"Those were hard things for me to come by, and I offer them to you for what they may be worth." - Toby Wolff



Tuesday, February 22, 2011

Your Burden Ain't Light





Ahhh. Broken Wing. Here we are again...

Every time I see you I say, "How ya doin?" You say "fine". Today I press, ask after Kevin. "He's a great kid...." you say. "I really like him", and I wonder at the term 'like', though I myself have used it of my own, as more than love. Love for your child is born. Like is a choice.

I ask you, of his diagnosis...have never really ventured there...the land of terminology. And you start from birth, the weak trachea, reversed heart valve, the colostomy bag since. "You see him naked, and his chest is like a road map!" you say. First twelve months on a ventilator, celebrating baby's first birthday with open heart surgery. You make me feel real petty in my complaints...and rightfully so. I watch you rub your truncated arm across a brow that has lost definition. This is the brow you wear....down...while the other shows your tenacity.

"So there isn't really a term for it then?" I ask. He shakes his head. "The ultimately unique Kevin Syndrome!" I say. He smiles. "Yeah", but his broken wing rubs the one that is right, and I consider that he thinks the whole thing his doing...that one misaligned chromosome might equate to "Kevin Syndrome".

He talks about how his son is the "million dollar kid." $900 in meds alone....every month. I look at the scars on his own hand, where the table saw got the better of him last year. Rallied he did. Surgery. Rehabilitation. ($900 a month, and my wife don't work.) Such pressure.

"He's 17, with the mind of a ten year old. He doesn't understand the way hormones are changing him. No one knows what it's like when he flips out." I want to understand, and wish I did know...how bad it gets at home.

"He punishes himself you know...in these fits. He will self exile to his room, until he can't stand it anymore. And I say, Kevin...you need to apologize for your words, actions....but it's like pulling teeth."

We talk about how powerful those words are, especially in a relationship: forgive me...I'm sorry... You look discomfited, say "I don't know if that will ever be a reality for him. A relationship. I pray for the day someone says, "Don't worry. I've got him".

Damn. I think my life is hard? At seventeen, his father doesn't think he will ever be able to live on his own 'cuz a ten spot is STILL worth WAY more than ten one dollar bills, no matter how many times they count it out together.

Every time I see you, I say "How ya doin?"

You say "fine".
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Thank you for listening.