friday haiku

the first fresh basil
tomato mozzarella
now summer begins

sheer determination

Before Elliott's nap today we took a walk down Papa and Gigi's long dirt driveway, looking for toads and acorns and butterflies. I watched him run ahead, crazy hair flying, still matted with glue from the 48-hour EEG he completed 20 hours earlier. Other than the crusty remnants in his hair and little red welts on his scalp, there is no evidence of the painful experience this four year old endured. Kicking up the gravel, he was happy, jubilant even, and determined to get his mama to continue the walk.

"This way," he said forcefully, pointing at the dirt road that leads to the county road.

The sun was bearing down but I smiled and said yes. Elliott trotted on.

When we reached the end of the private dirt road, I tried to steer him back to the house.

"No," he said stubbornly. "This way." He pointed down the paved county road.

"No, Elliott, this road is dangerous," I told him. "Cars go fast. And we need to go back to Papa and Gigi's."

"No," he shouted. "This way." Then he sat down in the gravel.

I offered a treat. No. A boat ride. No. Tubing. No. To look for deer. No. Elliott stood his ground.

"Hmm," I said and gave him a sly grin. "How about we take some of these rocks and go throw them in the lake at the fish? Do you think you could hit one of the fish?"

"Okay," he bounced up, grabbed two handfuls of gravel and started running back down the road toward the house. "Rocks at fish," he called.

This is my son: stubbornly determined, but if you come up with a pleasing option, he will happily change course. He is exceedingly adventurous, never bored and rarely sad.

Sometimes I think he could endure almost anything and still emerge resilient and happy.

On Friday night, over 24 hours into the at-home EEG test, Elliott was growing weary of being wired and hooked up to a video monitor and he absolutely didn't want to go to bed. At 8 pm we tried to lay down. At 9 pm we came back downstairs and tried to watch a movie with Andrew and Liam. At 10 pm we went back up to bed. He was restless and whimpering. He sobbed himself to sleep. I very nearly called it quits and took the EEG off.

This test is ridiculous, I thought. It's never going to capture what the neurologist needs to see. In 6 months we have only witnessed a seizure-like episode twice. The chances of seeing it now were slim to say the least. There was no way we were going to subject our four year old to this anguish again. No way I would watch the happiest boy in town cry his heart out and be able to do nothing to help him.

We had promised Elliott we would go to Papa and Gigi's lake house on Saturday and when we arrived we would take the wires off his head. We thought this would help him understand there would be an end to the misery. Elliott was mildly consoled by the promise of a boat ride and deer sightings and a candle to blow out on his Sunday morning cinnamon bun.

I considered taking the EEG stuff off before we left, allowing him to enjoy the four hour drive, but we had made it this far. 48 hours was in reach.

An hour and a half from the lake, in the midst of a nap, Elliott opened his eyes. It was soon clear that he wasn't awake. He began the strange repetitive behaviors - head lolling, lip smacking, eye rolling, muscle twitching - we had seen only twice before. The worrisome episodes that brought us back to the neurologist and led to the awful EEG in the first place.

If you have ever seen a child endure seizure-like behavior, you know how it quickens your pulse and makes your blood run cold. There is no way to rouse him. Nothing to do. Elliott's went on for more than 20 minutes. And it was all recorded on an EEG. It was a miracle. An impossible miracle.

There are moments, like yesterday in the car, when I think we should be much more worried about Elliott. About the fact that his nystagmus (eye shaking) is becoming more frequent. That his seizure-like episodes are increasing in duration. That he still can't carry on a conversation in more than two- and three-word sound bites.

But there are also moments, like yesterday in the car, when I am reminded that there are small miracles. That we will get some answers. That our tough and determined little boy can endure.

And that, even when Elliott stubbornly wants to go "this way," we can still find happy ways to turn him around.

friday haiku

every distraction
failed, after three hours
of crying, he sleeps

some thoughts on marriage

This weekend my cousin Noel got married. The ceremony and reception, held at our favorite local farm, were near perfect. In my view, few weddings come close to the awesomeness of ours. Noel and Robyn's was one of them.

Several weeks ago my family held a bridal shower for Robyn and I was asked to prepare a reflection on marriage, some words of wisdom to share with this bride-to-be as she embarks on her new journey with Noel. Although 2011 marks ten years of marriage to Andrew, I feel about as far away from expert or even experienced as someone who is just beginning. Even so, I have definitely learned a few things. (Not that I always follow my own advice, of course, but I try to/want to/hope to.) After reading the first third ("the beginning") of the wonderful Billy Collins poem Aristotle (the other two thirds—"the middle" and "the end"—seemed a bit too overwhelming for a nearly newlywed), I offered my insights. More or less, this is what I said:

:: Be appreciative. When Andrew and I took a pre-marriage class, one long-married couple urged the group, upon waking every morning, to gaze into our spouse's eyes and say, "I appreciate you." I thought they were goofballs. But it's one of the few things I remember from that class. Because as silly as it sounded, it's key. Overall, there is a 99% chance that you—as the wife—will end up doing most of the work in the home. And after a while, this can be frustrating. But when your husband helps out, thank him. It will mean a lot to him to be acknowledged. It will encourage him to do more. It will make him more appreciative of you. And, best of all, it will change you from feeling sorry for yourself to feeling grateful.

:: Be available. There are a million good things you can be doing outside of your home and your relationship. And a million things people will ask you to do. Don't be gone all the time. Don't be too busy. Don't always say yes. This is a constant struggle for me. I am a natural-born helper. But sometimes doing good comes at the expense of the people I love the most. Figure out when it's most important for you to be around and available. Evening is primarily the time when Andrew and I connect and regroup. If I'm gone too many nights in a row, it quickly becomes clear that I need to readjust my priorities.

:: Be affectionate. Early on, I didn't have any trouble with this. Holding hands, hugging, it all came so naturally. But, touch is not my love language, and as life became busier and more complicated, affection fell by the wayside. Chances are very good that your husband will respond positively to physical touch. Most men do. Grabbing a hand, rubbing a back, sneaking a hug, these gestures are instant relaxers and diffusers. Literally reaching out will bring you back to the moment and make you a nicer person when you're in a not-so-nice mood.

:: Be awed. Regularly celebrate the amazing things about your spouse—his musical or athletic talent, the way he fixes a sink or writes a limerick. Husbands love to be told how excellent and gifted they are. Cheer yours on. You are his number one fan. Never forget it.

:: Be atonement. Be sacrificial love. Be forgiving. Be Jesus to each other. Be at-one-ment, but be yourself. I love how Madeline L'Engle puts it in her book Two-Part Invention:

What I must learn is to love with all of me, giving all of me, and yet remain whole in myself. Any other kind of love is too demanding of the other; it takes, rather than gives. To love so completely that you lose yourself in another person is not good. You are giving a weight, not the sense of lightness and light that loving someone should give. To love wholly, generously, and yet retain the core that makes you you.

Remain the beautiful, unique woman you are, but be "at one" with your spouse, living in a constant state of grace and awesomeness together.

:: Be amusing and adventurous. This is easy. You are this. It is a natural part of the beginning. But in the middle and the end, not so much. Being fun and spontaneous is more difficult later. But it's when your relationship needs it most. Take risks. Do silly things. Start fun traditions. You don't believe it now, but there will be mundane and difficult times ahead. Find the joy. Let go. Play games. Explore together. Laugh. Let these things buoy your relationship and fill your memories.

Now that I'm writing this advice, it occurs to me that every point in my little reflection requires intention. In other words, none of these things just happen. Sure, at the beginning of a marriage, we may do them all with very little effort, floating on the excitement of new love. But in time, all good things demand hard work. As the pastor at this very wedding said so poignantly, we don't create oneness, but it's our job to nurture it and protect it and work so very hard to keep it.

Amid the embrace of family and friends and a loving God, a beaming Noel and Robyn transformed from single to hitched. And like every couple that's gone before, they have absolutely no idea what they will find when the doors lurch apart. What hard and beautiful things lie ahead. But like all of us, they can choose how to be. And that can make a world of difference.

{photo by Liam}

friday haiku

it's the beginning
of hard and beautiful things
no one can tell you

{photo by liam}

yes, mama would cry

Sometimes I worry that my four year old would throw himself over the banister if he had the opportunity. The sheer number of times that disaster is averted in a single day takes my breath away.

Although it would appear otherwise, my son is not a daredevil or a menace (as my husband fondly calls him). He is just coming to an understanding of danger, cause and effect and his place in space later than most.

Several months ago Elliott was diagnosed with a rare condition called cerebellar hypoplasia, which essentially means that he is missing part of his cerebellum. Tucked in back of our heads at the base of the skull, the cerebellum controls things likes motor function, spatial orientation, eye movements and much of our information processing.

Understanding concepts like the oven is hot so you don't want to touch it or cars drive fast so you don't want to dart into the street has not come easily for Elliott. He is not a cautious child. But he is learning.


For months we have worked with Elliott to understand that he must hold our hand when crossing the street because the cars could hurt him if he were to get hit.

"Cars hurt?" he asks me every time we cross.

"Yes," I tell him. "If a car hits you, it would hurt you."

Without fail he responds, "And mama would cry?"

"Yes," I say very seriously. "If you got hurt, mama would cry."

I am not sure when he started asking the followup question, but in the context of getting hurt, it always comes. And he always seems impressed by the fact that if anything bad happened to him, his mama would cry.


At the beach when I implore him to stay by my side in the water. At the marina when I insist on walking between him and the edge of the pier. At the farm when I pull him down from the fence as he tries to climb into the donkey pen. At home when I scold him for trying to scale the banister.

"And mama would cry?" he earnestly asks me when I explain a danger.

"Yes," I say. And he stops.

Several days ago Elliott underwent a sleep-deprived EEG. We kept him up very late and woke him up very early so he would be sufficiently tired to fall asleep naturally after having his head dotted with paste, attached to electrodes and wrapped in gauze.

In his short lifetime, Elliott has endured many tests. He's been poked and proded, scoped and scanned. But this test was different. It was awful. Elliott was terrified and although I could hold him and console him as the tech pressed the little metal disks onto his scalp, I felt helpless. I pinned his arms to his side and calmly told him he was going to be okay. The test wouldn't hurt. It would be over soon. And then I sang. I sang every song I knew. And, eventually, amazingly, my vulnerable little frightened son fell asleep. His mama cried.


I have thought about the EEG visit many times since. As much as I longed to wrap my arms around my son and tell him that I would never let anything bad happen to him, I couldn't do it. As much as wished I could tell him that he would never hurt, I knew it wouldn't be true. As much as I could have explained why this barbaric test was needed, I couldn't have made him understand. All I could do was comfort and console and tell him how very much I loved him. And when he was scared and his little heart hurt, I could cry.

Although I certainly don't claim to know the mind or ways of God, I have been struck with the idea that there is a connection here. Some believe God is all-powerful but wonder why he can't keep bad things from happening. Others believe that God simply has no interest in being involved; he is a distant superpower who lets his creation fend for itself. Still others believe God is active but arbitrary in his judgments and mercy. I am inclined to believe that God's nature toward us is like the pure love of a parent for its child.

Like a parent, God can't save us from all pain or make us understand how terrible, terrifying things might be for our own good. He can't promise us a trouble- and disaster-free life. And he can't take our place as we suffer even if he might long to. But he can comfort us and console us and wrap us in his great love. And when we hurt, he can cry. Now knowing how it feels to tenderly cradle a terrified child who trusts me so completely, I am quite sure there are many times, just like a mama, that he does.

friday haiku

handstands, waterslides
swimming together alone
unexpected joy

::

My related column in the TribLocal today.