Her hands were so cold. 

So she said. I told her to slide one into my circa 1995 chocolate brown leather jacket pocket. Along with mine, we filled the cubby and my heart revved like a little Honda 50cc in second gear. This was getting real. We laid on the freshly dewed grass beside Lake Bonnie and stared at the stars, at least that was my excuse, two cold hands melding hearts. That was our first romantic touch. 1996.

She drove a stick shift, a maroon 1995 Nissan Altima. I watched her hand as she changed gears. If you knew her, there was nothing surprising about the way that she drove. I could never figure out why she wanted to drive a stick, she was already short on hands between coffee, make-up application, a cell phone, and you know…driving. 10 and 2 was replaced by 6 and a knee. She loved to drive. For seven years she told me that the greatest thing that the disease had stolen from her was driving. 

Three years ago, I found myself reaching for her wrist. She was unsteady and I couldn’t just hold her hand. I was afraid that it wasn’t sturdy enough to keep her upright if she began to fall. She was frail and delicate. I had to keep her out of the inevitable wheelchair as long as I could. Some semblance of normality. We moved from holding lovers’ hands to holding a wrist for balance as she stumbled through hallways and aisles and foyers and lobbies.  

They say hindsight is 20/20, which isn’t actually true. Science has already shown us that we recreate the past by changing our memories. Framing them the way that we want to remember. Tiff hadn’t eaten in weeks. Barely drank anything each day for weeks. So, it shouldn’t have come as a surprise when she woke up with a 105 degree temp Sunday morning- August 26. I immediately phoned her nurse, but she wasn’t available. The on-call nurse came and helped get the temperature to a manageable target. Triple digits. 

“Do you have a minute, I’d like to talk to you,” she said. I got mom and dad so that we could hear the gameplay together. Just another round of medicine I assumed. “Tiffanni has started to transition.”

Nine days before, Tiff and I saw a movie and ate at Dairy Queen. Well, I ate. She didn’t want anything and I couldn’t talk her into it. But I didn’t think anything of it. Transition. Three days before she went shopping with her dad. Transition. We did what most do. We argued with the nurse. She didn’t know Tiff and our situation. She was new to our family. Tiff just didn’t feel well, but would be fine when her fever went down. 

“In my professional opinion, you have two to three days.” I’ve never heard more jarring words. There was no container to put them in. They just fell out onto the floor. No way to process, no way to decipher, life-changing words.

“Sometimes they rally. Sometimes they catch a second wind and go back to normal for awhile, but I wouldn’t expect that. We can come check on you whenever you need- just let us know.” And she left. Four people in the house and I had never felt more lonely in my life. Never more hopeless.

The kids came home and I sat them down on the couch. They immediately knew something was wrong. A few years prior, I sat them down on the couch to tell them that our 15 year old dog had died while we were on vacation. I think it was my tone, or the way that I said, “Sit down, I need to tell you something.” I’ve traumatized them to couch sitting family meetings. I’ve been working on redeeming the couch with family devotions, but they still have big eyes every time that we sit down for a conversation. I usually start with, “Everything’s fine. Let’s sit down for a few minutes and talk.” It takes a few minutes of conversation for their hearts to slow down. It’s amazing how a single act, a single moment can condition a person.

 We cried a lot that day on the couch. The escapist part of me kept thinking that a few months from now, everything would be easier. The dad part of me just cried and listened. I was pretty good at both parts that day. “Can we see her,” they asked.

“Of course, but she probably can’t wake up. But you can climb in the bed with her and I bet that she knows you’re there.” So they took turns looking at her. Running their fingers through her hair. Laying in her arms. Crying on the bedsheet. Three puddles. Kids growing up in minutes. I felt sad. And guilty. And tired. And lonely. And protective. And somber. And a hundred feelings that don’t have names. 

We spent the next few hours oscillating between pretending like it was a normal day and talking about how it wasn’t. Homework and a TV show. Dinner and showers. A video game and bedtime prayers. All the while Tiff lay, transitioning, in the next room. Living and dying, the full spectrum, under the same roof. 

But then something miraculous happened. I went in to check on Tiff and she was awake staring at the ceiling. “Whatcha doing,” I asked. 

“Nothing.”

“The kids want to see you,” I said. I called for them and they all came from their normal life grief havens. That was one of the most special moments of my entire life. Where the living and the dying held hands. Ever briefly, but held hands nonetheless. 

Over the next hour, we talked, and laughed, and reminisced, and pretended we weren’t crying. I caught each kid turn away from Tiff to wipe tears, only to turn back and belt out a song. For the life of me, I can’t make sense out of what they sang to her. A three-part broken harmony rendition of the Star Spangled Banner. Belted. Like top-of-the-lungs. Who knows what that was about. But they sang and Tiff smiled. Each kid kissed her goodnight, we prayed, and everyone went to bed. “She rallied,” I thought, “That nurse doesn’t know us.” And I went to sleep. 

Around midnight she woke up again. I heard her stirring and woke up as well. “I’m hungry,” she said. 

“You are? How about I go fix you a smoothie,” I responded. And she consented. She hadn’t eaten in days and here she was hungry. “What does that nurse know?” I thought. For the next hour we talked and laughed and she ate. Looking back, I think I knew it was our last conversation ever, but then again, hindsight plays a few games. I climbed in the bed with her and held her hand. Frail. Delicate. Sweet. 

The next morning her fever skyrocketed. It was obvious what had happened. She woke up to tell us goodbye. I called in all of the family because the next few hours would be the last. By mid-afternoon we were in the last moments. Twenty-four hours filled with everything that life offers.  

Her hands were so warm.

And she breathed her last breath. Just me and my sister talking in the ad hoc final stage bedroom while other family were taking a break. “It’s going to be a long night,” Hospice had said. It didn’t feel eventful or surreal. I had thought of that moment so many times over the last seven years. It wasn’t like any of those forecasted moments. Katye and I talked and I glanced back and forth at Tiff’s stomach, heavy breaths. Then they just stopped. I held her hand and waited for them to begin again. Please begin again. She was gone.  

I’ve replayed those moments a hundred times in the last twelve months. Twelve months. I’m not sure how many of you are still there, but I just needed to put this on paper. For me. For the kids. However I remember those last few days, factual or framed, I just needed to remember. As I look back over the words above, they seem so fragmented and disheveled. Just a shotgun blast of random thoughts to remember those last few days. Words are a sorry substitute for pictures. And that’s what I remember most about those last days. Pictures. Glimpses.

Thank you for helping me to grieve well. For reading my words and for praying for my kids. Thank you for your kind thoughts, both stated and just felt. I am grateful to have such amazing family and friends. Thank you. Sincerely, Jeremy.

In January I had an idea to go back into the studio and write some new music. Lots of people know that I’ve recorded three albums. By lots, I mean dozens. Those albums were amazing outlets for me to work through my thoughts, but more importantly, I just enjoy writing music. In January of this year, I started a new song and had a brilliant idea. I would write a new song every month about what I was thinking, feeling, experiencing. But I couldn’t get past the first line. It’s a really good line. I’ve sat down at least ten times to get past the line, but it just won’t come out.

So, in February, I started a new song. It has an amazing feel. Billy Joel and Elton John in my head. A little funky, but straight piano rock. (I have this app on my phone where I record my melodies and ideas because I’ll forget them so quickly if I don’t.) I’ve got a tight piano groove and a mumbled, monosyllabic mutter throughout…but no words. Not even one word.

Again in March, I tried. Another really cool vibe, but no words. April, same thing. That song is epic. Really big, really fun. An anthemic chorus. No words. 

For those four months, I have four tunes and one line. I need a second line.

I started reading Steven King about four years ago. Actually, I read his book On Writing about eight years ago. It’s part memoir, part how-to-write. It’s so good. It made me want to write even more. After reading it, I assumed that I should probably read some of his fiction. If he can write about writing that well, surely he can write. I began with a tome- 11/22/63. I was blown away by the character development, the story arc, the creativity. I just kept reading him. A few other fiction books mixed in after I finish one, but I keep coming back to him. 

Except that I’m in the middle of one right now, and I’m having a hard time picking it back up. The story is good and I’m interested. But I keep coming up with other excuses of things to do. (I only read one fiction book at a time, but I’ll have several non-fiction books going often.)

I love fiction. It is often more honest than anything else that I’m reading. Not real, not factual, but true. But I haven’t picked it back up in over a month. Maybe two. I’m sure a counselor could sort it out, but I’m log-jammed. 

I’ve sat down to write here a dozen times over the last year. But nothing will come out. Every time that I sit down, I have this story in my head that I need to tell. But I don’t want to. I want to talk about my life. For me. 

I always wrote for me. My memory is lousy, and I needed to remember. I have nearly two years of my life on paper. Holidays and normal days, silly conversations and important ones, comedy and tragedy. And I’m so glad that I wrote them down. I now have a collection of these beautiful stories of our life for a season. Writing helped me to see the sacred inside of the struggle. And I haven’t reflected for the sacred in a long time. Because every time I sit down to write, I need to tell this story. But I don’t want to. 

I don’t want to tell the story of that last weekend. I don’t want to remember the final breath. I really don’t want to see my kids faces again when I told them that their mom was gone. I don’t want to go to the funeral again or watch my brothers and nephews carry the casket. But I need to. It’s time to. It’s time to unjam the logs and write again. Not because writing is magic, but because writing helps me to see. To see the beauty and the sacred in the mundane and the monotonous. To see joy and to see pain. To see that tragedy and suffering aren’t the worst parts of life, but that they are simply parts of life. 

So, tonight I’m going to pick my book back up. Tomorrow I’m going to go back to the piano and sit there until I get that second line. And sometime soon, I’m going to tell the story. 

This feeling is foreign to me. I haven’t spent enough time with it over the years to discern it, to define it. The distractions of a noise-doused life of busyness and what’s-next anticipation easily hide its soft footsteps through my soul. But loneliness lurks.

I think that I could have predicted most of my feelings. Most of my experiences. Care-taking is not new to humanity. In fact, all of us will either die unexpectedly, give care, or be taken care of (or all of the above.) That’s pretty much the options. Which makes care-taking a nearly universal human experience. Not to mention, if you were ever a baby, you were cared for. I think that about covers it.

But this feeling isn’t one that I know how to contend with. It’s almost unidentifiable for me. Just an empty, unbelonging. By the way, I only try to write about this season because I want to remember it. I have belonged and I will belong again. The again will be sweeter because the unbelonging is recognized and real. I suppose there’s a similar emotion to empty-nesters. A recalibration of relationships. And this wouldn’t be so hard if the past wouldn’t have been so satisfying. There was never a moment of our marriage that I felt empty, displaced, or unseen. Now, I embody them.

My life is not absent of love and attentiveness. I am surrounded by family, friends, those who minister and need ministry. Yet, lately, this unbelonging echo chamber stifles any contentedness of companionship that tries to reinforce kinship. It’s odd to know one thing and to feel another. To logic one, and emote the opposite.

In some ways it’s less about loneliness and more about discovering a new identity. I lay in the beds with my kids at night and talk about love. I sit at the dinner table with my family and inhale life. I share meals, conversations, board games, concerts, car rides, movies, ministry, and being. This dis-ease is confusing. I am not alone. Just lonely.

 

I stopped using an alarm clock six months ago. After being sleep deprived for the first half of 2017, it was nice to start catching up. I have friends that can run on three and four hours of sleep, but I need a solid eight most nights of the week. Several months ago, there were days that I watched the sun set only to wrestle Tiffanni’s demons all night and greet the sun rise the next day. Those days are behind me, but their memories haunt. Every once in awhile she will wake up in the middle of the night and wake me up to go to the bathroom and I’ll be flooded with a thought, oh no, here we go again. But those moments never last. Terror false alarm.

When school started back in August, mom and I made a decision about how to do mornings. She would get the kids situated and off to school- lunches made, breakfast eaten, kids in dress code, Brayden somewhat coordinated, and out the door. I would go through Tiffanni’s routine with her.

By personality, I’m not a routine lover. Spontaneity and adventure are synonymous. I like variety, choices, I hate to be hemmed into one option. It feels like prison. I imagine it’s the way that my independence shows itself. On the other hand, Tiff needs routine. It makes the day go better. Her weeks are nearly identical day to day. What she wears, what time she eats, where she goes, her medicine regimen, rarely changes. So, we adopted a morning rhythm.

 

Most mornings, I wake up first. I look next to me and the only reminder of what once was lies next to me in that solitary moment- still. There are no hints of disease, no signs of change. We lie in the bed as the birds chirp and squirrels patter, just like we have for 19 years. She is sweet, and soft, and peaceful. I resist the urge to start the morning, and instead wait for a few moments to inhale this time. The time that once was.

We rarely started our mornings together for the first 13 years. She was a morning person, bright and jaunty, slamming cabinets, and coffeemakers, and makeup. It was as if she needed me to wake up, to join her, but was too coy to actually ask me to. I mumbled and shrugged into the day while she floated on top of it. Now I wait for her to awaken to begin. I have this fear that if I start waking her up every morning, that she will forget how to sleep. That the nightmares of last year will begin again. So I wait.

There is an urge to go ahead and get started, like I am lazy and the world is passing me by. And yet the calmness of those first few moments sets the tone for the day. Our lives are about patience now. All things take longer. Getting ready, eating, taking medicine, settling in, they all are exponentially more time involved. To wait for the day to begin is to posture myself toward a slower day. However, somehow I have grown to appreciate slower. Attentiveness thrives in slowness. I missed so much of my life when I was living it at top speed. I missed it on two levels- one, living a hurried life means that life hurries past. Second, living a hurried life without the ability to recognize the sacred, the important moments, made it go by even faster. A fast life of banality. Or at the very least, blind to many of the meaningful moments.

I stare for those first few minutes. The memories are real, the what if’s even more.

 

She doesn’t sleep long before her subconscious tells her that I’m staring at her. And her eyes begin to pry open. One at a time, escaping the night, her eyebrows go up and down acting as an alarm clock, long before her eyelids ever unfold. I greet her, “Good morning sunshine sleepy face.” She slips a sleight grin. At this point, the rest of the morning will go smoother if I can get her talking and active. The next several phases of our day need her feeble body to be at its best for it to go well.

So, we play faces. Faces is a game that I made up when communication got harder. Tiff and I used to talk about other couples when we would go to restaurants that simply sat across from each other and never said a word. And this was before cell phones handicapped our civility. Sitting at Dairy Queen every Friday for 90 minutes with nothing to say, or rather, nothing to hear was sad to me at first. So I created faces. When I felt that we needed to communicate some during our chicken finger and fries, followed by a salted caramel truffle blizzard meals, I would ask her to react for me. “Show me what you would look like if someone ran in here, masked, to rob the place.” Shock appeared on her face. After multiple trips in silence, I laughed out loud and couldn’t stop. She smiled and we had found a way to connect again. Sad, glad, embarrassed, something stinks, she gets me with that one every time.

If I can get her playing Faces in the morning, our day goes smoother. It’s another way to warm up her body for the work it will face ahead. It also warms up her verbal. Most people don’t understand her at all, but not even I can understand her words at first wake. Her mouth and tongue and vocal cords need a headstart before she tries to communicate. Faces gets us going. She doesn’t play long before she says, “Bathroom.”

 

Neither of us have ever had strong bladders. Years ago, I quit drinking anything an hour before a movie because I hate having to guess when the most mundane moment of the movie is to miss. I have to moonwalk backwards toward the door to catch the very last second of the movie screen before I sprint to the bathroom. But Tiffanni, she had three children sit on her bladder for nine months each. Those barbells did a number on her. So when she says, “Bathroom”, that means we have seconds. Her eyes widen first and I know what’s coming. No time for stretching, no time for cell phone checking- bathroom. Now.

One of the reasons that we built our new house is to give Tiff the best handicap amenities that we could afford. All of the doorways are three feet wide. The bathroom has plenty of room to turn a wheelchair. There’s a walk-in tub with a long shower head hose. A handicap rail next to the toilet. And my favorite, a bidet. Which by the way, once you go bidet…nevermind. I have the movement from the bed to the bathroom down to a rhythm. How much effort I will need, how much effort she can use that early in the morning. It’s interesting how something so everyday gets so much thought in my new world.

 

From there we make our way to the breakfast table. We’ve experimented with so much over the last several years and finally landed on smoothies. They go down easily and I can mix up almost all of her meds into the banana and peanut butter concoction since she has such difficulty swallowing them. Ten pills is a lot for the morning regimen. Before they got blended in, we would take 30 minutes just to do medicine. I’ve also learned that straws are nearly pointless. It’s two swigs forward and one swig back- so I hold the tumbler and divvy the sips.

“Bible,” she says. I honestly can’t remember whose idea this was. One day early on we started listening to the Bible in the YouVersion app. Every morning we pick up where we left off. Sometimes two chapters, sometimes five. It just depends on how many begats were the day before. I don’t know how many words that she understands. I doubt if she comprehends full swaths of Biblical history interspersed with sacred sayings, but there’s a beauty in her request, “Bible.” She reaches out her heart to a good Father that must meet her where she is. “Suffer the children to come unto me,” he once said. And she does, all of those words.

A few months ago we were finishing Leviticus 18. I’m pretty sure that most Christians don’t realize that chapter is in there. I sat there wondering if Tiff registered anything that the Heston-esque voice was quoting to us. The conspicuous mismatch between the voice and the words. Charlton went on and on with a litany of people, relationships, and animals that we aren’t supposed to sleep with, to which Tiffanni looked over at me, turned her nose up and matter-of-factly said, “Gross”.

That’s one of the reasons that I love the Bible. It doesn’t avoid the earthiness, humanness of where I live. It is not oblivious to the nature of my struggle, nor unaware of the brokenness of our breakfast. There are few put-together people within its pages. The sinners far outpage the saints. Those with doubts, crises of faith, inhibitions, dirty pasts, senseless sins, and prodigal failures line its checkered chapters. In all of its sordid candor in human repugnance, God weaves himself throughout. There are no pages that are too vile, too fractured, too crippled for him to not incarnate. He resides in every story and somehow, in spite of Tiffanni’s diminishing understanding I know that she realizes that He sits at our table too. Intimately accustomed to sharing a meal with the outsider and undeterred by the lack of table manners, He eats and drinks, with us. A sacrament of blended peanut butter and banana.

 

Finally we round out our morning routine with a breathing treatment, lounging on the the couch in front of the Hallmark channel. Addyson was diagnosed with asthma when she was one. The first time that we hooked her up to the nebulizer and I saw her Darth Vadering the medicine, I panicked. Her heart raced so fast that I put her in the bed with us for the night. I kept my hand on her chest and never slept. The entire night. Now I hook Tiffanni up, tubes and mask and meds, and wait on her to finish.

It’s usually during this time that she tries to tell me something. As if communicating isn’t hard enough, now I’m trying to hear her soft-spoken, abbreviated words over a Peterbilt. It’s hard to describe how endearing the vulnerability of needing someone is. When I would see Addy sitting in my lap, hooked up to science, she seemed so helpless and frail. Completely dependent upon me. And now Tiff, fragile, depleted, she lies there waiting for the fumes to do their work and I remove the mask. Not really waiting to do anything else, just waiting because it’s the last part of the routine of the morning. She will spend the next few hours between cat naps, absently staring at Hallmark.

 

It’s funny how doing the same thing over and over, day in and day out, hasn’t made me want to escape. Instead I’ve discovered a grounding and certitude. I have so many questions about why and what for. Even some about when. But for this season, in all of its chaos and uncertainty, this morning routine anchors me to my vow. And the vow to love.

I watched the news, like all of you, as Harvey and Irma pounded the shores of Texas and Florida. Millions evacuated, powerless to nature’s destruction. I have friends in both states that posted pictures and status updates to their situations. Homes and cars destroyed. Hundreds of billions of dollars in damage. Lives lost. And in the wake of what I witnessed with 2005’s Hurricane Katrina through my family, things will never be the same.

I think what most captures my attention is the surprise from the devastation. We’ve seen hurricanes before. Our meteorologists are better at predicting the storm’s path and its likely havoc than ever before. We know where it will hit, what it will destroy, and what it will cost to taxpayers, insurance companies, and individuals before the hurricane ever makes landfall. And yet the surprise, the disbelief, at what has just happened when it actually does should be bewildering, and yet it is. It’s as if no one saw it coming.

Preparing for a storm and living through one are very different. Witnessing a storm through the testimony of friends and actually experiencing it are not the same.

Tiffanni’s mom, Glenda, was two years from her death when I met her. Huntington’s had taken so much and she lived in a full-time nursing home. I saw the end and I know where the trail leads. But it hasn’t prepared me at all for what has happened over the last nine months. Watching a storm and experiencing a storm are like being in the NBA versus playing a pick-up game in the church gym. And I just can’t keep up with all of the changes. I’ve used this forum to process, to update, and to give me a reflective space to find God in the small things. But I can’t keep up.

The last several months have been jarring- whiplash. Trying to adjust to one change, only for it to last a few weeks and then on to a completely different one is hard. For six years we had slow changes. Enough time to adjust to a new normal before something else would interject a revision of our routine. But this year has been a hurricane. Not one that I watched, one that I’ve experienced.

I get asked every day, “How are you doing?” The truth is that I’m not sure right now. My support system is stellar. My children are resilient. Tiffanni is manageable. But there is an undercurrent of grief just below the surface that I’ve been able to keep at arm’s length. It’s there, bubbling, rumbling, but contained. The changes have been too fast to be able to reflect. Not enough time to adjust before the next evolution. With each change is this adrenaline rush of resolve and before it wears off is another change. So, thank you so much for asking. Your kindness and concern at times is overwhelming. But, unfortunately, I don’t know how I’m doing. I just know that my neck is sore.