When Tiffanni was diagnosed with Huntingtons almost five years ago, it didn’t shock me. It wasn’t a relief in the way that when something is wrong it’s nice to have an idea of what is wrong. It was a relief in that we could blame something for a couple of job losses, her new clumsiness, and some erratic behavior.

I don’t remember shock. It might have been because I knew what the doctor would say long before we scheduled the appointment. Or it might have been shock masked in indifference. The human body is brilliant in that it usually does what it needs to do to communicate changes that need to happen. All of us have headaches. The body gives us that to tell us to do something. Unfortunately, we usually do the wrong thing- take Tylenol. The problem is that it’s not like we have an acetaminophen deficiency. It’s because we’re dehydrated, or tired, or stressed, or overworked, or need glasses. So when the body shuts down to life-changing news with no response- it’s saying something.

Most people have heard of the stages of grief. DABDA. Denial, anger, bargaining, depression, acceptance. I wish they were that clean and orderly. It would be easy to see a season of denial and tell yourself, “Be ready, soon you’re going to go through a season of anger. You’re not going to know why you’re irritated at the world, but it’s part of the process.” That would be nice. But it just doesn’t work that way.

It would also be nice if the stages acted the way that you think that they should. Most think that denial means this nonacceptance of the facts of loss. “No, he’s not dead.” “No, you’re lying to me, that didn’t happen.” And it certainly comes out that way once in awhile. But it usually shows up in a different way. The most common way is that denial shows up by making a person believe that their loss hasn’t affected them as deeply as it really has. “I just have to be strong for my family right now.” “I thought it would be very hard, but it hasn’t affected me as much as I thought it would.” All crap.

I was super lucky. I was in a doctoral program when I found out about Tiff that required me to meet with two different counselors- not because of the diagnosis, it was part of the program. Those meetings changed everything for me. I remember my first meeting ever. I thought that I was different, that I was handling my situation inappropriately. I was very nervous to admit some of my thoughts. I kept playing this whole scenario out in my head, all the way to the end. And I just knew that that was wrong. And for some reason I told my counselor. Ready for a chastisement, “Jeremy, you can’t do that. You have to take things as they come,” or something like that. And instead he looked at me and nonchalantly said, “Well of course you do. That’s what everyone does. In fact, if you didn’t play all of it out, we’d have to talk about some more serious stuff. You’re in an okay place.” And with those few words, the trajectory of my health, self-grace, and coping changed forever.

One of the first things that I learned in professional counseling was that I had to exercise. My body needed endorphins and hormones and such to be firing in order to balance the depression that would inevitably come. You did see the DABDA, right. Good luck avoiding one of those stages. So I exercised. I tried all kinds of things. Tennis, mountain biking, weights, swimming, and most recently running. I’ve ran off and on for almost a year.

A few months ago I decided to set a goal. A triathlon. Who knows why. My dad said that 40 year olds feel the fleeting passing of youth and so they try to hold on to it. Thanks Dad. I’ll be 40 in a few months. Sayonara youth. My triathlon is in October. Mostly so that I can still land in the 35-39 age bracket. Ironically, the 40’s age bracket is more competitive. But I didn’t know what to expect. I don’t know what to expect. I’ve never raced anything in my life that I needed to train for. So, to give myself a little litmus test and to see whether I would be ready in October, I ran my first 10K this weekend.

It was hot, humid, hilly, and hellacious. The night before I got nervous and googled “first race tips”. The Google told me to “Fight through the pain” and “Have a mantra”. I’m a pretty simple man, so my mantra was, “Fight through the pain.” And when I started mile 2, I started saying it. And I repeated it for the next five miles. After about 5,000 repetitions, I finished it. The mantra and the race.

So I ran. While running doesn’t change my situation, it changes my perspective of it. And at least for today, it keeps me from running away from my situation. It helps me to stay healthy physically, emotionally, and mentally. So, if you see me out early in the morning running, please don’t run over me with your car. That wouldn’t help very much.

“That day, for no particular reason, I decided to go for a little run. So I ran to the end of the road. And when I got there, I thought maybe I’d run to the end of town. And when I got there, I thought maybe I’d just run across Greenbow County. And I figured, since I run this far, maybe I’d just run across the great state of Alabama. And that’s what I did. I ran clear across Alabama. For no particular reason I just kept on going. I ran clear to the ocean. And when I got there, I figured, since I’d gone this far, I might as well turn around, just keep on going. When I got to another ocean, I figured, since I’d gone this far, I might as well just turn back, keep right on going.”

I was a pretty good kid. My greatest fault was my mouth. Not the shape, arguably, but the use. I just couldn’t keep it shut. There was something percolating on the inside at all times and it just had to get out. Words. And they always bid farewell to my mouth at the worst possible times. You know how most people think something, but there’s this tactful voice on the inside that says, “Now’s not the time for that.” Yeah, my voice on the inside had laryngitis.

However, over the years I’ve mellowed. There aren’t as many things up there rapping on the door to get out. Still plenty, but not as desperate to be heard. I’m sure some of my friends would argue, but they wouldn’t have known me as a kid. I had to be heard. I read once that we all mature into introversion. Some of us just have a longer journey. A Pilgrim’s Progress.

A study came out a couple of years ago that said that women had a larger amount of Foxp2 protein in their systems. This protein has a connection to chattiness. According to the survery, women speak on average around 20,000 words per day while men speak closer to 7,000. Maybe I had some extra Foxp2 laying around unused when I was younger, but it’s not there anymore. It was handed down through heredity to my two daughters. Every ounce.

They talk.

Like, they talk a lot.

I’m quite certain that they’ve been mainlining Foxp2 for years. Addicts.

Addyson talks about details. She came to me the other day and asked, “Dad, do you want to hear what kind of cake that I have planned for your birthday?” I looked up from my book as she anticipated a yes from my eyes I suppose. “It’s going to be a three layer cake. I’m thinking red velvet which is your favorite. Do you want butter cream or cream cheese icing?” I think I blinked. “Cream cheese of course. No one eats butter cream with red velvet.” Then she began to describe the design. I would tell you about it if I didn’t check out around the types of icing tips that she would use for the bottom of the first layer. I woke her up a few mornings ago and she opened her eyes and said, “Wanna hear about my dream? I was in an alternate universe…” And we were off. No warm up, no prep, just go.  She talks cake design, party favors, dreams, cheer routines, types of formations, musicians, friends’ drama, books- she doesn’t know what a synopsis is, Dance Moms, clothes, shopping, movies (and through movies- she commentates because who wanted to hear the actors anyways), you name it- she uses her words.

Carsyn uses her words in a different way. She’s inquisitive and thoughtful. Easy answers don’t suffice. Fairness is the Golden Rule It won’t be long until she puts God on the witness stand and has Him answer for the injustices of the world. We had a crazy conversation the other night. “Some kids called me and the other girls lesbians today at school and it upset me.”

“Why?”

“Because they meant it ugly and it hurt my feelings.”

“Are you?” I asked.

“A lesbian? No.”

“Then why do you care? You know the truth so why does it matter?”

“Because it hurt my feelings.”

Then I tried to use dad logic. Not worthwhile most of the time with Addyson, she needs to be felt, but Carsyn processes differently. “It’s kind of like if someone called you a mean racial slur. Would that hurt your feelings?”

And my 11 year old out logic-ed me. “No dad. You see, I’m not black or Hispanic or Asian and will never be. I can’t be. I can’t change into something that I’m not. So that wouldn’t hurt. But I could be gay- it’s possible. And so could one of my friends. So, it hurt my feelings.”

And that’s our conversations. Deep thoughts from an eleven year old. Questions about her mom. About the possibility of the future and her career. Her college. Scholarships. Marriage. Children. Fears. Joys. She uses her words.

There are these words that have to come out. They are tempered by personality and experience. And I have to work hard to hear all of them. It’s obvious that I don’t use as many as they do, but I also have a hard time hearing as many as they use. But I focus until I go cross-eyed sometimes. A half dozen classes in counseling and psychology didn’t prepare me for this. And I wasn’t born with the gift of listening like their mom was. She could feel and empathize with every emotion. She could infer what wasn’t there and intuit what was before it was even said. You could see it in her eyes. She laughed when someone laughed and could release a tear as soon as the person across from her began to weep. She would have won a gold medal in synchronized crying. She would have laid in bed with the girls for hours talking about life, listening to middle school gossip, and stifling drama. We would have rarely used the radio on road trips. Every family fun game night would have been hijacked by conversation, which is probably the point anyway. And she and I would have partnered to be the best hearers ever. If I’d only known that she would lose her words so soon I would have listened more, concentrated harder, focused better. I would have filed some of them away in a drawer for a rainy day. Shoulda, coulda, woulda. Today, I just miss her words.

Saturday mornings are for sleeping in. They’re for lazy traipses into the living room only to plop back down on the couch and submit to the weight of your eyelids once again for a mid-morning nap. They are for brunch. Not breakfast because that would require cooking and eating too early which is blasphemy to a snoozy Saturday morning.

But this past Saturday morning something encroached on my well-planned unplanned day. Addyson is a cheerleader and her squad was invited to cheer at a special needs sports program’s opening day. So us early birds rushed down the interstate 30 minutes south, sans breakfast (to buy an extra few minutes of sleep) at dawn so that we could beat the sweltering August heat.

We arrived to a bustle of activity. Moms and dads, brothers and sisters, coaches and guardians aiding in the ready-making of their loved one. The opening day ceremony field was littered with wheelchairs, walkers, canes, and arm braces. Children stumbled around the field in an unorganized commotion as their coaches tried to coax them into standing still for the pomp and circumstance. Good luck with that.

The stands were full of eager and nervous fans when out walked, to my surprise, the voice of the Alabama Crimson Tide- Eli Gold. The voice that had called half a dozen national championships, colored the games of the gods as he commentated arguably the greatest college football program in the history of the sport, stood at the center of the field and helped tie a few shoes. When he spoke I assumed that it would feel misplaced. His usual Saturdays spent with super-humans, this day he would paint the play of the powerless.

With the opening pitch thrown, the games began. The coaches and helpers and cheerleaders numbered a 1:1 ratio to the players. The competitive fury of a normal sports day was replaced with patience and gentle voices. The stands felt the same as the crowd roared for every foul tip, every bunt stretched into a triple, every in-the-park, in-the-infield homerun.

The next day churches would fill with millions of men, women, and children in their Sunday best, but they would be hard pressed to find a more holy place than this sweltering August Saturday morning ball field.

There’s something sacred about a group of people who sacrifice their time and effort for a group of unnoticed children. Those who bring value to the unvalued by noticing the unnoticed. Where longsuffering replaces the fever of competition and the unabled bodied take center stage. The sanctity of that space is unmatched by any ornate stained glass cathedral.

Tiffanni doesn’t offer the same energy and life to every room that she once did. For the first time that I’ve known her, she fades into the corners- my wallflower. Her conversations are labored, her attention wains. But more times than not, when we’re out, when we’re at church, when we visit a friend, someone gets down on a knee, looks eye to eye with her and focuses all of their attention into her face. She’s slow to respond, a tardy grin on her best days. She can’t initiate, can’t reciprocate in the way that she once did.

But I notice.

I notice the patient one-sided conversations from a friend. I see the hand holds, cheek kisses, arm rubs, neck massages, minutes spent fanning the heat away. Each moment of value to the unvalued doesn’t escape me. I have never been a great giver or receiver of gifts, but there is none greater than the attention given my bride. So, to you who care so much and have noticed- thank you. If there are jewels or crowns or robes or mansions in the next life, and if I somehow wind up with something- you noticers can have mine. But I doubt it will come to that, for in my understanding of the Supreme, you’ve earned the greatest reward heaven bestows.

There was a time that I could sleep until 2pm in the afternoon. No breaks, no getting up to let the dog out, no Mother Nature reprieves- just sleep. I would stay up until 1am or 2am and crash. Twelve, thirteen hours of siesta and just because I enjoyed myself so much, sometimes I would take a nap later. In my college apartment, my roommates and I fitted the windows with aluminum foil and blacked out our room. A bomb shelter where nothing got in or out. Not that sunlight was issue for me, we tricked our brains into thinking it was always time to sleep. That’s what you do when you stay up all night playing ping pong and need to nap for a few hours during a class break.

Nights have gotten hard lately. Sleep is a commodity. Huntington’s affects movement, cognition, and mood. For over four years I never saw much of an effect on Tiffanni’s mood. She was happy, content, even carefree- especially to carry so much. But lately, her anxiety is getting the better of her. Household items are out of place. She needs Tylenol. Her hair needs to be brushed again. She’s hungry. She’s tired. She can’t sleep. She won’t sit down. The kids are too loud. The kids are in the house. We have kids. And for a while now, her seemingly incessant worry has creeped into our house sanity. It can be especially tough when I’m not home sometimes. Who knew that I could have a calming effect?

So I called her Doctor and told him that something had to give. She had to sleep. I had to sleep. So he prescribed Ambien. Tiff used to sleepwalk and talk in her sleep. One time I caught her digging through a potato bag at the bottom of the pantry. “What are you doing?” I asked, arrested from a REM cycle after hearing the cabinets banging in the kitchen.

“I’m looking for my pants,” she said. The look that followed inferred, what else do you think that I would be doing?

Another time she woke me up in a panic with an AK-47 cadence of nudges to my kidney. “Someone is in our shower!” When I came to my bearings, I thought to myself that that was impossible.

“No one is in the shower Tiff, you’re asleep.” But it’s hard to reason with someone and convince them that they are asleep when they’re carrying on a conversation with you.

“I thought you were the man,” she responded. Not the man, I had never claimed that (except when bragging about my unbeaten Monopoly streak.) The man. So I got up to check the shower. I slung back the shower curtain, fist cocked, just in case the .1% chance that someone was in there, I was prepared for.

“See,” I said, “There’s no one in there just like I told you.” I glared at her, only to hear her snoring again.

But Ambien was another thing altogether. Not only did she not sleep, she got up and did chores. I caught her sprawled out like Cinderella cleaning out the bathroom vanity one night. Brushing her hair for over an hour another. And the whole time talking to me. If I wouldn’t respond, she would nudge me over and over again. I retreated to the couch several times, but she would go wake the kids. So I called the Doctor again. This time he prescribed something different.

And she slept.

But, there was a tradeoff. Her response time slowed. Her ability to reason and converse changed. Her balance regressed to early childhood. Her fine motor skills lessened.

But she slept.

They don’t give you a playbook on the household health quotient. My sanity and her incoherence vs. my insanity and her sense of reality, her anxiety. If I just knew the right thing to do, I would do it. If someone said, “On Monday, just grin and bear it and let her breathe. But on Tuesday, medicate her so you can catch up on sleep.” That would be simple. But there’s no way to calculate the cost of stress in a home. Not on her, not on us. There’s no textbook that offers an equation to solve for health. So, we wing it. I fly blind. I guess and pray that it’s the right thing.

I’ve been married to the same woman for almost eighteen years, but she’s not the same woman. I don’t think that I expected that she would be. But who knows what you expect when you’re a the-world-is-my-oyster kid. And it’s not like the vows promised that nothing would change- quite the opposite actually. There’s a sense of contentment with the trajectory and growth for one of us. A sense of loss and sadness for the decline of the other. And it frustrates me that they might be inextricably connected. Some tradeoffs are good. Some, not so much. I just wish that I could discern the difference.

Four inches. That’s one inch for each season over the last twelve months- Fall, Winter, Spring, and finally Summer. He was devastated when he stood under the green mark at Goliath last year and it was obvious that he was two inches short- and that was with his tall shoes on. “Sorry, you’re not quite there yet champ.” I could sense the disdain that Brayden collected in his heart for each of the teenage gatekeepers doing their jobs. But not this year. Four inches in a year catapulted him into the Ride-It-All Group. So he did.

Six Flags has made its way into tradition with my crew. We’ve gone every summer for several years now and the kids look forward to it. Tiff starts asking about it by October. They count down the days and catalog the rides by name. I had to tell the girls last year to take it easy talking about the attractions that Brayden couldn’t ride because he wasn’t tall enough yet. Goliath, Batman, Superman, DareDevil- every young boy’s dream. I also had to tell them to stop talking about the Teacups, you know, the one he was plenty tall enough to ride. Why couldn’t it just be named Deathtrap or Tilt-a-Torture. Something that would allow him to keep his man card.

We spend a bazillion dollars every June to spend a single day at Disney, the Happiest Place on Earth, and all the kids talk about all year is Six Flags. They’re practically giving away tickets. The kids’ school gave them free tickets for reading books throughout the last school year. Reading books. Isn’t that like a requirement at school. And then Tiffanni and I got half-priced tickets just for breathing.

But Six Flags is hard. Whoever laid it out apparently worked for the US Government’s Health Initiative. There are no flat areas, it’s all peaks and valleys, summits and fjords. Which is hard enough walking all day in the blazing asphalt desert heat, but we’ve got a wheelchair. I hate it, but it’s wheelchair or nothing. Tiffanni’s balance is worse than ever so it’s her only reprieve. Now I’m an eternal optimist, but I don’t know how to stay positive with three young children, a disabled wife, a wheelchair, and a day in the Sahara. So I call in the big guns. My brother and sister and their spouses.

My greatest fear throughout the process of this disease is that my kids would miss out on something. And then missing out on something would scar them or inhibit them. Doing double duty on “Dad, watch this,” and “Guess what we did today,” and “Dad, we need to talk,” is a job for two loving parents. There’s this brilliant design where parents nurture their kids’ dreams and talents and personalities and the kids have the greatest shot at health and stability. But sometimes it just doesn’t work out. It rocks me some days. I just can’t do it. I’m sure there are super hero single parents out there that fill all of the gaps, but I’m not that. Far from it.

So I don’t. I don’t fill all of the gaps. I don’t even fill most of them. Because the greatest gift that I have ever received are the gap fillers in my life. The cookers and cleaners, attention givers and school shoe buyers, dream nurturers and problem listeners, clothes shoppers and dessert makers, grass cutters and clothes washers, meal preparers and cart-the-kids-all-over-the-world drivers, ball game watchers and house builders, pastors and Sunday School teachers, “just because” gift givers and school project helpers, hair cutters and braid tie-ers, sports coaches and swim lesson givers, and Six Flags kid ride partners and wheelchair pushers. It takes a village to raise kids with health and stability. Where they don’t miss out on anything even though they’re missing out on so much. It takes a village to fill all of the gaps and make sure that kids never doubt that they are loved deeply and cherished daily.

So when my family needed a village, they got the best. This is my village. And these are my people.