My Lip Sync Debut at the 1994 Pumpkin Festival

     When I was in 7th grade, I participated in a Lip Sync competition for the first time.  My best friend at the time, and both of our younger brothers (who were also best friends) collaborated on a performance of Ace of Base's "The Sign," which was incredibly popular at the time (and is still a solid pop song, if you ask me).  We won 3rd place, and I was officially bitten by the "lip sync bug."  Please forgive the quality of the video-- sometimes something is trapped on a VHS tape and your mom records it from the TV with her camera.

Here's the link to the video.  I'm the short person dancing like a fool in a blonde wig...

https://www.youtube.com/watch?v=B3KshiLGurU

Cars 2

     Taking a child with CF to events which, at first glance, seem totally family friendly, does not always go as planned. My parents learned this when I was about eight years old on the night they took me to see the dirt track races in a town near my home. As we sat there watching cars whiz past, kicking up massive amounts of dust, my parents became worried about the environment they had brought me into. 

     The air quality was the second thing that made them question bringing me to the races that night. The first was the man in front of us, who had been swearing almost constantly since the moment we sat down.  Packed tightly in the stands, we didn't have many options but to stay put, and for a little while, my two brothers and I were exposed to a whole new vocabulary. As the noise of the cars drowned out the sailor-mouthed man, we settled in and enjoyed the roaring vehicles and sliding left turns. It wasn't until we got back to our car and were waiting in the jammed parking lot that my parents had a dual realization: they hadn't done my fourth "pounding" of the day, and I'd just been inhaling dusty air for several hours. They had never failed to do four percussion & postural drainage treatments on me per day, and they weren't about to let that change. We arrived home well after 11 pm, but they still did it, and fell asleep on one of their laps in the final downward slanting position. 

     A few years later, we had another situation where cars and CF clashed. My family went to the Kingston Burnouts, where a small town street is blocked off for one night and motor heads bring their tricked out vehicles to show off their aesthetic appeal and horsepower by spinning their tires and squealing down the road.  We arrived and found a small restaurant to have dinner at before the burnouts began, and our seat by the window let us see when the action started. 

     As soon as we stepped out of the restaurant to take a position to watch from the street, I could tell this was no place for me. After a few cars the air was already becoming saturated with the smell of rubber and the haze of exhaust. But we were trapped. Though we could see our vehicle down the street, it was on the other side and blocked off by barriers-- not to mention the cars flying past the excited onlookers.  We had initially turned to walk up the street to where the cars were starting their runs, but my mom and dad had us turn around to return to the restaurant. With a respite from the foul air, we decided to leave immediately and walk all the way down to beyond where the cars finished their runs so we could cross in a safe place. We walked back up the street to our station wagon and I felt a pang of guilt, being the sole reason why my parents and brothers couldn't stay and enjoy the evening's event. But nobody said a word to make me feel worse, and the "it's no big deal" mentality, the blip of me and my illness taking us off our normal path, was forgiven and forgotten without a word. 

     Situations like this were a hallmark of my childhood, which helped tremendously in making me feel like I was no different than anyone else in my family. It wasn't sad, or frustrating, or horrible that we didn't get to see the Kingston Burnouts, just as it wasn't sad, frustrating, or horrible that I was born with Cystic Fibrosis. It just "was," and life moved on-- as far as I was aware-- without turmoil, handwringing or fear. 

Graduation Season

Exactly 15 years ago today, I spoke in front of nearly 200 of my fellow graduates, along with their loved ones, as one of four valedictorians of the Caro High School Class of 2000.

Some context and general notes:

• The technology gap between when this was filmed and now limited my ability to get it onto YouTube.  I filmed it with my iPhone as it played on my TV, so I apologize for the quality.

The Best Laid Plans...

     My sense of smell has always been a little "jacked up."  Sometimes I can smell dinner cooking from across the house, other times it's on my plate and barely registers.  My wife will claim that our dog's blanket has a horrible stench, and I don't even notice-- but when she lights a scented candle, I can't handle it; its aroma is too powerful and I feel like it's suffocating me.  If this weren't an actual medical "thing," one would think I was just playing a long, unfunny prank.  But it has always been this way.  Throughout my entire childhood, the most common reason I needed antibiotics was sinusitis due to CF.  My pediatrician probably wrote that more times than he cares to remember.  My pulmonologist noticed that I had nose polyps around 7th grade and she sent me to an Ear, Nose, and Throat specialist to determine what, exactly, was going on up there.  After a few visits to this doctor to monitor the polyps, he told me that I could elect to have them removed.  The benefits would outweigh the risks, he assured me:  my olfactory sense would likely be improved, and I would have fewer sinus infections.  The only downsides were that I might end up with two black eyes from the surgery, and there was a chance that they wouldn't be able to get all of the polyps.  Those were the physical implications.  The emotional one was that I had never been in the hospital before, so the whole process was a bit scary to me.

CF Moms are Completely Fabulous

     If you didn't see enough Mother's Day appreciation on social media yesterday, here is a belated testimony to mothers, and, in particular, mothers of kids with Cystic Fibrosis.  I can't speak for all CF moms, or any of them, really, since I am not one.  I can, however, be grateful for the CF mom I have, and for how, through her guiding hand, I grew up into someone who was not limited or defined by a couple of mutated genes.

Dive In

     One day when I was probably ten or eleven, I saw a photo of me as a toddler.  In it, my shoulder and chest are wrapped up in gauze and medical tape.  I asked my mom what was going on in the picture.  She told me that one morning, when I was around three years old, I was with her in the kitchen.  She poured a cup of coffee, and stepped away from the counter for just a second.  That was enough time for me to reach up and conduct a very brief investigation into my mother's morning routine, which resulted in me pouring the hot cup o' joe all over myself.  I had first and second degree burns on my arm and chest, hence the mummy-like appearance in a few childhood photos.  I am sure this was a very painful and frightening event for little Evin, so I am grateful that a few years later, I had no idea it had ever happened.  Three weeks later, I was all better; neither my body nor mind was scarred by the incident.