There are a lot of big things to be thankful for. My parents, my family, my church, my friendships. And I’m sure that I overlook them and take them for granted sometimes- not as often as I would have thought. If this disease does anything, it slows me down and helps me to reflect. But every once in a while, a thought will hit, and I’ll think, “I sure am lucky for that.”

I was late to puberty (by today’s standards). A girl once asked me in 7th grade why I didn’t have any hair on my legs. On the spot, “I shave them. I’m a knife collector and that’s how you tell if your knife is sharp.” Brilliant. I’ve had better days. Tiffanni lost motor skills before we had time to plan. About a year into helping her do everything it occurred to me, I haven’t shaved her legs. I panicked and began to think through all of my options- shaving, waxing, sharpening my non-existent knife collection, laser (is that a thing?), removing her legs altogether. And then I looked- she has no leg hair. Like none. Whether it was the disease, the medicine, or genetics, I hit the jackpot.Lucky her, she gets to keep her legs. It’s the little things.

She and I go to Dairy Queen and a movie every Friday. We’ll see about 45 movies this year. A lot of them are good, some of them not so much (I’m looking at you Divergent: Allegiant), all of them an escape. But something that never fails- Dairy Queen. If you’ll just lower your expectations a little, the burger and fries and a blizzard are spot on. I had a kidney stone last year and gave up soft drinks, but on Fridays- I splurge. Root Beer is my guilty pleasure. But when it’s time to go, I have to figure out a way to leave with two drinks and Tiffanni. That’s a three handed problem. She gets one hand and lucky for me, my other hand is the perfect size to hold two drinks. Whether it’s big hands or small cups, it works. Tiff in the right and Dairy Queen in the left. There’s not a Friday that goes by that I don’t think about that perfect combination. It’s the little things.

I was never a curser, but if there’s anything in the universe that is damned by God, it’s disease. To listen in on a cathartic explosion of shared frustration once in a while opens a relief valve, if only for a moment. I’m grateful for friends who grieve with me. They bargain, and cry, and deal, and curse the things that are cursed in my life. One of my closest friends fills in the gaps when I can’t. Where I don’t have the space for anger or to feel for that matter- he let’s somebody have it. I’m not exactly sure who Somebody is, but that person would be so offended if they heard him. So that no one ever gets too vaunted of an image of me- I like when someone curses for me and more importantly, for Tiffanni, out of a desperation for justice. Tiffanni is proof that bad things happen to good people. And sometimes safe words don’t express this violation. It’s the little things.

Over and over I’ve noticed the serendipity of the timing of this disease. If it was going to happen- there are some things that make it better now. The big things are my parents in a place where they could uproot their lives and build a house with me. And my church that affords me the pleasure of doing what I love and the space to take care of the ones that I love. The other day, Tiffanni and I were at the movie theater and I’ve noticed the last few times she’s struggled to go to the bathroom by herself. She usually takes about 15 minutes- just long enough for me to start evaluating women to see who I could ask to check on her. But she always stumbles out. So a few movies ago, I went to the General Manager and told him our situation. He said that he sees us every Friday. I asked him, “If there is anyway possible that remodeling is on the agenda in the future, would you consider a family bathroom?” He skirted the request with the legalities, and bringing everything up to code, and such. But then said to me, “You know what, take her in there with you. I don’t mind and no one around here will mind. Lastly, because of the last few months, no one can really say anything anyway.” And with that, we resurrected movies. They’re ours for as long as we want them and nothing really stops us. So, the angry people can have their boycotts and feigned outrage. I’m going to take Tiffanni to the bathroom. Without it, we lose movies, and movies are important. And in this case, timing is important. It’s the little things.

It’s not all bad. And I’m not just spinning this thing. Because there are so many parts of our life that are tragic. But there are bright spots, suspiciously providential spots, that float around our lives everyday waiting to be noticed. And enough little things make this big thing a little more bearable.

I sat around a craft table filled with my other 7 year old classmates. I vividly remember sitting around that crayon crusted table with Krista and Kenneth- mostly because Kenneth and I were vying for Krista’s affection. “I don’t believe in Santa Clause, do you?” Krista announced with an arrogant authority. If my mom and I wouldn’t have already had that talk, I would have never admitted it. It’s funny what you remember after more than 30 years. I was seven.

A couple of nights ago we sat around the dinner table. Brayden, without provocation asked, “Dad, tell me if you’re Santa Clause.” I’ve gotten pretty good over almost 20 years of youth ministry in not reacting to what people declare- you hear a lot. You can shut a teenager down in seconds with a furrowed brow.

“Where did this come from?” I deflected.

“Dad, are you Santa Clause? And I need to know about the Easter Bunny too.” My face had to alter. This is my last believer. My last dreamer.

“Buddy, don’t you want there to be a Santa Clause? I sure do?”

“I want the truth,” he demanded, his eager eyes boring a hole into my soul. My little Tom Cruise.

I fired back, “You can’t handle the truth! You don’t want the truth because deep down in places you don’t talk about at parties, you want me on that wall, you need me on that wall.” Ok, I didn’t say that, but have I written about how much I love Aaron Sorkin?

“Buddy, I want there to be a Santa Clause. You don’t want it to be me, do you?” I said as I grasped for another ever-fraying strand to a former life. And with that, we moved on.

Later that night, upstairs in his room/guest room/play room/music room/where I hide to nap (third kid, tough luck) room, we sat on the couch playing guitar together. He’s learned seven chords in seven days and somewhere between D and A minor he stopped. “Is mom gonna die?” He stared at me with the same truth needy eyes. And he grew up. Just like that. You always hear how kids grow up in a flash, right before your eyes. But this lightning struck too precisely, too directly.

The girls have asked the same question and I’ve never had a good answer. Years to prepare, seconds to avoid. “I mean, we’re all going to die.” “No, of course not.” “Well, it’s complicated.” “You know, we’re going to keep praying and keep loving her no matter what.” “Look at me, I’m going to take care of your mom- don’t worry about her or me.” “They’re doing amazing Huntington’s research right now. I bet we’ll have a cure before long.”

So, I rifled through my bag of responses, situated somewhere between frets and strings, naiveté and candor, and shot something back to divert. Not because he doesn’t deserve an answer. And not even because he’s not ready for something. But because I’m not. And I taught him another chord. Anything to keep Santa alive.

Monday was our fifth anniversary. We’ve gone to the same place every year- same routine, same time, same smells, same faces. I remember the first visit in 2011 most vividly. Not simply because it was the first time, but because it was different. It’s like going to Disney World every year for a decade. The only one that you remember is the one that it rains all day, or your brother gets kicked off of a ride for trying to punch Goofy’s nose off, or you get chosen as the crowd representative for a highlight show- you remember that. I also remember this past Monday pretty well- those four visits in between, however, all run together.

That first visit was surreal. That’s how I remember it. The Doctor looked at Tiffanni and within five minutes made his diagnosis. Five minutes. I could hear it in his voice from the second that he shook her hand. “Squeeze,” he said. “Hmm.” The difference between a “Hmph” and a “Hmm” is all in the tone. “Hmph” has a distasteful snide sound to it, but “Hmm” carries an inevitability that is easy to recognize if you’re listening for it. I’m sure that my subconscious knew what he would say, I mean you can’t watch the changes for a year and not take note, but I was shocked all the same.

“Uh oh, I hear the change in your gait,” we were greeted with as we made our way down the hall for the sixth time. Hmph. So that’s all that represents the last year of our lives? The change in her gate. We sat in the same two chairs across the same desk in front of the same doctor. His back to four bookshelves of medical journals, family pictures, med school textbooks, and a candle. There was plenty of time to appraise the contents of the sterile shelves while he skimmed through five years worth of scribbled notes to himself. I sat there readjusting my posture every few seconds, wondering if he had a made a note of her gait from last year.

The summation of the last year of our lives is the size of Tiffanni’s gait. A smaller, wobbly, slower step, she leans against me more now, especially going up stairs. He has no idea how I’ve fought getting a wheelchair all year. We went to Six Flags at the end of last summer and took a wheelchair. My kids cried to themselves when they saw her in it for the first time. I could have done better preparing them, but what do you say? It’s less about what to declare and more about how to answer when the questions come. So, I’ve fought it. Once you sit in a wheelchair, you never get out of it again. Ever.

Her stride. She uses it to stumble down sloped aisles to take her place in church now. She lays sprawled out in an entire pew, just me and her, sometimes her and my parents or her parents. Right in front of the side of the stage where she used to sing. Last fall I found a cassette tape of her and her best friend Candy singing with her music minister Ben. They recorded a full album of worship songs out in Texas in the early 90’s. I came across a box of them packing for our move, a whole box, and pulled out three before I tossed the rest out. They were stocking stuffers for Addy, Car, and Brayden this Christmas. “Your mom used to be the greatest singer. I thought you’d want to hear her and somehow unearthed these while we were packing!” Santa came through.

Her traipse. It’s the closest thing to a skip in her step that I can find when I’m taking her to get into a pool. She loves the pool. We discovered it this year, the only thing that calms her and stills her body. She sweats through every month, burns through every calorie, including the 1100 calorie peanut butter milkshake that my mom makes for her every afternoon as a “snack”. It was our quick fix when we couldn’t keep up with her weight-loss this winter. At best we’ve stabilized it. She can’t eat enough food to compensate for the energy that she burns as she moves erratically all day. Lying, sitting, standing, there’s no reprieve anymore. And then we found the water. She now asks to swim everyday, so we load up the car as often as we can and find a pool, lake, creek, ocean. Anything for a reprieve.

So much taken, not a lot given. Yes. It’s been a full year of change. Not just for her, but for the kids, and me, and my parents, and her parents, and everyone that is around her. This, at times, mindnumbingly slow lumber, and at other times, barreling gallop has been anything but stagnation.

So yeah Doc. There seems to have been a change in her gait. We’ll see you next year.

I don’t know who thought makeup was a good idea, I don’t care much for him- I’m certain it was a dumb guy named Benedict. I know what you’re thinking, “Trust me, some people desperately need it.” But I’m pretty sure we’ve just conditioned ourselves as a culture to think it’s important. Kind of how each culture has a different concept of beauty. There’s a group in Thailand that likes long necks, not beer, like necks. There’s a tribe in Ethiopia that thinks body scars are super-sexy. America has its own self-imposed standards of beauty. Dang you Benedict.

I spent half a day at Clinique a few years ago learning how to do makeup. I have the patience and attention span of a toddler and inwardly pitched a fit as I was introduced to primers, lipstick, lip gloss, lip liner, foundation, powder, BB cream, blush, bronzer, mascara, eyeliner, eye shadow, and of course Clinique’s 3-step face cleansing process- it’s a racket! And concealer was invented by Satan. No wonder some women wake up with the roosters to get started. Surely long necks are easier. But, I figured it out because it mattered.

We’ve also spent some time with several different hair stylists trying to figure out the balance between a cool hairdo (because Tiff gets so hot), and one with some style. Not to mention, one that is easy for me to maintain. A tall order. I suggested a Sinead O’Conner, but it didn’t fly. Tiffanni was a hairstylist for the few years before she was diagnosed with Huntington’s. I remember the day that she graduated from hair school, we took off to Savannah in a convertible for the weekend. I had gotten tickets to a taping of the Paula Dean show because Tiff loves the Food Network and I love convertibles. I was hero for the weekend.

I’ve held out on some big girl stuff for as long as I can. I think that it had something to do with not allowing my daughters to grow up too fast, because you know, girls grow up way too fast. We don’t shave legs, do makeup, have cell phones, have boyfriends- stuff like that. But I finally gave in on makeup. Addyson starts 7th grade this fall and I thought we’d glide into this stuff with some powder and lipstick. Oddly enough, she didn’t need much of a lesson on how to do makeup because she’s been applying it for years. She learned eyeliner, powder, lipstick, blush, mascara, and eyeshadow before she was 10. Addy and Carsyn share the fun with me in doing their mom’s makeup. A break for me and a joy for them, at least when I let them experiment. Not always a great result.

My kids have grown up in some ways that I didn’t anticipate. Tiff and I used to talk about when we would let them have certain privileges, and we always agreed, later is better. I guess we are old-fashioned that way. I can only assume that usually little girls learn to do makeup from having someone do theirs, watching someone put her makeup on, or practicing on themselves- clown cheeks and wobbly lipstick smiles included. But mine received lesson one on their mom.

Carsyn didn’t understand the concept of blush at first. Layering a pink streak from lips to earlobe. But she got it. She’s patient with Tiffanni’s movements and talks gently to her, “Ok momma, open your eyes wide. Here comes the mascara.” Addyson likes hair duty more. It seems like a limitless canvas of artistic expression. I’m waiting for the day when Tiff ends up at church with dreadlocks.

So in a not-so-surprising twist, my little girls are not so little anymore. I’ve protected them from every thing that I can to keep them from prematurely advancing. But I guess Time with her deep red rouge splattered cheekbones, her water proof black mascara, and her beautifully draped and curled blowout beckons my babies onward. There’s no stopping her- not only does she stop for no one, but she expects to be all dolled up in the process.

My earliest vacation memory is the ocean. Everything lives in superlatives in the past, especially if you’re young- bigger, stronger, longer, colder. We drove across this giant bridge in Pensacola, FL that took days to cross. I envisioned our car barreling over the rails and into the mouth of Jaws, a big thanks to my negligent parents for letting me watch that demonic horror flick in elementary school. We stayed on the bayside and built sandcastles and ate fresh seafood every night. Memories are funny that way.

Another time I was in high school and we visited the East Coast of Florida- New Smyrna Beach. A tropical storm was brewing in the Caribbean and had sent its fringe fury toward our beach. My dad stood on the shore and watched me and my two brothers body surf for hours. The waves were the largest that I had ever seen, towering above us before they crashed over and over onto us. We would position ourselves, backs to the chaos, facing the sands. As the beast would pull to swallow us whole, we would begin to swim, flailing arms, motoring feet. Timed just right, we could float to the surface of the top of the wave and let it rumble underneath. Tossing and crashing below, we could feel the uncontrolled fury just below our bellies as we tamed one wave at a time with little doubt that it could turn on us at any time and pummel us into the scattered sand.

Late last summer we were invited to some friends’ house to watch the kids swim and barbeque. Tiffanni hadn’t swam in over a year. I was too scared of what her body would do. It felt like another taken for granted pleasure ripped away by this disease. Dis-ease, it makes sense when you see it that way. Somehow my friend talked me into letting Tiffanni swim. “I’ll swim with her and won’t take my hands off of her. It’ll probably cool her down.” Another unforeseen consequence, because she never stops moving, she’s constantly burning calories, always hot, always sweating. I acquiesced.

And something happened. Unexpected. Not just unexpected, the opposite of what I expected. Her body stilled, slowing to a rhythmic exhale and inhale, and she swam. Wrapped in a fluorescent purple noodle, she glided around the pool. Her arms motionless, her legs calm, a hushful peace buoyed her in the salt water swimming pool. It was as if she had stumbled upon Ponce de León’s healing waters. Huntington’s and gravity, now reckoned powerless, traded places with Tiffanni as she regained control if only for a few moments.

For the rest of the year I anxiously awaited this summer. Was that moment an anomaly, or did water change the stars for a few moments for us?

Over the last several days we’ve spent some time at the beach as a family. It’s ironic that the beach, which requires so much work- sunscreen, water, snacks, an umbrella, a shovel and pail, change of clothes, beach chairs, boogie board- once entered, can be so undemanding. We enter the ocean, the great equalizer of effort, and we float. Where we are all the same. Where the normal life of the past revisits us. Bobbing rhythmically with the waves, absent of tedium, in tandem with the vastness of what unites the world. The ocean. And we all swim, all of us.