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.

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.