“Are you really sure about this?” I asked Nugget one last time as we spun through the hospital’s revolving door for the third time. (Revolving doors never get old in our family.)
“Yeth. I am thure. I’m ready Mom.” The idea of letting a six-year-old make his own medical decisions seemed nuts but in the end, it’s his body. After spending the summer jumping through more hoops than a participant in the Westminster Dog Show, Nugget will be heading into surgery tomorrow to get an abutment implanted in his skull that will eventually hold his hearing aid and while he can’t wait, I’m ‘bout to lose my damn mind.
Six years ago this chunky Nugget came roaring in and while he was as big as a small toddler, weighing in only an ounce shy of 10 pounds, he had more issues to contend with than his thunder thighs. He had a kidney that didn’t quite work taking up his entire abdomen. He had a divot in his throat that we hoped had closed better on the inside than it had on the out and as a cherry on the top, he had one ear. The other spot was filled in with a tiny nub that kind of resembled a mini-ear but with no opening or inner workings. After failing the newborn hearing test and a few kidney scans we spent his first couple years splitting our time between children’s hospitals and doctors until we finally got the diagnosis that put it all together – Branchio-oto-renal syndrome. Branchio-the divot in his throat, oto- that missing ear and renal, the hot mess kidney. With an official answer, we were on our way to getting a handle on things.
The first three years of his life were filled with procedures, surgeries, early interventionists, audiologists and a mother that played detective better than Cagney and Lacey combined. Eventually we hit a good groove and things became manageable. A speech impediment and anxiety issues are far easier to deal with than internal organ issues but there was still one surgery left and that one is happening tomorrow.
Because he doesn’t have an ear, there is no place to put the hearing aid and no tube to send the sound through so he wears a BAHA (Bone Anchored Hearing Aid). He’s worn it on a headband up until now that holds the aid close to his bone and transmits soundwaves through his skull. But being the one-eared guy wearing a Bjorn Borg head-band all day as well as a transmitter around his neck connected to one around the teacher’s neck has taken a toll on his self-esteem. (And I thought being the chubby kid was rough!)
Last year a little asshead from a neighboring class did mock him but the perpetrator was quickly reported by the class narc and received a harsh punishment. I asked Nugget if he was upset about the incident, “Nah. It didn’t bother me because I didn’t hear him.” Note to the asshat, if you’re going to mock the one-eared guy, you’ll need to do it on the side he actually has an ear or your efforts are fruitless. This is a prime example of how Nugget handles all this. In his six years he’s gained more self-acceptance than most adults. Last week he came home from school with a self-portrait complete with one ear, “Dats who I am Mom. I’m just keepin’ it real.” It worked for Van Gough, so why not Nugget?
Six is the magical age when a kid can break free of the headband and get an abutment implanted so the hearing aid just snaps on, streamlining the process and turning him into “a man” as Nugget explained. “When I get my BAHA implant, I’m going to be big, like a man. No more little kid.” He has been counting down to this manhood for years. This summer we got the approval and now it’s time. It’s all great for him but the thought of wheeling my baby into surgery one more time gives me more anxiety than the current political climate. And if I’m bad, my husband The Turk, AKA Captain Anxiety, is about to blow.
“Baba is thrething me out Mom.” Nugget confided in me last night in bed.
“Right??!? He stresses me out too!” I confirmed.
“Can we leave him home?”
“Sorry Nugs but no. We can send him for coffee a lot though and if we take him he can drive and we can snuggle in the backseat.”
“Thounds good to me Mom.”
So send some good vibes our way for tomorrow, Nugget becomes a man, or at least his ear does and while that happens I’ll be twitching and pacing and The Turk will be getting coffee….again…and again.