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.
6 comments:
Dear Elliott,
You are a brave boy indeed! Miracles rarely come in this life. However, you and your special family are blessed because your mommy had connected you to a helping machine when you needed it the most. So very soon now, your friendly doctor can help your mommy and daddy know how to help you. In life, someday you'll find that often we grow the most when we have challenges. We thought you were too young to have challenges. But we know that you are such a special boy and God and your wonderful parents, Papa and Gigi and the rest of your family including us will give you just what you need to help you to make challenges, like lemons into lemonade. God is with you, Elliott. He really is. And don't forget your great aunt Sharon and uncle Ken love you will be praying for you and your mommy and daddy.
Praying for this precious little boy.
Amy - this is powerful, and rich, and painful, and compelling... and full of the very things of life. We love you...in fact, we treasure you...and your words touch our very soul and they escort us to the throne of grace and mercy and hope...where we encounter Jesus; who knows and loves and cares and embraces, you, and Elliott, and Andrew, and Liam. No monitor could every capture the depth of God's love for this little boy...but a Mom sure can. We are blessed to share your journey.
This is beautifully written Amy, I'm just about crying. I hope that your happy boy and his wonderful parents get the answers you're looking for. Stay brave, both of you.
Thanks for sharing this journey with us, Amy. You're an encouragement, and you're in our prayers.
Thank you Amy for your gift of storytelling--opening up a world of promise and hope to all of us. I feel privileged to be a part of Elliot's dance of "go this way." He is a very wise teacher indeed--looking for the joy in simple things--things we can touch and have right this moment.
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