Wednesday, August 18, 2010

In Which Many Things Were Resolved

On the morning of August 2, I stood on the beach in Santa Monica and thought about the whole of our family's journey. As I sought to steady my soul against the realization that Ethan was at that very moment anesthetized and probably cut open, I became acutely aware of my surroundings: The cool of the fog and how it didn't seem right that it had no odor. The silence of the surfers, patiently making the most of the rising tide. The abandoned remains of what appeared to be yesterday's ambitious sand castle project. The joggers, tai chi dancers, beach combers -- all busying themselves, seemingly oblivious to anything other than occupying that particular space at that particular time. As I tried to appreciate my role in this landscape, I had a kind of The Matrix moment.
I had thought it might be a cool idea to write the words "Ethan's Ear" in the sand, then take a picture of it with my phone and use that image to accompany my last post to this blog -- kind of like a postcard from the end of the road thing. You know, the Santa Monica Pier is the end of Route 66, end of our story. It seemed conveniently tandem, if not dead-bang synergistic.
As I started to make the "r" in "Ear" a big ass wave came and erased "Ethan" as well as the top half of "Ea." And just like that, I saw life in all its gloriously fractal, metaphoric beauty. I knew in that split second that this entire story will one day be forgotten -- or, more accurately, rendered meaningless. Life itself is temporal, ergo stories about life must be exponentially more so.
I understood that the wave that had just erased my words began from farther out than I could see, and that that final, tiny punctuation mark of expression at the end of its long journey was the only announcement that the wave had been there at all. Only as it neared the land would it show itself in a form where the surfers could ride its break; where it could lick ever so slightly farther up on the shore than its predecessor to smooth the disruption in the sand I had caused. And how much like that wave was my story? How far back had it begun and how long had it been building until it became anything of consequence? And how many other stories, like other waves, rise and fall without a witness? It became a privilege. Life, no matter its quality, is a privilege.

•••

I know how lucky we are. While it has to some degree defined our lives for the past 6 years, Ethan's birth defect is a pretty minor thing. So he was born without an ear. So what? It's not like he couldn't hear at all or function in society. It's not like he needed machines to keep him alive or had been sentenced to some long, slow, agonizing decline toward a painful, early death. No, he was pretty normal. Happy even. And if he was picked on or singled out because of his ear, is that really much worse than a kid who's overweight? Has freckles? Suffers from a speech impediment?
I know how lucky we are not only because Ethan's birth defect was a relatively small ordeal, but because among families who face identical circumstances, we netted better results than most. Ethan now hears and has an ear. The percentage of parents who go through what we've gone through and can say the same is pretty fucking small.
I know how lucky we are not only because we ended up counted in the "lucky few" column for our results, but because Ethan is so much more than the sum of his parts, and I believe he understands this to a greater degree than I'm willing to believe a 6-year-old could.
I know how lucky we are because for every single second of the past seven and a half years of my life I have envisioned the absolute worst scenarios and have had to consider all possible preventions and/or solutions that might be needed for every situation ever. Not because our son was born with a birth defect, but because we have children at all. We are parents. We do this. It's part of the job description and one happy byproduct of this is that we all understand and help each other whenever we can. Because we all know that on a good day it's not easy. In fact, it's the hardest fucking thing most of us will ever do.

•••

To those parents who tried what we tried and didn't get the results you'd hoped for, I'm sorry. Up to the very point in time when you knew, our paths were identical. And for my mind's version of what could have been, I appreciate what your lives are like.
To those parents who didn't have the means to try what we tried, I'm sorry. We are not rich -- not by a long shot, and much less so after this all. Still, among the financial rats nest that is our life, we are lucky to have great health insurance. And I vow to you that if I ever hit PowerBall, I will pay for each and every one of your kids to get the same amazing treatment that Ethan received. Right after I buy my BMW 6-Series convertible, that is.
To those parents whose children's diagnoses were not as severe as Ethan's, you are heroes to your children. Allow yourselves the luxury of reveling in the title because you fully deserve it.
To those parents whose children's diagnoses were more severe than Ethan's, you are heroes to your children. Allow yourselves the luxury of reveling in the title because you fully deserve it.
To those parents whose children were born without incident, your coming along for this ride has been such a stabilizing force. I can't thank you enough for your support.
To those who don't have kids but followed along anyway, fuck you. Kidding. I am awed and humbled that you found these meager expressions worthy of your time.
Thank you for all who have shared with me in comments, in private e-mails, on the phone, in person. I count myself lucky for knowing you and I'm truly grateful for everything. EVERYthing.

•••

So, save for the odd random update, the story of Ethan's ear is over. I thought about it long and hard and I don't believe it would be right to continue contributing to this blog outside of those random updates. I already feel like I've detracted from the thrust of it with my insatiable desire to be thought witty.
I started this blog with the intent of telling Ethan's story and along the way I've fallen in love with writing. So I've decided to start another blog soon -- maybe something with a mild "daddy" focus and lots of cuss words. As if the two could be separated. I have a lot of details to hammer out, but if you're interested in knowing where and when it will be, please reach out to me at edkiggins@hotmail.com and I'll send you the URL when I have it figured out. I promise to use paragraph returns this time and immerse myself more thoroughly in the blogger milieu.
A lot of folks have suggested I write a book about this whole experience. I may or may not do that, but I do plan on gathering these posts together and having a book made from them. If, for any sick reason, you believe you'd like a copy, e-mail me at edkiggins@hotmail.com and we'll work something out. I don't plan on marking up the cost of producing them, but will happily have Ethan autograph copies for you. Plus I'm pretty sure I can get him to come to your house and do a few errands.

Lastly, as pertains to this blog, Ethan's Ear, I do have one more thing to say -- one more entry that's well past due. I'm going to get to work on it now and I'll post it when it's done. I hope you like it, but it's really not for you. If this is where you get off, thank you for riding. Much, much love,
Ed

“Oh soul, you worry too much.
You have seen your own strength.
You have seen your own beauty.
You have seen your golden wings.
Of anything less, why do you worry?
You are in truth the soul, of the soul, of the soul.” -- Jalal ad-Din Rumi




Thursday, August 12, 2010

Roll Another Number For The Road

3. The number of times someone in my family has peed the bed during our trip so far.
0. The number of times I have peed the bed during our trip so far.
1. The number of times someone has vomited in our rental car -- in this case within 50 feet of the entrance to the Freeway on which we were to spend roughly 35 miles.
9,717. The number of times I've fought back the urge to yell something like, "Hey, Dumbass family, do you NEED to have your family fucking reunion in the middle of the fucking road?" to people walking around in Disneyland.
9,718. The number of times the opportunity to utter those words has presented itself.
-1. Number of Dumbass Families who love me now compared to when we got here. Oh well.
3. The number of hotels we've stayed at since we've been in California.
0 for 3. Our travel agent's success record in finding us hotels with all three meager "must have" amenities we requested (pool, internet, gym).
0. Number of times I will ever use that travel agent again.
7. Estimated number of pounds I've gained back so far as a result of not being able to get my heart rate up regularly because shitty travel agent managed to find the only hotels in California without fitness facilities.
29. The number of over-priced meals I've eaten. Insult to injury.
0. The number of times I've had good sushi in California. Seriously.
15. The number of times I've felt dread about not being able to work out.
694. The number of times I've felt dread about having to go back to work -- especially since with the three-hour time difference, when we get home I'll have about an hour to sleep before I have to wake up to get ready for work.
3. The number of quality hours I've spent sleeping.
59. The number of times I've missed my bed at home.
59. The number of times on average per night one of the kids kicks me hard enough to wake me up.
59. The number of times on average per night I've returned to sleep and dreamed about being childless.
2. The number of cocktails Sandi and I have managed to enjoy between us on this trip -- me, a glass of wine with dinner, Sandi some ├╝ber gay-looking rum punch thing at Rainforest Cafe.
3. The number of times that, because of my extremely limited exposure to televised news, I've actually seen anything about what's going on in the world.
58. The number of times that, despite my extremely limited exposure to televised news, I've heard about the flight attendant who quit Jet Blue.
2. The number of cups of decent coffee I've had on this trip.
45. The number of times since his surgery I've been certain that Ethan jostled his head sufficiently to knock his new ear off.
0. The number of times since his surgery Ethan actually jostled his head sufficiently to knock his new ear off, or even hinder his healing at all. He is "pink and wonderful," as Dr. Lewin says ... and, she assures me that's a really good way to be even though it sounds kinda odd.
7. The number of meltdowns the collective "we" has had so far.
37. The number of giftshops we've "browsed" during this trip to appease or stave off meltdowns.
93.7%. The percentage of people in Disneyland who need better mirrors in the stores where they buy their clothes.
19,056. The number of times I've been close-to-tears-happy that this ride is almost over.
0. The number of regrets about any of it. Because ...
8. The number of ears we're coming home with.

•••

For those of us keeping score, so far we've gone to: Long Beach, Manhattan Beach, Griffith Observatory, Griffith Park, Sunset Strip, Hollywood Blvd., LaBrea Tar Pits, Pace Museum, Beverly Center, the movies to see Despicable Me (really good), Sea World, Legoland, Santa Monica Beach, Santa Monica Pier, San Diego Zoo, California State Aquarium, Disneyland, Downtown Disney, Disney's California Adventure, the pool, the hot tub. We still have three days left.

Help me.

"One is the loneliest number that you'll ever do." -- Three Dog Night



Thursday, August 5, 2010

She's A Beauty

The tubes-a, they're-a gone-a. From what we'd heard, this was to be the one part of the process that might really hurt. He might cry, flail, squirm, kick me in the nads and yell "why did you do this to me?"-- just like his mom did on the way to delivery.
Know what? He didn't even flinch. It was like taking off a sock. And we felt like asses for being so nervous about the whole thing.
So that's the good news. The bad news is that little man had been getting a bit ... aromatic, especially around the headular area. No worries, we visited Dr. Lewin's office this afternoon and got the sponge removed from behind his left ear (skin graft area number 2). We also got the dressings changed and he got his hair washed for the first time since surgery day. Seriously, his hair is usually really silky and fine. Even when he's been sweating he smells wonderful. But apparently they put some kind of goop into his hair during surgery and between that and the skull cap, his hair looked like the fur of a long-lost runaway Irish Setter. Matted and about 3 shades darker than normal. Like you wouldn't be surprised to find popsicle sticks in there if you dared poke around.
Anyway, while Dr. Lewin had him there, exposed for the warshin' an all, we got to view the new ear up close and personal-like for the first time. Holy fucking shit. It's truly magnificent. Yeah, we all know I'm a big fat woman, so my reaction should come as no surprise. But the biggest lift of the whole trip came when Eth saw his own new ear in the mirror for the first time. The photo above is a kind of after shock of that first smile, which grew slowly but steadily, kinda like the Grinch's. This photo is within moments of the first time we all looked at Ethan head on and, for the first time ever, saw two ears smiling back at us.
His left ear is still a bit swollen, since Dr. Lewin needed to take skin from behind it to complete the skin graft. Plus, his cheek just before his new ear is swollen, so the symmetry isn't where it ultimately will be, but fuck sake, LOOK AT THAT! I don't care who you are, that's god damn amazing right there.
Know what? That makes me realize that I should probably talk a bit about Dr. Lewin here. Again, I don't think I watch much TV at all, but apparently what I do watch is all wrong. Because if you described a person as "one of the world's prominent plastic surgeons, practicing in Beverly Hills ..." the last image that would come to mind is Dr. Lewin. She is a wonderfully real person. Or, as Sandi would describe her, a mother. You know what she's like? She's like if you had this really good friend who did nothing but listen to you talk about your own problems and was always amazingly supportive and helped you at every turn, so you always knew they were nice. But then one day they showed up on Jeopardy! and won a bazillion dollars and you learned that they were, like, WICKED smart, too. And the more you got to know them, the more you realized that there's not only this tremendous depth there, but also a peace/confidence that keeps them from rubbing their superiority in your feeble face. Ethan adores her. Probably because she tells him how beautiful his blue eyes are. He's such a pushover.

By the way, I apologize if these recent posts lack the usual panache. We are, the four of us, living in a tiny, crappy hotel room together and I have not been able to hear a single thought of my own for a solid week now. It's like having a flock of wild parrots duct taped to your head. Tomorrow we are leaving for a few days in San Diego where, supposedly, our hotel room is right on the beach. I don't expect the audibility of my own thoughts to increase, but I can certainly imagine the surf drowning out some of the background noise. Oh, that I could detach my own ears some days.

"It's called Sex Panther by Odeon. It's illegal in nine countries... Yep, it's made with bits of real panther, so you know it's good." -- Brian Fantana