Tuesday, October 28, 2014

Dusty Gray: The Color of Death

Stoically she talked to him, quietly calling his name, one hand protecting his leg from crashing onto the wheelchair footrest, the other stabilizing his jerking head against the headrest.

Internally horrified, she watched as death passed over him, the shadow sneering as the seizure kept him from getting a breath, the little boy's skin turning dusty gray.

During the entire episode, she remained outwardly calm and looked as though she were just watching the clock tick. The preschool teacher who had run in a panic to get the school nurse remarked that she wished she could stay so calm.

The mom almost wishes she didn't look so calm. She realizes what her lack of immediate emotion must look like to others.

Does she even care?

Does she have a heart?

In private she allows her emotions to consume her and her heart to break - she cries, she pounds the pillow, she kicks the mattress, she begs God, she hides in her closet, she screams.

However, in public her mind often protects her heart (and surrounding onlookers) by employing a self defense mechanism that keeps her from expressing emotion and drawing too much attention to the situation. She will have an almost out of body experience where, from a distance, she watches events as if they are happening to someone else, and up close, she goes through the motions dealing with the issue like a puppet.

A puppet who saw dusty gray.

Wednesday, October 8, 2014

Reasons Not to Hope

"There he goes! He did it again! He's lifting his head off the floor!"

They were all exclaiming to each other with big grins, cheering and applauding their little boy with encouragement to do it again. 

They couldn't believe it. He could finally lift his head. They'd been waiting for this event for more than 3 1/2 years. They started making phone calls to let everyone know. Who knows what he might do next? 

She smiled to herself as she rolled over under the warm weight of the blankets until her eyes flickered open.

Disappointment set in again. It was just a dream. Another damn dream. She used to view these dreams as some kind of prophecy that one day her son would miraculously just lift his head off the floor, roll over on his knees, begin to crawl, pull to stand up, take steps to walk, or begin to talk using words she could understand. The dreams were so real. And friends, family, and even strangers had had them too. She used to feel hope whenever she would have one or hear of one.

But why? What was she really hoping for? A milestone? For what?

Unless a person hits most, if not all milestones, they will probably never function with complete independence. And even with all the faith she could muster, she knew going into the delivery room that his odds of hitting even some milestones where pretty slim, that he would be dependent on someone for his entire life, however short or long that would be.

Even so, she now spends hours taking him to therapies that are supposed to help him hit these milestones. But what's one milestone going to do for him in the midst of the many he won't hit? Will he suddenly be happier or more content? 

He's happy and content now. 

In fact, based on his constant coos and chirps, giggles and smiles, she doesn't know of a more happy and content person. The only time he gets upset is when one of his medical conditions flare up, and those have nothing to do with reaching or not reaching milestones. As soon as the medical issue is resolved, he is back to being his happy little self.

She almost feels like he didn't get touched by the original sin of eating from the tree of knowledge of good and evil. He seems unaware of the expectations and desires for success and independence that the rest of us think we want and struggle to attain. He seems content to be cared for, happy to be entertained or to entertain himself. And while he may appreciate toys or videos, he does not demand them. He seems content to be quiet and still with his own thoughts, drifting in and out of day dreamy naps, and just as content to be tickled, moved around, and spoken to almost as if he lives in his own little Garden of Eden. His soul seems at peace.

So whats wrong with that? What is she hoping for? And if she is hoping for something, does that not imply that she is discontent with the way things are right now? And why should she be discontent if her son is not? Isn't she just projecting her own fears of wondering how she is going to care for him if he does not hit milestones and is completely dependent forever, or of what others will think if she does not appear to be doing everything in her strength to help him?

He's just so beautiful. And happy. And loved. What more could she really hope for?