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.