the paper dolls I scored on eBay and Oh My Goodness You Won't Believe The Cute Thing The Babies Did Today. And did I mention my oldest son has Down syndrome? And that it's honestly (most days) no big deal?


If that's the kind of blog you're looking for? Then you've come to the right place.


Grab This Button

And Then I Cried

We picked up a couple of extra kids on our recent trip to Oregon. (Just kidding, these belong to some good friends of ours in Portland.)

I'm starting to think every entry here could very well just read something like I went to [fill in the blank] and did [fill in the blank] and then I cried.

Before you lose complete patience with me, I'm not sad. I'm not depressed. It's just--life right now is so very full. And it just feels like it's all going by so dang fast. The littlest, most mundane things (a seemingly dry description of Ellie's kindergarten reading program) feel somehow, poignant.

Last night was Back to School night for Leo and Ellie. Since they are at different schools, Erin and I divided and conquered, with Erin at Leo's school while I went to Ellie's.

I love Ellie to pieces, but I knew Erin got the better deal. (To be fair, Ellie's been at her school all of four weeks and she's on the bottom of the totem pole whereas Leo? He's a big, bad, known entity of a third grader! Look out!)

First of all, any visit to Leo's school is a huge mood lifter/self-esteem booster as a parent. I don't know how we got so lucky with this kid but teachers, therapists, school secretaries, the aides to the aides, nearly all of them seem to love Leo. I'm not fond of the mayor analogy (so many kids with Down syndrome get called the "mayors" of their schools or towns--but hey, those cliches come from somewhere, right?). But I can definitely see how someone would could call Leo a "mayor" of sorts. Of course, this wasn't a parent-teacher conference meant to tell us how Leo was doing but more a way for us to familiarize ourself with his new teacher, class and curriculum.

But lucky for us, people at Leo's school (especially Leo's teacher new Mrs. F) like to talk. And they seem to like to say mostly good things about Leo. So we'll take it.

Photo by Rick Regan

I absolutely adore Mrs. F. She exudes enthusiasm and energy, is no-nonsense, has a great sense of humor and she likes to use the word "Oy." Yes, she had me at "Oy." This year already feels so different than last. Leo's in a true third grade, as opposed to a split. Rather than coming home with homework that requires cutting and pasting, he's reading paragraphs and answering complex comprehension questions. Every night we sign his Homework Planner.

Photo by Rick Regan

Did I mention I almost had a panic attack when I realized Leo only has two more years (after this one) of elementary school?

Photo by Rick Regan

On the Ellie front, I bring her to school every morning but haven't actually stepped foot in her classroom since last June's orientation, so it was fun to sit at her little desk last night and get a peek into her day. It's funny to say, but you get a little spoiled when you have a kid in special ed. There's just so more communication. Emails home, little notes in his folder. Aside from a wave and a passing "Hello" in the morning when I drop her off, I've had no real contact with Ellie's teacher (which, I'm told by my friends who have kids without IEPs, is just pretty much how it goes.) I mean, I'm sure I'll have a bit more meaningful contact, but probably not to the extent that I have with Leo's teachers and therapists.

In any case, I think I now officially know why she is such a blubbering hot mess by 6:20 every night. My oh my, they keep those little people busy. Ninety minutes of language arts? Math Centers? No wonder most nights she actually asks if it's time to "go upstairs."

I was relieved to hear there are "only" twenty kids in her class. I can hardly handle one five year old so I'm still trying to wrap my brain around how one person can even handle twenty, but still, twenty seems far more human than 28-30 (which I've heard of for kindergarten).

And yes, my eyes welled up a little as Ms. M. went over the different reading and math and social studies and science programs. How did we get here? To Kindergarten? Will Lucy and Harry pad into this same classroom in three and a half years? Time just marches and marches on. And then it seems to march on a little faster.

Beauty Sleep

Last night Ellie and I lay in her bed, post bath and pre-book. As she adjusted her pillows and blankets just so, I reminded her there was no school tomorrow (Yom Kippur) and shuttered inwardly at the reminder that our babysitter would be Home Alone with all four. Not my favorite scenario but luckily it doesn't happen often.

So I don't have to wake you up at all tomorrow! I practically cheered. As I've mentioned before, Ellie is...not a morning person. Unless there are chocolate chip pancakes involved.  You can sleep as late as you want, I exclaimed (knowing full well Ellie--who climbs in our bed every night around 1, would be awake at 5:45 a.m. like the rest of us, when the dual wails commenced).

Can I ask, once again, why is it that babies and children almost always seem to wake up earlier on weekends and holidays (when there's no school)? It truly is one of life's profound and unanswered questions. I reminded Ellie of this.

"I know!" She said. "They always wake up early and annoy the beauty sleep!"

She said it. Why is my beauty sleep being annoyed?

In spite of how it may appear by today's choice of photos, the babies do things other than eat. But they are most definitely in that stage where they are on the move so much that any picture of them where they are not contained is blurry. In other news, I don't have a fancy camera. Also, we didn't punch Harry in his left eye and he has not taken up boxing. You should have seen him by the afternoon the day this photo was taken (Sunday). Couldn't. Open. His. Eye. Thanks Mosquito Bite on Eyebrow! (Also, thank you Benadryl for helping out.)

Speaking of an aspect of sleep that is not annoying, bedtime for the babies continues to be fascinating. I am committing the ultimate sin here (talking about it on the Internet, therefore daring it to change) but I just feel compelled to record it here. The way it's been going is, one baby finishes a bottle (usually Harry sucks his down faster), I clean him up (you'd be appalled by how often these poor babies get actual baths), change him into his pajamas, take him upstairs and rock him/snuggle with him a little--I'm a sucker for an end-of-the-day-cheek-to-cheek snuggle. I just want to breathe them in. I then I plop him down in his crib and he immediately turns on his weird, blue light crib toy. I turn on the sound machine and music box, close the door and move on to do the same routine with Lucy.

When I bring Lucy into the babies' room, Harry practically cheers (if a fifteen month old did in fact cheer). He gasps and sort of laughs at the same time, as if to say "Hey! It's you! My roomie! Welcome roomie!" Lucy in turn, pops up (I always lay her down on her tummy) and seems to greet Harry. A bit of "conversation" ensues back and forth between them as I close the door.

We hear everything on the monitor. Sometimes there's a bit of crying. More like whimpering. Always, there is some kind of what seems to be dialogue between them, though they definitely also "talk" at the same time. Are they just doing what one baby would do (sort of, babble oneself to sleep) and it's just extra cute and unique because there are two of them? Is it some kind of secret twin language? Bedtime stories? Who knows.

I know it could all change tomorrow (and probably will tonight, now that I've blabbed to the world about it). There's probably some sort of sleep regression on the horizon and molars, but what can I say?  For now, it's just such a wonderful way to end the day after all those months in the beginning when bedtime never came and they seemed to just wake each other up all night long and I thought Oh My Goodness How Will I Ever Live Through This?

Their adorable sweetness here (seven days old) belies the fact that they didn't sleep for more than an hour at a time and took turns waking each other up. All together now: OY.

It Just Never Gets Old

Note to self about the above: Never forget how far we've come.

I surprised myself yesterday, at what was, I believe Leo's third "non-freakout" haircut. It's been almost a whole year since he first allowed someone to cut his hair without protest, without huge amounts of bargaining and bribing and brute strength. Longtime readers know, I cried actual tears that day.

And yet...yesterday, as I watched my "big" boy serenley play a Toy Story video game (his first video game--not counting iPhone games--he was in heaven) I still felt a little choked up. A little emotional. I didn't expect to feel that way. I'd dutifully packed the iPad (which is what had originally seemed to relax him, seemed to help him turn that corner of fear and sensory and who knows what else)  and yet, when asked if he wanted to watch a dvd or play a game? Leo chose game. I didn't even have to take the iPad out of my purse.

I briefly wondered if he would be upset when the cut was finished, that he'd have a hard time stopping the game--did we inadvertently add a challenge to what might be a potentially precarious situation? But no. It wasn't a problem. That was the Old Leo. The New Leo simply tossed the cape aside and hopped out of the chair (not before admiring his handsome self in the mirror first). OK, Leo did hug the stylist and tell him he "wanted to marry him" but hey, we pick our battles.

It's such a cliche, but it's true. Seeing how hard certain things are for Leo, knowing how long it takes for him to master certain tasks...it just means that when they do come, when he is successful, well that just never, ever gets old. And I never stop appreciating it. I wish things didn't have to be so hard sometimes, for Leo (and for us as his parents), but what I do feel extremely fortunate for is the fact that all those struggles have led me to appreciate the little, mundane tasks that are now so blissfully uneventful. A haircut. Imagine that.

Yesterday, Leo's biggest challenge? To squelch the giggles. From the tickle of scissors and stray hairs.

All those doctor and dentist appointments and haircut attempts where we exited in tears and knots of stress and grief and frustration: poof. Gone. I know friends who still struggle with this with their children and I know how hard it is and I know how painful it is to see other parents who completely take for granted the simple act of a trip to the dentist or hairstylist.

It's going to be OK, I say. He'll outgrow it. She'll get there. People told me this and I wanted so desperately to believe them. But sometimes? Sometimes the only way out is through.

Much

These two. Oh you guys. I think every few months I say to myself, Self, this is definitely the cutest age. With the newly walking and the "chatting" and the new word every four days, to say nothing of the peek-a-boo and the blowing of the kisses and the attempted head stands and the scaling a la Spiderman of the side of the staircase (hi Harry!).

The other night as I was reading to Ellie, I heard what I thought was crying coming from the babies' room. I felt myself beginning to read a bit faster, knowing in a few more minutes I might have to excuse myself and go rock a baby. Or two. That's when Erin poked her head into Ellie's room and said, "Do you hear that?" 

"Yeah, someone's fussing," I replied. What else is new? I thought, somewhat exasperated, at the end of another long day.

"No, they're laughing. They're in there absolutely cracking each other up," Erin said.

And she was right. After I finished reading to Ellie, Erin and I stood outside Lucy and Harry's closed door, giddy grins on our faces,  listening to two babies giggling. At each other. With each other. If you haven't had the pleasure of hearing this sound, I recommend you arrange to make it happen.

So Much. They are So Much in every possible way. So much fun, so much joy, so much laughter, so much whining, so much crying, so much mess, so much work and so much love.

The above shot was taken a few mornings ago. You'll notice the three of us had coffee together (see my beloved cherry mug at the bottom of the frame). Well, they had milk. I had Stumptown (of course). This was on a weekday morning. Before work and school. Without going into a lot of detail, let's just say that the above scene was made possible by the fact that we have a new childcare arrangement that is allowing me to...wait for it...breathe.

What a concept.

Happy weekend, to all.