Wednesday, April 27, 2011


Our vacation was wonderful, I have to say. Absolutely amazing. Perfect? No. Relaxing? Not a chance. But lovely, nonetheless. Gatlinburg, Tennessee and nearby Pigeon Forge have got to be the kitschy-est places I have ever set eyes on. They make Hampton Beach or the White Mountains tourist areas look like child's play. Especially Pigeon Forge. Eeesh. I had sensory overload, never mind Ethan, but we had a darned good time. We did mini-golf and go karts and a mirror maze and the Gatlinburg Space Needle and Dollywood and saw old friends and oh yeah, hiked in a national park and even saw bears. The ride was incredibly long and I ate way too much fast food and I wouldn't change a thing about the week. Even the two hours the power went out in our hotel right at bedtime. An adventure it surely was.

Walking in the Smoky Mountains one muggy afternoon, something came to me as we trudged on the path, looking at the stones. Suddenly I felt inspired to write a poem again. I got into poetry in the 90s during college. Most of them were awful. Then I found my voice, and they were, well, maybe not publishable, but not so awful.

After walking that day, I felt inspired to write something poem-like for the first time in about a decade. So I jotted it down on a piece of hotel paper. Only I don't know what to do with it, and I don't know exactly what it means, and it's not even that poem-like. So I thought I'd share it here:


This is the moment that I knew.
Walking down a dusty, winding trail that seemed unending,
I looked down to the ground and saw stones.

And no matter how I looked, I saw the shapes of hearts in them.

Some were rounded to perfection, the way a heart should look.

"I will call her perfect," my daughter said, slipping the pebble into her pocket.

But others had more jagged edges;

were lopsided, not smoothly formed.
I did not pick them up but padded over them and smiled,
looking on to the clearing, the way out of all the trees.

Tuesday, April 26, 2011

No Conditions

Two scenes:

On vacation, we approach the mini-golf place, one of those over-the-top touristy greens with a waterfall, bridges, caves, and (this was new!) a train to take to the starting point. I'm full of trepidation, wondering if Ethan can do it, wondering if I should go separately with him and play up the fun of putting the ball in the hole (he adores holes), but soon I realize there's no need. Yes, he's impatient and wanders a bit and doesn't hit the ball the right way and wants to steal other people's balls, but overall he GETS the general concept, and even better, he LIKES it. I feel a sense of victory. I'm all smiles, thinking about another obstacle reached, another family activity we can feasibly do together, something else we are not restricted from.

The other, back home from vacation, in our play room. I have spoken about this before. There are toys in bins and baskets and on the shelves, puzzles and books and musical instruments and computer games. Ethan decides he does not want to play with them but to crash and smash them. Blocks go everywhere. The books are tipped over. The toy food from the kitchen is spread all over the place. The new gear toy is not put together but dumped out. Everything is mixed together, and I hear the familiar voice tell me that it's a shame we have all of these toys and they're not being played with, or even worse, the voice taunts that maybe Ethan will never really learn how to play with toys. I find myself angry, annoyed, discouraged.

It's a mixed bag, this autism thing. More than that, it's a choice -- what to dwell on? The successes or the areas that are slow to improve? And today, I was reminded that it's a revealer of the heart.

I am doing a Beth Moore Bible study on David. In today's lesson she made the point that our righteousness is not based on our behavior, but our belief. This screamed out at me from the DVD we were all watching. "This is a little hard to swallow, I know," she said, "for the Pharisee in all of us."

The Pharisees were all about conditions. They were all about outward appearances and coming across as holy and doing all of the "right" things, no matter how dark and callous their insides actually were.

"A performance mentality," is what our old church used to call it, using big "Christanese" from the nineties. This meant you did things to earn God's love rather than remembering His grace. You lived as if love was conditional. And maybe, you loved conditionally too.

There is nothing wrong with celebrating Ethan's successes, but some days I have to stop myself. I have to think about where my joy or frustration is coming from. I have to make sure I'm not mixing that up with love.

I was one of those "goody two shoes" kids who got good grades and never made any trouble. Sometimes I wish I had, because maybe I needed a chance to really mess up to realize that I was completely loved despite my failings...and even if my parents weren't able to provide that kind of unconditional support, God would have. Sometimes I feel as if I need to dip into that river of complete grace, because without receiving it, we can find it difficult to extend to others.

After the study today, I was painfully reminded of the way my feelings about others, even my own family, even my son, are sometimes based on how their actions are making me feel. That's love with conditions. That's the Pharisee in me.

What do I do? I asked God, honestly. I was asking specifically about my ongoing frustration with Ethan not playing the way I wanted him to play, but I could have asked, what do I do when Ethan's not doing what I want him to be doing, or Dan, or friends, or whomever?

Let it go, was the answer that quickly came. Just that. God's answers are often simple but not easy. Let go of the control, of the conditions, of my agenda. Like I wrote when I started this blog, open up my arms and let all of that go. But hold on to the grace. Learn to receive His love without conditions...then learn to gracefully extend it, like an open hand.

Saturday, April 16, 2011

Thoughts Before Going

We’re going on vacation today, and yesterday I realized I couldn’t find my camera. I did the usual frantic search around the house and backtracking. I fretted because, not only were we going on vacation, but I wanted to do this huge Easter egg hunt with the kids in the backyard and take pictures, because spring has finally arrived, gosh darn it, and I needed to capture typical spring moments with the kids on camera.

An hour later, I was resigned to buying a new camera that night, reminding myself that the old one had been on the fritz and was probably going to die on our vacation anyway, most likely during a must-see moment, which would be even more frustrating.

I was still a bit glum about not being able to take pictures off the egg hunt. Spreading out plastic eggs in the backyard, an image came to me. I was at the victory parade in Boston in 2004 after the Red Sox won the World Series. It had been an ongoing “joke” in our family that if the Red Sox ever won the World Series, we were going to go and dance in the streets of Boston. When the moment actually came, I knew I HAD to go. No one else went through on their promise, but I was there, because I had to see the moment, I had to capture every last bit of it, and so there I stood on the streets near Fenway, and the experience was incredible – the crowds, the feel-good feeling in the midst of a dreary fog, heck, even the man near me holding up a curse of the Bambino makeshift coffin in his arms.

The victory parade was everything I’d always hoped it would be. Except for the moment when the Red Sox actually went by. In that relatively brief instant, I found myself juggling both a video camera and digital camera (at the time an older model that did not have video), racing to get shots on both, being jostled by the crowd, and eventually realizing that in the bustle of trying to capture the moment, I’d actually in some ways missed the moment.

As a kid, I didn’t document vacations, I just lived them, the way we all did. I didn’t need a camera to bring to memory the sounds of the motor boat on Flying Pond at our camp in Maine. In the dead of winter when I’d hear snowplows push by at night I’d scrunch my eyes tighter and imagine for a moment they were the sounds of those boats on the lake on the bluest of summer days. My mind alone took a picture of the mountains you can see as you crest over the hill from Vienna into Farmington, or even the people who would stand on highway overpasses on Sunday afternoons, waving goodbye to all of the vacationers driving home. As a kid, I wasn’t trying so hard.

Our vacation will probably not much resemble one of those you might see on TV (who's really does?). We are going on a very long car ride and I have no idea what Ethan will think of all of this (last time at the hotel there was much light switching and toilet flushing). Maybe we won't have a million Kodak moments. Maybe we'll have three. Maybe I'll put down the camera and just give my kids a hug.

Last night as the sun set the kids found their eggs and ate too much candy. Later I bought a camera at Target in about five minutes. Vacation is here and I'm just going to live it, not live for it, not mold it. Bring on those Smoky Mountains!

Wednesday, April 13, 2011

Rooster, Part 2

Yeah, I'm writing about roosters again. Who would've thought?

The other day we had the good old red Fisher Price rooster out once again, and all of the sudden a song leaped back into my memory.

My mother's parents divorced when I was a baby, and my grandfather remarried Marion not long after. We didn't visit them often, and when we did I felt as if I didn't know how to relate to Marion or my grandfather. I felt as if I didn't know them; like they were strangers. But there was this one day we were all sitting around and Marion (who was very musical and liked to sing) took out a guitar, and suddenly we were having a sing-a-long. She knew a lot of folksy-type songs and one of them happened to be about a rooster. Out of all the songs we sang that evening, the one that always stuck in my head was the rooster song, which went something like:

I love my rooster my rooster loves me
I cherish that rooster 'neath a green bay tree
My little rooster goes cock-a-doodlE-doodlE-doodlE-doodlE-do...

(If anyone really cares, this song was apparently sung by Almeda Riddle in 1962, although that's sort of an irrelevant point here.)

So there we were playing with the rooster again when this song came to mind out of nowhere, and I started singing it for Ethan. He LOVED it. He asked me to sing it again. And again. Then he started trying to sing it. And now this song, from a moment that literally had not surfaced in my mind in years, has become a household staple.

There are things that happen to us that remain dormant for a time, only to be revived at just the moment when we or someone else need them.

My grandmother, my Nonna, and I were very close. It was hard to watch her slip into Alzheimer's about 15 years ago. One of the most challenging moments came when my dad and uncles had decided she needed to move into a facility -- she wasn't safe at home. I was on the phone with her one day, and I can remember it clearly. It was May; spring was coming alive. Five years from that May Nonna would pass away. But that day she was still in the stage of being able to understand she did not want to leave her home and everything that was familiar. "Why are they doing this to me?" she wailed to me on the phone, wanting me to do something. "I don't want to go there." My heart was breaking. I didn't know what to say. The moment troubled me for some time. Eventually it moved to a less prominent place in my mind.

This past week at Bible study one of the women there mentioned her ongoing struggles with her husband with Alzheimer's, who she just placed in a nursing home. "I'm dealing with a lot of guilt," she told us, and we were interrupted before anyone had a chance to really listen or encourage.

But driving home from the study, that moment with Nonna sprang back to me, clear as day. I can talk to Emily, I thought. I can tell her I have had just a glimpse into what she's facing. And who knows if that glimpse years ago was indeed in part FOR Emily?

How would we live, or how much better might we live, if we knew everything that happens to us will not be wasted? I think sometimes a great deal of our suffering comes from much of it not seeming to make any sense or to have purpose. When we acknowledge that God's ways are not our ways, and His thoughts are not our thoughts, we are not just conceding that this vague tide of experience we all have is part of some huge master plan -- but that God even sees the details. God saw me at age 9 singing a song about a rooster, and knew someday I would pull it out for my rooster-loving boy. And when we cannot see or know, God knows how the heartache of the present will build something in us, not just for us, but for someone else who at some point in time will also need it.

In the book An Unexpected Joy, a mom writing of her son's autism says something along the lines of, "I've learned that if I don't understand what's happening to me, it could be that it's for someone else."

Nothing that happens to us is pointless. Nothing is wasted.

"And we know that God causes all things to work together for good... - Romans 8:28

Saturday, April 9, 2011

Laughter and Tears

Last week I was having a kind of weepy day, one of those stretches of time when honestly, I was not very fun to be around. The thing is, I was tired of feeling that way, but couldn't seem to snap out of it. I mean, I did enough to act like a grown-up. But inside I still felt utter crap.

After lunch somehow Ethan and I got playing with the toy animals and farm. This doesn't happen very often, as I've kind of given up pushing too much traditional "pretend play" on Ethan unless he's really interested, especially pretend play that doesn't involve trains or the Wonder Pets. But for some reason Ethan wanted to take out the barn, and then smash the barn (which I turned into "Ethan the Monster smashes the barn!") and it was good, really good. We had a mommy, daddy, and baby horsey. We had some sort of strange game going that would alternate between the toy animals and Ethan turning into a monster and trying to eat me. And we had Ethan's rooster.

You could say there is an ongoing joke about Ethan and roosters. When he was a baby, he used to come out with this strange cry in which he'd appear to be not breathing and then let out this squelched, squawking noise that indeed sounded very much like a rooster. After awhile we'd call him that sometimes -- rooster. So go figure that Ethan would grow to love the rooster most of all, on real life barn visits or in Farmer Old McDonald's role call of animals. Rooster always has to go first in the song. Ethan often goes back and forth on whether or not the rooster should make a ho-hum "cock-a-doodle-do" noise or the more realistic squawk, which I just realized I can't really figure out letters for. And he suddenly likes his Fisher Price red rooster.

So we were playing on the floor and Ethan was announcing, "The rooster says..." and suddenly out of his mouth came the largest burp I'd ever heard him utter.

I am not usually the one to get all goofy over bathroom humor or bodily functions but at the same time both Ethan and I found this hysterically funny. "The rooster says -- BURP!" he said again, and we both doubled over. Then I said it. Somehow, this wasn't getting old. Ethan was laughing so hard he could barely breathe. So was I. I was, in fact, laughing so hard there were little slivers of tears in my eyes. "The rooster says -- BURP!" I felt like I was in seventh grade again, almost peeing my pants in the Springfield Library because my friends and I had photocopied our lips and given the paper to a cute boy. Pure, unabashed, foolish, silly, carefree laughter.

Children laugh hundreds of times in a day, I recently read. As I sat there on the floor in hysterics with Ethan, I realized how badly I needed to laugh more. Maybe not hundreds of times. How about more than 10?

Later that very night we were reading "The Very Busy Spider" and Anna was getting in on the fun. By fun I mean that we realized Ethan has this uncanny ability to well, emote. Whenever we'd get to the last page of the book ("Whoo! Whoo!" said the owl. "Who made this web?") Ethan would suddenly say, "It's night time." (The last page switches from day to night.) And his face would get long and sad, and he'd whisper something about the book being all done, and he'd have actual, honest-to-goodness tears in his eyes. Two seconds later, if we went back to the front of the book, he'd transform in a happy, cheerful boy once more, ready to read.

This turned out to be a fun game that Anna and Ethan decided to play over and over, going straight to the end of the book, jumping from laughter to tears and then back again. I sat there, on the kitchen floor of all places, and got to thinking. First, I was amazed at Ethan's understanding of emotions. These autism cliches are often, well, just that. Not every kid with autism does not understand facial expressions, or I should say does not lack the capability to comprehend facial expressions and emotions. Earlier in the day during our rooster/monster game, Ethan had asked me to do the surprised face when the monster was acting bad, and the scared face. Yes, it's true this is something we've talked about and I've had to specifically model in the past. Maybe it didn't come as naturally to him. But with time and a little practice, he's "getting it."

But more than that I was thinking of the very fine line that exists between laughter and tears...about the way a good laugh can bring the tears on, and about how smiling at something and interrupting a good cry can make all the difference in one's demeanor. If only we could realize how fragile each state is. When we're having one of those belly laughs, when we're just exploding inside with joy, if we could just remember to make it last, to hold on to the moment, because that times is fleeting. But in the same respect, when we are in our greatest moments of despair, when the world seems bleak, when we feel as if the tears may not stop, when the hurt feels so is closer than we think. Laughter is lurking somewhere just on the other side of things.

I love the way laughter and tears do this wonderful dance. They are intertwined the way our lives are wonderfully, painfully, beautifully woven with both sorrows and sweet moments. And whichever side we are dwelling on, we would do well to remember, "this too shall pass."