Johnathan Bane finds unique and creative ways to help his daughter through an abnormality of her ear.
My daughter’s name is Mara Jade and yesterday was her 3rd birthday. For 3 years, I have been the father to this amazing little person. I look into that round little face with those chubby cheeks and laughing smile, and I just want to never let her go. I’m sure all fathers think their daughters are the most beautiful thing in this world, but when you factor in her sunny disposition and the pure love this kid puts out into the world, it’s hard to think of a term to describe this kid other than “beautiful”.
For example, we went to her favorite place to eat, a Chinese restaurant in Hermitage, PA called “Tops Buffet” and she literally hugged one of the waitresses. She is always so incredibly loving to this waitress in particular that we joke around about Mara being adopted, and this is why she’s so good at math. This kid is just a ball of sloppy love. She gives every person who crosses her path a big smile and says, “Hi! How are you?” She gets so many admirers during the course of the day, it’s almost baffling.
The more perceptive among you will see when she pushes her hair back, that her left ear is slightly misshapen. We call it her “lucky fin” after the Pixar film “Finding Nemo”. (If you haven’t seen this film, stop what you’re doing right now, get on Netflix and watch this damned movie. On top of keeping a kid busy for an hour and change, it’s a pretty cool movie.) It’s a condition called “microtia” and if affects approximately 1 out every 9,000 births in the US. It’s also usually connected with a condition called Atresia (the absence of an ear canal). Whether Mara has this or not, I don’t know yet. We have to get her to see a ENT specialist in Pittsburgh soon.
Mara is a very bright, energetic little girl who hit her terrible two’s just a bit late, having kicked it into high gear this last month right before her 3rd birthday. The moment I realized this was when I gave her a cup with decaf raspberry iced tea (her favorite drink) and she locked eyes with me, grabbed the cup with one hand and poured it out on the table with a look on her face that said, “Okay, now we’ve done this. Where do we go from here, Papa?” My dumbfounded face was proof enough to her that this was an error in judgment. So, like her father, she’s going to be defiant as hell. Okay, I’m sure my parents are now laughing at me.
Something else is happening along with her terrible threes at this point. Mara has a hard time communicating with us. She can understand us almost perfectly, but simply can’t get across to us what she needs or is thinking. As frustrating as it is for her mother and I (and it is, as anyone with this combination of issues can tell you), I can’t imagine how frustrating it is for her. I have always been able to communicate with no problems. My ability to use words and articulate to the degree I do is one of my defining abilities that separates me from most of my peers. I couldn’t imagine having that ability taken from me, or in her case, never having it in the first place. I simply can’t imagine a worse Hell.
Then a few months ago, I started getting chronic ear infections and literally had 60% – 70% hearing loss in my left ear (coincidentally, on the same side that my daughter has her microtic ear). I got rid of the first one fairly quickly with antibiotics. Then I got another one almost immediately. I’m sitting here with an ear infection as I write this. Just to try and emulate what she must be experiencing, I started walking around with a foam latex earplug in my left ear to completely block the sound, just to swim in her tank for a little while.
So, this is what she’s hearing, huh?
I hear a high-pitched ringing sound that never really goes away, but tends to be louder the quieter it is around me. Sounds that come from my left side tend to be muffled, almost as if I’m underwater. I don’t feel pain in that ear, but it feels like my ear needs to pop, but won’t. My words, breathing and eating sound unbelievably loud, drowning out about 30% of the sounds around me, be they loud or soft. Seriously, my mouth sounds remind me of listening to Rush Limbaugh speak. There is no vertigo or any kind of balance issue, but noticed that I tend to over-correct my motor skills slightly to the left, almost as if my mind is trying to compensate for the missing sensory input normally coming from my left ear. (When I have the earplug out, the motor correction is not present anymore.)
I also tend to process language longer than normal. I had a conversation with my wife last night while in this state and there would literally be a second or two delay to my reply because I was over-analyzing what she was saying to make sure I understood her.
Now, I’m sure Mara’s brain has adapted to the motor skill/language processing issue (if she ever had those issues at all), but the hearing symptoms are maddening because it prevents me from easily communicating with the world around me. I cannot imagine what she must be feeling, as a child without the ability to provide feedback much more than whining or crying. I’m sure the inability to communicate very simple things must be maddening to her. Maybe she knows she’s not saying things properly, or maybe she thinks she has stupid parents. In either case, the result is the same. Her mother and I are just as frustrated as she is.
So, the next step is the battery of hearing tests and doctor consultations that a condition like this requires. This is the part that scares me as a father, because one article I had read suggests that the issue can be corrected with four separate surgeries. Now, I consider myself lucky in that I’ve only had two surgeries in my life, both when I was very young and don’t remember them. I’ve had the good fortune to be pretty healthy. So, four surgeries seems a bit excessive to me, and this made me nervous. But, when I talked to a doctor at Pittsburgh Children’s Hospital a few years ago, he said it could be corrected, but it would take a minimum of twelve to fifteen surgeries. It was enough to scare us away…
I’ve been assured that once she finds her language “groove” she can (and most likely will) lead a normal and fulfilling life, even if she does not get her microtic ear corrected. In the meantime, I have to struggle daily to communicate with a understandably mercurial child, and she has to deal with a father with limited patience for things when frustration clouds his ability to understand his daughter’s confused perspective. These past few weeks have been an endurance trial, but oddly enough, it has only made me love my sweetpea more.
Photo courtesy of author