Wednesday, August 5, 2009

Gang Aft Agley

Confession time. The last word we received from Dr. Brad where he suggested that Ethan's ear canal couldn't/shouldn't be repaired was pretty damn deflating. As the parent of a child with a birth defect, you try to take shit in stride and keep a brave face. You're SUPPOSED to be that parent, that Zen Master. The world expects it of you because it's much easier for them to tell you how well you're handling it all than it is for them to tolerate your tantrums -- even though they defend your right to throw one.
And believe me, we're fully aware of how small Ethan's problems are when compared to those of others. We volunteer regularly at our local Ronald McDonald House and witness firsthand just how unfair life can be. It never ceases to amaze me just how much damage kids can endure without complaining and I commend their bravery even though I defend their right to throw tantrums. So we know. We get it. We're much luckier than some, much less lucky than others.
That being said and as selfish as we may appear, we were more than mildly flattened by Dr. Brad's evaluation, not that we blamed him in any way. It wasn't an immediate, forceful flattening so much as a slow leak -- hope gradually escaping. The story of how Ethan's ear canal could never be restored had been written, folded and placed in the envelope and all that was missing was the stamp.
Then last Friday I got an e-mail from Ronnie Bean with a letter from Dr. Brad attached (me to myself: 'Here comes the stamp, kids'). I was on the phone with Sandi when the e-mail came through and I read Dr. Brad's letter aloud to her. 'Dear Mr. Kiggins, Thank you for sending me Ethan's updated CT scan' ... 'Malleus and incus fused' ... 'Stapes rudimentary' ... 'long arm of incus possibly attached to stapes' ... 'graded Ethan a 6 out of 10' ...

"I certainly think we could open the ear canal, and if we were not able to get a good hearing result, Ethan could wear a conventional hearing aid in his new ear canal if he chooses."

Did he just say he thinks he can operate? Sandi and I co-babbled a rough, limbic response complete with our own color commentary: "I thought ... facial nerve risk ... couldn't operate ... am I understanding this right?" Imagine a lot of pauses and grunts and you get the idea. I re-read it to her, then forwarded her a copy and we read it together just to make sure we weren't getting it wrong.
And just like that the entire landscape changed. We went from no hope and reevaluating every plan we'd made to a really positive worst-case scenario. And I felt the shell I'd built around my vulnerability crack and fall away, as though it were permissible to actually feel something again and not just operate out of a sense of duty. I actually had to leave the office because I was crying and needed an excuse to put on sunglasses and be away from people. I headed to my truck and sat there for (I guess about) 15 minutes, windows up in 95+ degree heat because I was too stunned to start the engine. I was only shaken to reality by sweat stinging my eyes. I drove home.

I reached out to Ronnie Bean to thank him for the note and to ask when would be a good time to speak with Dr. Brad. He told me that Dr. Brad was leaving on vacation and would be back Tuesday (yesterday). No call last night, but I'm not disappointed. In fact, for the past few days I've been amazed at just how much lighter everything feels. Giddy even. And even if it turns out that we read Dr. Brad's letter entirely wrong and there's no hope for Ethan's hearing, I'm thankful for the peace the past few days have brought.
So I apologize for how unfunny this post was. Next time, I promise. Maybe a vlog of Ethan doing interpretive dance. He's really quite good.

"Wee, sleeket, cowran, tim'rous beastie, O, what panic's in thy breastie!"
-- Robert Burns

1 comment:

  1. I am glad to hear that there is a good possibility of having Ethan's canal opened. I am sure the peace has felt great. It is amazing what kids go through and keep on truck'n.

    It's too bad each kid does not come with their own owner's manual!


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