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 firstname.lastname@example.org 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 email@example.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,
“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