The other day someone sent me a link to an article about a study that found a possible link between autism and jaundice in newborns (and a link between autism and being born in the cold weather months, October-March).
As I was reading I was immediately thrown back to the hazy blur of Ethan's newborn days. He was born November 28 and came home on a frigid November 30. By the next day, I had noticed the yellow in his eyes and we brought him in to be checked. His numbers were just barely under the line to be readmitted to the hospital to go under the lights. Instead they wanted us to bring him the following day, a Sunday, to Saint Frances Hospital to have his levels checked again.
I remember being exhausted and disoriented. My parents took Anna and we headed back to the hospital where Ethan had been born four days earlier. Watching them prick his foot to take blood and listening to his blood curling screams was miserable, for all of us. Again, we learned, his levels were high but not quite high enough to be readmitted. We'd have to keep getting him checked, so the next day I bundled up two kids in an ice storm to go to the doctor's office. I was trying to hold a baby carrier in one hand and Anna in the other and we were all slipping everywhere. In my fatigued delirium I remember thinking, "Is this my life now? Where did my other life go?"
After that for a week I was supposed to undress Ethan and put him in front of the windows to catch the sunlight. The heat was cranked up as this tiny, yellowed thing sat in front of windows on unfortunately mostly cloudy December days. He was so, so sleepy. He was different than Anna. For awhile those first few months I thought it was due to the jaundice, which he did of course recover from. When I read the article I thought about it all again and realized well, maybe in an indirect way, his "different-ness" WAS due to the jaundice, if we're talking about it leading to autism.
Thinking about this began to lead me down a path I didn't want to go. I was changing my clothes to head out for the autism support group, remembering the stress of those first days and thinking all of the things that are pointless to think, the "If only" and "What if?, "Was there something I could have done differently?," and of course, the eternal "Why?"
In the midst of this Ethan came upstairs with a picture he had created with my help at his playgroup. His new thing is trying to show everyone his pictures. He doesn't quite get the complete concept, but the lightbulb is going off and it's so darned cute. He tends to like to show the same pictures over and over, only the ones he does at playgroup, but every time he gets smiles and praise from everyone. His face was lit up with a huge grin, and I just wanted to eat him up. Then he went downstairs, found another painting he did at playgroup, and brought it upstairs to show me. Everything I'd been thinking kind of slinked away. I love my boy so much.
In the car I turned on the radio to the Christian XM station and a song by Steven Curtis Chapman was on. He and his wife are no stranger to "why" questions. A few years ago his adopted daughter was accidentally run over and killed by his teenage son. I just read an incredible book by Chapman's wife Mary Beth about the experience.
The song, called "God is God," begins:
And the pain falls like a curtain
On the things I once called certain
And I have to say the words I fear the most
I just don't know
And the questions without answers
Come to paraylze the dancer
So I stand here on the stage afraid to move
Afraid to fall, oh, but fall I must
On this truth that my life has been formed by the dust
God is God and I am not
I can only see part of the picture He's painting
God is God and I am man
So I'll never understand it all
For only God is God
As I listened to the words, I could hear, I could feel the tension in them. The tugging of my soul, of all of our souls, when we face a choice to keep questioning, to continue to hold God accountable for perceived wrongs, or to let go and trust Him. There is something so troubling yet necessary about irresolution. "We live in the tension of creation," Jason Upton sings in one of his songs. We live between the now and the not yet. Sometimes we get a glimpse of what is to come in the form of miracles. Sometimes we wait with no clear answers. And that's where our souls strive because everything in our human nature MUST come up with an explanation.
Or maybe a better word would be, control. Saying we don't understand releases us from control, from explaining it all away with answers that in the end, are just as unsatisfying as the not knowing. Knowing is not everything. Just go back to the Garden of Eden.
"Where did my life go?" I thought blearily during Ethan's first days, feeling that tension of losing control, like many parents of newborns. The funny thing is, somewhere along the way we decide, "I've got this. I can handle this now." Unless life throws us a curveball and the way we wanted it all to go is disturbed.
When heartache strikes and we are faced with questions without answers, do we come to the place where we can say God is God and we are not? Do we acknolwedge that we cannot see the way He sees? Despite the answers and explanations our minds and souls crave, there is sweetness found on that difficult path. I am only now getting just a taste.
Thursday, October 28, 2010
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