Busy Guy

Leo has been doing some great work at school. I realize this post might only be interesting to about three other people (Hi Grandmas and Grandpa!) but I wanted to share this.

His handwriting is really improving. The inside of the Valentine's Day card he gave us:

For some reason this one cracked me up. It's a little hard to read. It was a project for Martin Luther King Day. It says "He had a dream." Awwww....

And this is just pretty. You can't tell here but it's three-dimensional and the heart stands about an inch tall. I need to find some kind of shadow boxy frame for it. I can't really believe that Leo rolled up all these little pieces of paper (sorry) but if they say he did, I'm gonna go with that.

Haircut SOS and Put Down That Book Mommy

I’m sitting here feeling very smug in my new $7 black corduroys. That’s right, seven dollars and they were not purchased at a thrift store. OK, so they were purchased at at a very un-PC store, a store that rhymes with Doll-Art. Ellie helped me pick them out and was excited to proclaim, as I took off one pair of pants to try on another, “Mommy, you don’t have pants on! Your legs are naked!” And bless her heart, she told me all the pants were “too big” even when they decidedly were not. Ahem.

It was a good weekend. Ellie has taken to announcing every night when I pick her and her brother up “No school tomorrow!” so it’s nice when on Friday night I can say “That’s right Ellie! No school tomorrow.”

Ellie took marathon naps both days. It was warm enough to play outside both days. I wonder if my kids are the only ones on the eastern seaboard who ask to eat snack outside. They love to sit at the little table on our deck, fully adorned in snow suits and hats and gloves, and eat applesauce. But this weekend, it must have been 45 degrees with the sun out. I felt like busting out the tank tops and the margaritas. The snow is thinner every day and grass is finally visible after weeks of tundra. We're getting there.

We had grand plans for haircuts for both of the kids (Ellie, to be taken to the mall where she can sit in a pink car with a sucker and Leo, to be held down in front of a never-before-seen Dora episode, with me dangling an ice cream cone). I joked with Erin that I was thinking about trying to find a straight jacket on eBay that might prove useful for a Leo haircut attempt. I was actually only half kidding.

But really, it’s not so funny, because Leo’s hair is reaching new levels of never before seen ridiculousness. I tried to cut the back (which has, as I’ve mentioned, been shooting towards mulletness with frightening speed) while he was sleeping. But he’s so squirmy and so the result was, well…

So we called Leo “Carol” all weekend. And he didn’t seem to mind.

In addition to having bad hair, Leo seemed a little under the weather all weekend, fighting a cold. I thought we'd turned a corner, his cheeks hadn't taken on that scarlet red, chafed appearance they have every other winter of his short life, but finally, the raw redness seems to have struck. I'm buying stock in Aquaphor and chasing him around the house with tubes of it (which he loves, I assure you).

Leo was equal parts cuddly and grouchy on Sunday. There were a lot of outbursts followed by “sorry” and hugs and attempts to crawl into laps. I came home with a stack of promising books at the library and made the foolish attempt to read while he watched "Curious George: The Movie" (another library find). Leo has sonar when it comes to my reading. I can load the dishwasher, mop the kitchen floors, vacuum the entire house and cook a four-course meal while he watches television, but if I make the mistake of trying to read a book of my own interest (i.e. not a picture book) in Leo’s presence? No chance.

In other Leo news, Erin found Leo in his room fully dressed this morning.

While the rest of the house slept, he put this little number together, all by himself! It even matches. I had to quell the OCD mom tendency to change that shirt (it has a few little stains around the neck and it’s technically reserved as a “pajama only” shirt). But Leo was so proud (as we all were) and so I didn’t have the heart to make him put on something else. The shirt truly is him. It's yellow(ish) (his favorite color) and, well, "Bear Hug." I can't think of a term that sums up Leo more than that. He can get violent when I come at him with that Aquaphor, but ultimately, he's a little hugger.

Taking a Breath

And then, the clouds parted.

What a week.

I’ve had a few decent nights of sleep, several cups of coffee and a good amount of wine (not all of those beverages were consumed this morning, don’t worry).

I made scrambled eggs for Leo yesterday morning, even though there really wasn’t time. That night I let Ellie have the stray Valentine’s Day sucker I found in Leo’s backpack even though bedtime was in twenty minutes (is it true about sugar amping them up? I really haven’t decided. The girl sings and dances in her crib most nights until 10:30 p.m. anyway…)

Last night Leo and Ellie built hayrides way beyond bath time. Erin took them upstairs and the living room had that slightly tornado struck look. I quietly loaded all the Little People back to their appropriate places and went upstairs to join the splashing and the bubbles.

This morning (and every morning this week) Ellie and I drove to school with “Baby Beluga” on repeat. “Mommy it’s my favorite!” she says. Really? I hadn’t noticed. She commands me to “Sing Mommy! I will sing with you.” And of course, I do it. Not a bad way to start the day, is it?

I’m trying to relax a little. The heavy thoughts are still there. I’m acknowledging them but not letting them torture me.

Amidst all of this, I stumbled upon a wonderful quote that I have not been able to get out of my mind since I read it (and in this case, that’s a good thing). Can a quote be that powerful? It can be for me. I'm a professed quote junkie. It just fits everything I’ve been feeling lately (with credit to Cate who first introduced me to it). I’m headed to the library this weekend to check out both books by the author, Kate Braestrup. The passage below is from Marriage and Other Acts of Charity.

One hundred percent of marriages end. As long as we're being brutally realistic, however, why not admit the whole truth? One hundred percent of all relationships end: paternal, maternal, spousal, avuncular, friendly, or filial; one way or another, you will lose everyone you love, everyone you cannot bear to lose.

One response to this appalling reality is to posit the existence of heaven, a place where everyone gets to be together again, just like the old days (though, as my friend Moira declares, in heaven her husband is going to fold laundry).

In the meantime, however, what are those of us still here on earth to do in the face of loss? Jesus has some advice: When he is no longer physically present, he tells his disciples, then those who really loved him should go on to love others -- lots of others -- just as they had loved him. "Inasmuch as ye have done it unto one of the least of these, my brethren, ye have done it to me." If you can't, in fact, go on to love others, you never truly loved him to begin with.

But you don't need to take it from Christ. Maude in the movie Harold and Maude says the same thing: Love more. Start with your siblings, or your spouse, or your parents, but don't stop there. Love whoever needs what you have; love the ones who have been placed in your path.

It seems so obvious, doesn't it? It is the kind of knowledge we all should know, and instead even the wisest need reminders. Fortunately, the reminders do come, from sages and prophets and out of the mouths of babes: If your heart breaks, let it break open. Love more.

I'm trying. I'm really trying.

Grateful and Raw and Snow Days Too

I’ve been feeling raw since last week. Raw.

It’s just the only word that describes it.

I’m torn between feeling overcome by the beauty and preciousness of life and terrified of having the other shoe drop, for something awful to happen. It’s no way to live.


I find myself hovering over the kids as they eat, calling over and over to sit down, stay in their chairs, to take tiny bites. I’ve started cutting oranges up into small pieces rather than simply peeling them and laying out plump slices like I used to. Remember, my kids are five and two. Am I nuts?

It’s just impossible for me to not feel so grateful. Grateful for snow days and two little bodies who sit like bookends, enthralled by "Super Why" (Leo’s latest obsession and I swear it’s way more educational than Sesame Street—it’s really quite an amazing show, check it out). I feel almost no TV guilt when the kids watch it and bonus: even Ellie likes it).

I feel grateful for these warm little bodies that beg for macaroni and cheese and more grapes and smoothies. I feel grateful for these little people who cheer because they get to go to Trader Joe’s or even better, the "slide place."

There’s that lingering, shadowing little tug. Why do terrible things happen sometimes? And why do they happen to one family and not another? And why shouldn’t they happen to us?

Like I said, it's no way to live.

And I don’t just worry about the children when they’re eating. Leo’s always been a wanderer. I’ve always had to watch his every move. He listens to me about fifty percent of the time. But he certainly cannot be trusted. The fence we had installed in the backyard two summers ago was the best money ever spent, but I still worry. The boy is clever. He’s been known to push a chair up against a fence and at least attempt an escape route.

Last week while playing with the kids in the backyard on one of our two snow days I looked away from Leo for thirty seconds while I helped Ellie clear snow from the slide. I turned around and Leo was simply, gone. The backyard was filled with an eerie silence. Believe me, Leo makes his presence known, always. He was no where to be found and instantly, that sick fluid of dread rushed through my veins as I began screaming Leo’s name, maniacally. I can only imagine what the neighbors must have thought.

And not even thirty seconds later I found Leo inside, sitting on the the kitchen floor, a tangle of limbs, stripping himself of his snow suit, shaking off his boots and gesturing toward the cupboard. Apparently, it was snack time. Outside play was over for him.

Thanks for the heart attack Leo.

I blame all of this for the fact that I knew I would be attending the funeral of a three-year old boy later in the week.

And an irony in all of this is that there was a time in the not so distant past when Down syndrome loomed as the huge, terrible, awful thing that had happened to us. There were so many days of why us? Why him? And now, Down syndrome just is. It might complicate things sometimes for sure, but it is no tragedy. It's amazing to me to think about how it once was.
***
So yes, there have been snow days and futile feeling “work from home” days where entirely too much TV was watched by the short people in the house (by necessity). No, really.

And snow days meant a lot of “Hayrides.” My expectations for a neat house plummet on a daily basis:

But in light of everything, I can honestly say I wouldn’t have it any other way.

Snow days have meant I have cooked real dinners: chicken Parmesan and cheese enchiladas.

There have been harried days back at work.

Valentine’s Day came and went and I felt like a complete schmuck when I realized I totally forgot to do anything about it for the kids this year. Yes, those cheapo drugstore Valentines are annoying and get thrown almost directly in the garbage (I mean recycling bin) when they arrive home, but aren’t they a right of passage?

Yesterday I found, crammed in Leo’s backpack a gigantic handmade, heart shaped envelope, a “holder” for Leo’s Valentines.

He had four. FOUR valentines. Three of them were from his teacher and the two class aides.

I know I am totally over thinking this. For goodness sake Leo only has five kids in his class, including him! But still. I want him to be the popular kid. I want him to have cards from dozens of children. I want him to have friends. What about all the kids from music and PE and art (Leo attends all those subjects with his “typical” peers). Where are the cards from them? Am I just deluding myself to think that any of them would deign to be friends with Leo?

Or maybe it’s just the general rawness of late. I’ll weep for anything.

Even gratitude.

When There Just Isn't A Reason

To borrow the words of Cate, the very worst thing has happened to a family at Ellie’s school. One of her classmates, a sweet just-turned-three-year-old boy with saucer shaped brown eyes and jet black hair, choked on some food at his home last week. He remained unconscious and was in the ICU for five days. He died on Saturday.

I haven’t been able to get this little boy or his family out of my mind since I heard the news. It’s just so shocking, so sudden and so completely tragic. There’s no way to justify it (as though death can ever really be justified). What happened to little R. could have happened to anyone. To think that one day he was just doing his three-year old thing, playing with his friends at pre-K, finger painting, dancing to “Baby Beluga” and the next day his loved ones and teachers from school were gathered around his bed in a hospital, hoping for the best but preparing for the unspeakable.

The accident and his hospitalization had been announced with a note home to all the parents (though I learned of it when I ran into one of the head teachers and asked her if she was OK. She’d looked pale and exhausted and immediately told me what happened). That was a week ago today.

R’s death a few days later was announced with a simple, small post card sized photo on the bulletin board at school. The picture showed him working on Play Doh at that familiar table where Ellie eats breakfast every morning. “In memory of our Purple Penguin, R.” [the Purple Penguins is what Ellie’s class is called].

When I saw it, my heart sank, my limbs filled with a heavy, cold dread..

Later that day, when I arrived to pick the children up after work, a large photo montage of R. had been erected in the school’s entryway. There was R. last summer on the playground with Ellie and four other adorable, cheesy-grinned preschoolers. There was R. on Halloween, dressed as a Power Ranger. There was R. in his school “portrait,” holding a paint brush, poised for a masterpiece.

“Oh! R.!” Ellie squealed, when she saw the montage. “Where R.?”

My mouth was frozen. What to say? How to even begin? I keep meaning to ask the administrators how they plan on explaining what happened, to the children. I can see the older ones (four and five year olds) at least sort of “getting” it, but Ellie’s class? The one R. was in? How much can they comprehend? And how do explain death to a two and a half- year old without completely terrifying her?

Talk about a “lesson” that has come way too early.

I think the school director put it best. We were talking about whether the school had enough parent volunteers to watch the children so the teachers could attend the funeral (the school had put a request out for this). He said they had plenty, that not all the teachers even wanted to attend. They’d visited R. in the hospital and gone to the wake. Those things had been enough, and had taken so much out of them. It had all just been too much.

Finally, the director said, simply,“It just doesn’t make sense.”

I couldn’t agree more. With all my heart I want to believe that everything happens for a reason. I’m not a religious person (I prefer the term spiritual or hopeful). But sometimes, the whole, trying find the reason for something…it’s impossible. Life is wonderful and lucky and fortuitous at the same time, sometimes cruel and heartbreakingly brief.

And sometimes, life just doesn’t make sense.

Live From New Orleans

As I write this, my boy is down in New Orleans, preparing to watch the Super Bowl with extended family. He spent the morning eating his weight in beignets at Cafe Du Monde, taking a hayride (his term for a horse drawn carriage around the French Quarter), and taking in the live music. Yesterday he went to a Mardi Gras parade with his cousins.

Word is, (no shock here) New Orleans is one big party. Scratch that: HUGE party.

I assure you, Leo is having a fantastical time. For those not in the "know," beignets are extremely sophisticated Munchkins. And you cannot die before experiencing a fresh one from Cafe Du Monde in the New Orleans' French Quarter (along with a cup of midnight black chicory coffee).

My only question is, why does Leo look so forlorn in this picture? Amy has asked a version of this question before. It seems like people with Down syndrome look (at least by appearance) either overcome with happiness or supremely forlorn. I hate to generalize, but...

Oh wait! No THIS picture is more like it. Look at my boy! Loving the fountain by the Mississippi River.

Today is a day to party, no matter who wins.

Go Saints!!!

"Boobies," the Potential End of a Political Future and Live! Nude! Girl!

That got your attention, didn’t it?

It’s been so quiet around here lately! Where is everyone? Have we all succumbed to mid-winter/post holidays/pre-tax refund (or bill-gah!)/malaise?

In any event, I hope everyone is OK.

We are plugging along.

Last night, Leo did. Not. Feel. Well. He whined in agony when I told him it was time to turn off “Yo Gabba Gabba” (damn you Nick Jr. for your uncanny ability to advertise “Coming up next! Dora the Explorer” at the precise moment that I set dinner on the table.)

Sidenote: We are late to the Yo Gabba Gabba party. I put it squarely in the “shows that mesmerize kids to the point that it’s creepy" (is it mind control?) but still, is there anything cuter than Leo, bolting off the couch so that he can join his Yo Gabba buds in their dance moves? I know, I’m biased.

Speaking of Nick Jr., they are currently running a segment on homemade smoothies. They're simple enough to make and I'm already a big smoothie maker, but whenever Leo sees this ad, he comes straight to me and demands, simply: "Boobie."

So I’m choosing to ignore the tell-tale very faint beginnings of some kind of…rash on his face. I’m in complete denial that Leo might have strep. Again. He didn’t eat a bite of dinner last night and I didn’t push the subject (I’ll admit the leftover pizza and frozen fish sticks were not all that appealing but I do think there was something else going on).

After a good five minutes of a pathetic Leo lying silently, tummy down on the love seat, I went to him and held him. I asked him if he wanted to read a book and he agreed. He asked for juice and we read a sing-a-song Sesame Street book and that seemed to perk him up a bit. A few minutes later Ellie padded over to us, cheese pizza crust in hand. An impromptu after dinner (or in Leo’s case, dinner replacement) sing-a-long was born.
***
Upstairs, we sped through bedtime preparation, skipping a bath. I didn’t want to miss the window of tiredness with Leo, though I didn’t think there was much chance for this. At first he refused Tylenol with a stomp of the foot. I didn’t push it, and 30 seconds later he approached me. I honestly think he knew it might make him feel better. He’s getting old enough to know. Or at least I think so.

And then Leo fell asleep on the toilet.

I hope I’m not endangering Leo’s future political career with this news, but it truly was a sight to see.

Meanwhile, Ellie was busy with the constant running dialogue that she provides to life. It’s truly comical: “When I was sick I went to the hospital because I threw up when I ate the cupcake from the bookstore...Mommy you have a boo-boo...I kiss your boo-boo...” (all true, by the way). Leo was in and out of consciousness atop the commode, watching Ellie with humor and bewilderment and a general look of “does she ever shut up?” on his face. (The answer, bless her heart—is No).

"Oh Mommy!" (Looking at my bathrobe) "You have a pink one!"

Once in bed, Leo fell asleep in less than a minute (a new record, I think).

Ellie…did not.

I took a shower. I cleaned up the kitchen. I let the dog in. I let the dog out. I let the dog in. I put away all the laundry (yay me!). I ate two oatmeal chocolate chip cookies and drank a mug of milk. I watched “Life Unexpected” (eh…I like. I don’t love it. But I’m hanging in there. I’m enough of a sap to be patient and to appreciate the sentimentality of it. If nothing else I enjoy (and get a little teary/nostalgic) all the shots of the Portland skyline.

All the while, Ellie sang. Ellie whined. Ellie chatted. Ellie dropped and called out for her “pink bobby” (her word for pacifier, I know, I know, she’s 2 ½ and still sleeps with a pacifier. Shoot me. It makes her happy. I am big on “life is too short, and if it’s not hurting anyone…”).

It was nearly lights out (for me) at 10:30 and the little chanteuse was still going strong. I figured I could just leave her couldn’t resist checking on her.

And sure enough, when I opened her door a sliver. Birthday suit city.

I don’t know what it is with the late night singing and nudity with Ellie. I will say that she’s very cooperative and seems to be in on the joke. She knows exactly what she’s doing. She has been known to fall asleep naked (she wakes up when I try to dress her so it’s better to catch her before she falls asleep).

There was gleeful skipping into the bathroom, there was galloping back to the bedroom for a brief haggling over pajamas (No Mommy! I want the pink ones!). And there was blissful contentedness to be tucked in with two blankies, two bobbies and Cleo.

And then, eerie, miraculous silence.
***
Leo was fine this morning. Granted, he didn't eat his waffle, but he drank his "boobie" with abandon and later ran to the little yellow bus with a spring in his step. Today at least, there was no (feared) call from the school nurse.

And hopefully, tonight will be better than last night. For Leo and the little diva songstress.