I just don’t want to die a stupid death. “Did you hear about Jeremy?”

“No, what happened?”

“He was pumping gas and smoking a cigarette and accidentally mistook the car’s gas tank for an ashtray. He blew up.” Ouch

Which is pretty unlikely since I’ve never smoked. But a stupid way to die nonetheless.

Or

“Did you hear about Jeremy? He was driving in the mountains and watching Netflix. He accidentally drove off the side of a cliff because he wasn’t paying attention. He just so happened to be watching Thelma and Louise.“

All of my life I’ve vied for attention in most settings. I can talk over people in school. Try to upstage anyone in a play. Compete at an obnoxious level. Preach. I like the center of attention when I want it. It just so happens that I usually want it too much. It’s probably some need to be recognized and adored which I suppose many people want.

At the same time, I don’t like to be centered out for bad attention. I was in science class in 8th grade at a new school in Florida trying to make friends with my irresistible charm when my teacher said, “I don’t know how they act in Alabama, but we don’t act like idiots down here.” That’s not really the attention that I was looking for- I never spoke again in that class.

Over the last several years, Tiffanni has been hyper-aware of the attention that she draws. She hates when a kid sits beside us at Dairy Queen because kids stare. Like, bore a hole into your soul. And they usually choreograph what they’re thinking with their facial expressions. I’ve seen kids, eyes peeled back with raisin-furrowed foreheads, and I’ve seen kids with mouth snarls of disgust. I always try to distract Tiff. As clueless as she is sometimes, she catches all of the gawking glares.

I don’t say anything to the kids. I don’t even make faces back at them. I don’t know what it is about being different, but it draws attention. That’s why we all stare when we see someone handicapped, or a little person, someone with a deformity, a transvestite, even a couple with eight kids, or anything that is different. I saw Noah Galloway (the wounded veteran from Dancing with the Stars) at the movies yesterday and caught myself staring at his partially amputated arm. Dragging a stumbling, lumbering Tiffanni on my arm and staring at another “different” person- what an odd combo.

Two years ago I took Tiffanni and the girls to Melting Pot after our Christmas Village estrogen extravaganza. We had a great night with a lot of fun and talking, and on our way back to the car, I was escorting Tiffanni slowly, I heard Addyson scream, “Shut-up you stupid idiot!” as she raced by me and threw herself into the car. Just before I could fuss at her, “We don’t talk like that young lady,” I opened her door and said tenderly, “What’s wrong, what happened?”

“Those boys were making fun of mom. They were laughing at her saying that she was drunk.” I hate the wrong kind of attention for myself, but what I hate more than that is when my kids get the wrong kind of attention because of something they have no control over. Our world can be cruel and oblivious at the same time.

And that’s just it, how can a person be so conspicuous, receive so much attention and yet rarely be noticed? Not noticed in the unseen sense, because they get plenty of that, but not noticed. Not recognized for their personhood, their humanity. I get it, she’s different now, but fully alive, fully human. There’s a reason that the nursing homes have empty hallways.

Someone asked me several years ago what my greatest need was, “How can I help?”

I told them, “Just notice Tiffanni, make her feel like although things have changed, she’s seen.” And my people have done very well with that. She still gets shower invitations, lunch invites, and phonecalls.

Everyone wants to be noticed for their humanity, not for their uncontrollable differences. And Tiffanni is no different. Or maybe it’s me. Maybe it’s me that needs her to be noticed for her normalcy and overlooked despite her unique needs instead of the other way around. While I try to pretend like nothing has changed, it’s the gawking that I catch in my peripheral that snap me out of my unreality. There are a lot of stupid ways to die, but none worse than a death that no one realized ever happened.

 

 

 

* I know that many of you read this with a desire to be inspired and uplifted. Today just isn’t one of those days. Thank you for loving us in the easy days and the days that aren’t so much.

Every night that I can, the girls beg me to lay in bed with them and tell them stories. I’m retelling the same ones over and over and they won’t let me leave. “Just one more daddy, please.” Who can resist “Daddy”? One of my go-to’s is this monumental mistake of parenting that I like to think any of you could have made too.

Sunday afternoons are made for naps- especially Sunday afternoons in the middle of winter. Sunday clothes off, sliding into the cool sheets with a dozen blankets on top. Sleeping so hard and so long that the winter sun sets before you wake. But let’s be honest, I can nap in any season, in any temperature.

We had just moved into our brand-new house that Tiffanni and I built in 2007. My girls were 3 and 2 and it was one of those wintery afternoons. We all laid down and I was asleep in minutes. I’ve always been a light sleeper and I was startled out of my sleep when I heard the front door slam shut. “Surely that was just a dream.” I laid there debating, eyes refusing to open, “Could someone have just broken into my house?” And then it hit me, “The girls!”

I darted into their room and found empty beds. My heart pounding, I ran back to my room, threw on a pair of pants (why is it called a pair again?) and shot out the door. My guess is that every parent has felt that feeling. The one where you beg God to let everything be ok, “Just please let me find my girls.” And at the same time think, “I’m going to kill them.” I ran around the house, looked up and down the street, and heard a faint cackle. From my driveway, I saw them- playing on the next-door neighbors’ swing set. Wearing Disney princess dresses, and plastic fake high-heels, they were sliding and swinging and didn’t even realize that their hands and feet were numb from the cold. Their rosy cheeks would foreshadow the soon-to-be color of their behinds.

I’m a prisoner of the moment, my current mood affects my memory, but the way I remember it- I always wanted two girls first. Tiff and I only had girl names picked out those first two rounds. I never flinched at carrying pink dressed, pig-tailed, non-stop talkers in one arm and a blinged out Alicia Silverstone Clueless-themed diaper bag on the other. It was estrogen central there for a little while and I loved every minute of it.

Every night I go into the girls’ rooms and talk and pray with them. My prayer is some slight variation of, “Jesus, thank you for my beautiful princesses, give them a good night sleep and sweet dreams.” I want them to feel like a princess forever.

As a youth minister, a lot of event flyers and postcards come across my desk every week. A few weeks ago, I got a flyer for Winterjam- a concert with 10 different artists at the BJCC for only $10. For the first time ever in life, and I’ve taken teens on hundreds of outings over the last twenty years, I thought, “This would be perfect for my girls. I think I’ll plan a youth trip.”

I never imagined planning an entire event with teenagers just to watch the faces of my daughters light up as they rocked out to bands that I’ve never heard of. I remember my Petra, Carmen, and DC Talk concerts vividly, dressing up to fit the part, to join the mood. I envisioned the girls in their light make-up, hairsprayed locks, and pre-teen interpreted rocker looks. But not my girls. There’s no time for rock when there’s a ball to attend.

As fate would have it, I didn’t pay attention to the calendar and Winterjam landed on the same night as their Spring Formal. They had to make a decision- rock out with dad or doll up with their friends.

So, off they went one way and I the other. Dressed to the nines, sequined ball gowns, carted in a Toyota pumpkin to forget the world for a night and pretend that dances and boys and music and make-up were how us adults would live our lives if we could do whatever we wanted. Growing up too fast for too many reasons that I can’t control, it wasn’t so much of a dad rejection as it was a childhood rejection which seems to be all too obvious lately. My baby girls aren’t babies anymore and I hate it. Not completely hate it, but I would do the last 13 years all over again and again like Groundhog day if it was an option.

Every dad needs a girl to keep him soft. To keep him from thinking manhood is about toughness and mettle, authority and machismo. But having little girls isn’t about me at all, not about what it does or can do for me. It’s all about the gift I have been given to deeply love, support, and assist in shaping the beautiful and tender, strong-willed and defiant, life-rich and creative princesses that God gave me- pink worlds and all. I’m very pleased with the young ladies that they are becoming, but today I’m most pleased that when the clock strikes midnight, the dresses transformed back to t-shirts and pajama bottoms, and all of the pomp and glitter is gone, they climb in the bed with daddy and beg me to tell them another story.

I loved the movie Super 8 and the Netflix sensation Stranger Things. It wasn’t even the stories- they were rehashed sci-fi go-to’s with brilliant kid actors and a nostalgic setting. AMC has proven for years, get the characters right, have the best writers, and you can put a story in any setting. How about: teacher with cancer decides to make crystal meth to pay for his hospital bills? Or, an ad agency exec that gets paid to make everyone feel good about themselves, but never feels good about himself? Or, zombies take over the world? Get the story right, write well, and you can make anything work.

What I liked about Super 8 and Stranger Things was the nostalgia trip. A bunch of kids running around in the 80’s filming things. Now that brings back some memories. If I had to go back to the beginning of my life and pick an art that I would want to excel at, it would definitely be movie making. I get it, there’s nothing like a good book, but there’s nothing like a good movie either. I pick movies.

As a matter of fact, I had my stint. It was the 80’s and I played with a neighbor’s home video camcorder and wrote and directed a couple of short films myself. They were terrible. But they were so fun. The way that I remember it is that I spent an entire summer filming a Superman movie with my 8-year old brother as the lead. The special effects were nothing short of, well, turn the camera sideways and blow a fan in his face and he looks like he’s flying. Editing consisted of, get the take that you like and stop for the next scene. If you didn’t like that take, record over it. Who needs all of this newfangled equipment and CGI and and green screens and stuff?

My generation was the first to have our entire lives recorded on video. I had a friend try to show me his birth when we were in elementary school. His mom said no. While all of the cool kids were walking around with giant cassette tape player boomboxes on their shoulders, just before a break dance battle in our parachute pants and jelly bracelets, our parents had a giant video recording suitcase on their shoulder asking us to, “Do that again. I didn’t quite catch it.” We were the first generation to have to reenact the monumental moments of our childhood. It wasn’t long before television started offering a cash prize for our blundered moments caught on camera. More than once we tried to fake one.

These new kids are beyond spoiled. I get it, my grandparents thought we were spoiled because none of me or my friends died of polio or got trapped in a broken refrigerator before suffocating to death or got drafted. But these new kids think there’s always been a time that we video chatted on Facetime and texted. We’ve gone from dufflebag sized camcorders to full 4k quality video recording on our phones that fit into our pockets.

Tiffanni used to say, “Can’t you just pay attention and put that thing down.” It was sporadic, but I was faithful to home movies.

“You’ll thank me one day.”

We filmed our wedding, our honeymoon (some of it)- we rented a moped in the Bahamas and I filmed us riding for about 15 uneventful minutes just before I propped it on the double seat, pressed record, and we reenacted a Baywatch slo-mo scene in the middle of January. We filmed the kids’ births, birthday parties, Christmases, school musicals, baby dedications, water baptisms, college graduations, vacations- the memorable moments. And then I stopped filming.

It’s obvious to me now why I stopped. I just didn’t want to remember those moments anymore. While they were memorable, they weren’t remarkable. Or maybe they were, just not the way that I wanted them to be. We always catch our greatest moments on camera, delete the rest, and file all of the memories away in a cabinet of perfect pasts. I guess I deleted a lot more over the past few years.

Not long ago, I asked a friend of mine to loan me his Hi-8 camcorder so that I could go through some old movies to show the kids. That was last year. For some reason, it felt like time a few days ago, so I called all of the kids into our bedroom. Tiffanni laid on her side, eyes rolling back, falling asleep. And the kids and I gathered at the edge of the bed for the fun. “What is it dad? What are we watching?”

“I want to show you some old movies of your mom.” They froze their hyper, ADD, Red dye number 5 selves and stared motionless, eyes glued to the television. “This is Addyson’s baby shower before she was born.” Thirteen years ago. We were in the church foyer, filled with people that we loved. I kept making faces at the camera, Tiffanni chastising me in her Southern accent. I had forgotten her voice. And it jarred me.

“Look, there’s momma!”

“And there’s Aunt Stacey, Aunt Katye, and Aunt Candy!”

“There’s grammy and nana.” (Yes, just me and the ladies. Not even my own flesh and blood brothers could suffer through with me. Neanderthal sexists.)

“Listen,” I said. “What do you hear?”

“That’s momma’s voice.” Carsyn stared intently at the screen. “I love her voice.” It was lost on me until that moment, Carsyn was five years old when Tiff was diagnosed and she declined rapidly. The kids didn’t remember her voice.

“Do you remember mom’s voice?” I asked all three. They shook their heads.

We listened closely for over an hour. Laughing at and absorbed in dozens of scenes from our life. All of us captivated by the same thing. We didn’t care about the setting. The other characters faded into the background. With bedtime long past, we wanted to hear one thing, one voice say as many things as it would.

While I believe in the power of words- the ability to give life and take life. The responsibility to nurture and discipline, to shape and to challenge. It wasn’t the words that mattered this time. Say something, please say more things, just say anything. We each hung on every word and smiled each time that she spoke. I don’t remember one thing that she said and I’d be surprised if the kids did either. But we got what we wanted. Her voice. The kids love it. And I just miss it.

In every nightmare that I remember as a kid, either I or someone that I loved died. It was either a car accident, or drowning, or burning in a house fire, or a plane crash. And each one felt so real. I would awaken shaking, heart pounding, sometimes in tears. I would tighten my eyelids over and over until they hurt as if they could wipe memory away. After the first nightmares, I climbed in the bed with my parents. Shortly after that, I would go get them and they would lay in my bed until I fell asleep. As I got a little older, after a nightmare I would climb in the bed with my younger brother. Eventually I dealt with it on my own, I think.

As I’ve gotten older the few nightmares that I have still feel as real, but I can reason with myself immediately after I wake up. “That was a dream. Everything is okay.” I’ve heard that you can tell if something is a dream by looking down. If you can see your feet, it’s not a dream. But I never think to look down until I die. And then I might not have feet anyway, so I basically died because I got sawed in half.

I remember Addyson’s first nightmare. She was only two. What is it about fear that it can invade the most innocent of us? Tiffanni and I weren’t fearful people. We didn’t speak about death or loss or abandonment. We didn’t allow the kids to watch frightfest. One night, from her bedroom I heard a horrific scream. I bounced out of the bed to meet her halfway to my room. “What’s wrong?” She just cried into my shoulder. How would a two-year-old know how to discern a dream anyway? Dave Pelzer said, “Childhood should be carefree, playing in the sun; not living a nightmare in the darkness of the soul.” (From a book Addyson and Carsyn have read A Child Called It)

And that’s what nightmares are: the darkness of the soul embodied. Those things that we most fear- whether we are conscious of those fears or not. They come from a place inside that humans were never intended to have. We aren’t built for them. It’s like trying to sail across the ocean on a unicycle- it wasn’t built for that. Nightmares cause us to sink into the despair of that which misuses the imagination.

My family hasn’t slept well in a few months. Huntington’s has decided to invade the innocent. Sometime before Thanksgiving, Tiffanni woke up with a nightmare. “There is a swarm of bees in the corner of the bedroom. They’re going to sting us.” After an hour, I talked her down from her excitement and we went back to sleep. The next morning, I asked her if she remembered her dream. “That wasn’t a dream. There were bees in the room. Still are.” How could a child know how to discern a dream anyway?

Over the last several months I’ve stayed up through dozens of nights with Tiff trying to reason with her through all sorts of terrible scenarios. “There are ants in our bed.” “Someone is in the room with a knife to kill me.” “Your parents are singing Happy Birthday to me and I need to go get my birthday present.” “The kids are suffocating my grandmother.” “Someone is trying to kidnap the kids.” And dozens more. As if reality wasn’t hard enough, now she must deal with torturous thoughts from her imagination. Hell knows no limits.

Huntington’s is a trap. It tricks you in your body, manipulates your mind, deceives your emotions, and haunts your dreams. It raids every area of existence and then bombards those places outside of life. There is no sacred boundary. It answers to no one. It submits to nothing. Hell is its domain and it spreads its reach everywhere that it wants. Some days there are no bright spots, only spots. To pretend otherwise is to trivialize pain.

Nightmares exist. Especially when they leave the mish-mash of broken memories that encroach upon sleep and spring into life. I keep slowly blinking my eyelids and closing them as tightly as I can. Waiting for color to return. And to my horror, every time that I look down, I see my feet.

I am the biggest movie fan that I know. I have a couple of friends that I talk with about them a lot. It’s not because we don’t have anything better to talk about, I think it’s just because we love movies so much. One of my friends and I have a standing agreement to talk to each other on road trips where we’ve made up movie trivia games. I always lose, but not because I’ve seen less movies, because I have a lousy memory. For some reason, I can usually remember the lead actors, the director, and a lot of the time the writer. So, I lose because my friend suckered me into games that feature his strengths.

I have seen all the Best Picture winners since the 80’s and in 2003 I randomly decided to start watching all the Best Picture nominees to make my own pick. Last year I watched every picture from seven different categories and had my own award show in my head. Every picture that I wanted to win did at that show. And we didn’t have any middle-of-the-speech-mishaps.

I’m afraid that I’ve turned into a little bit of a movie snob. I know a lot of people that feel bad to say, “That movie wasn’t good.” Like saying that will hurt its feelings. But some movies are just bad. I’m looking at you Allied. You can’t build a plot around two people that are hopelessly in love and yet have no chemistry at all on the screen. I wanted to like you! You just didn’t like yourself. Through the years bad movies have gotten worse and good movies have gotten deep. I honestly think that we are in the best place for storytelling on the big and small screen that we’ve ever been in my lifetime.

I’m not completely sure what it is about movies that I love, but I do know that it’s an immersive experience. Which is easier at the theater. I forget about the day and submerge myself into a new world for a couple of hours. For an escapist, there probably isn’t a healthier way.

Tiffanni and I spend every Friday at the movies. We’ve seen about 50 movies at the theater over the past year. And I have to admit, as expensive as it is, movies were made to be seen in the theater. Years ago, I didn’t like going with her as much because there was so much pressure on me to get the movie right. We didn’t go as often and for every movie that I picked, she got the next pick. If we sat through a lousy movie that I chose, that was inevitably two lousy movies in a row. Unless you like Nicholas Sparks.

Every week I get to pretend. My imagination is incited, my emotions charged and I lock fully into an experience. I travel to fantasy worlds built by comic book masters, relive historical events through the lives of yesterday’s heroes, explore new planets, experiment with new technology, feel the tension of conflict at every level, cathartically delving into other people’s emotions. And all the while, sitting beside me is the very thing, situation, person that I am trying to escape. It’s a tough feeling to explain. Our life that we intended is the last thing that I want to leave, but this life that we ended up with is another thing. We stare at a giant screen filled with imaginary lives of adventure, while my reality sits in the peripheral just trying to stop shaking. The images bounce off her glazed over eyes as she sits emotionless, reflecting living lives.

“The biggest difference between real life and movies is that a movie script has to make sense, and life just doesn’t.” So, I reach for the tidy, avoiding the nonsensical, in order for life, if only for two hours a week, to feel ordinary. And the magic of movies offers the most appropriate way that I know to leave.

 

*  *  *  *  *  *  *  *  *  *  *

 

In case you care, here were my picks (apparently, I agree with the Academy a lot, mostly old white men…sigh):

Best Picture- La La Land
Best Actress- Emma Stone
Best Actor- Casey Affleck
Best Supporting Actress- Octavia Spencer
Best Supporting Actor- Mahershala Ali
Best Adapted Screenplay- Arrival
Best Original Screenplay- La La Land
Best Animated Film- Zootopia