I often share overly personal information about my family on Mostly Teachable, but neglect to share some of the honest to goodness details of my happy life here in the wilds of Southern Michigan. This year I plan to post my photo collection from each Week That Was. To kick off 2013, I thought I’d go back into my vault and share some of what turned out be a really nice 2012. Here are some of the pictures from the last 12 months:
My family and I returned from a week of vacation on Wednesday night. Now, I’m stressing returned because Thompsons are not a people accustomed to venturing very far from the fold. Vacation usually means that I’ve accumulated too many paid time off hours and am forced to futz around the house hitting various objects with a hammer followed by going out back to barbecue something or other (generally the hammer). This year we had the distinct joy of taking our daughter to Disney World for an actual vacation. I can say in all sincerity that it was one of the best trips we’ve ever gone on. A week on the go as we visited all of the parks, and created some great memories in the process. Darn! Those Disney people and their memory making jive. They were absolutely right. The parks and resort staff treated our little girl like a princess, all for the price of a ticket. As in any perfectly wonderful life situation, there is always the human element. We brought home one long dreaded souvenir in the process, it seems.
My daughter Anna, as I’ve mentioned in the past, carries the effects of Crouzon Syndrome, a cranio-facial disorder she was born with. One of the peculiarities of Crouzon’s is that the disease left her with hearing loss due Large Vestibular Aqueduct Syndrome. I read and read about LVAS and came away with two layman’s conclusions: She can’t hear much because of the disease and excessive jarring of the inner ear will reduce Anna’s hearing further. So, we’re careful. No soccer, or gymnastics. Definitely no roller coasters, which we avoided at Disney World. The spinning tea cups were pretty much the limit. On our fifth day, Anna complained about hearing loss to such a dramatic pitch that other tourists made that “control your kid” face. Not that we cared what they thought. Anna had given us yet another moment of pause in what has been a decade of pauses. We tested the hearing aid and it’s batteries and both were in order. The trouble was all in her left ear and it persisted into the next day. And the next. It has yet to be confirmed by Anna’s doctors at the University of Michigan, but our school district estimates that she’s lost 20 or more decibels. Gone, just like that.
To put Anna’s hearing into perspective, I’ve started to call her difficulty the “Sargent Pepper Syndrome.” Testing her hearing aids on my own ears gives me a glimpse into a world in which she hears what sounds like the opening of Sgt. Pepper’s Lonely Heart’s Club Band. The crowd sounds are up front, but when someone speaks directly to her it’s akin to Paul McCartney shouting “It was twenty years ago today…” from some faraway stage. She’s dealing with something we all knew was coming better than any of us. Anna is putting together picture books and having a few brag days at school. The question has always been with her hearing loss “What do we shelter her from?” In the course of being a normal kid, Anna got another dose of damage. She was spending time being a normal kid for once, and making memories. That’s the take away from the situation. She’ll remember Mom, Dad, and Mickey Mouse for the rest of her life and the times when we put our troubles aside and made some memories as a family.
Annabanana, my nine-year old daughter, was scheduled for a visit with a doctor she hadn’t been to yesterday and I got to take her. I phrase it as “got to” because taking her to appointments is always instructive. Anna is a professional patient. She was born with Crouzon Syndrome (spell check doesn’t recognize the name, but it rhymes with crouton), a congenital malformation of the skull and bones of the face. The nuts and bolts of the disorder is that her head and facial features don’t grow and have been surgically modified numerous times. Doctor’s offices are her norm and Anna acts with a mix of boredom and skepticism on visits. As I turned in her paperwork yesterday, I had to tell her from across the waiting room to stop slouching. While many of the patients in the room muddled through medical histories and questions while exhibiting nervousness and dread of the unknown, Anna sat halfway off of a couch, tuning out the whole ordeal.
Filling in Anna’s surgical history has become too lengthy for the space provided, and I verbally answer any questions that come up. Anna, on the other hand, gives the precise amount of information requested. Whereas I tend to blather on about history, the child knows when to stop talking. We’ve had long talks about dealing with the life you were born into and I know now that she’s taken them to heart. Maybe too much. She is too young to make major decisions about her health care, but Anna is in charge of the way she addresses life. It’s the great coming of age in which she is grappling with the idea that she’s used to the manifestations of her disease and wishes people would stop staring and get used to her as well. She started wearing her hair back this year, not worrying about hearing aids and scars. This is her reality, and everyone (especially Anna’s father) talk way too much about it.