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.

The kids started back to school last week. We have an eighth, a seventh, and a fourth grader. That’s recent enough that I remember vivid details about each of those grades for myself. About ten years ago, someone told me that my fourth grade teacher died. I was so sad. I assume that she was older, but I have her frozen in my memory as a great, young teacher. But then, three days ago, I found out that wasn’t even true. She was fighting for her life. I don’t even know how to respond to this because I already mourned her loss- how do you grieve something that you’ve already grieved?

I heard someone say recently, “The years are short and the days are long.” Boy, is that the truth. The years of my kids being home are flying by. In theory, Addyson could leave home in less than five years, however, I’ve already concocted a plan for the kids to stay home awhile longer. Every passing year weighs on me. Did we take advantage of each moment? Did I make enough ballgames? Did I go to enough school things? Did I take advantage of every teaching moment? Should we have read more, applied ourselves more, vacationed more, laughed more, cried more? Did we eat together enough, play board games enough? Did we watch too much tv? Did I take too much time to myself?

For whatever reason, over the last several years, the end of the summer has marked a transition. It is where I reflect over the year, regret some things, celebrate some things, and evaluate Tiffanni’s progression. This year was especially transitionary. It was an amazing year of trips and conversations, sports and retreats, school moments and relationships. It was also the most difficult year of the disease. Tiffanni was her worst and the kids were more aware than ever. I suppose that only continues. I sat with both girls more than once and cried about what they were missing because of her absence. Grieving a loss is hard. Grieving everyday, constantly reminded, newly noticed losses is brutal. And this summer was no different.

Out of all of the things that we did this summer, the one that sits with me, the one that I want to remember forever, the one that I have to write so that it’s never lost is this:
Right after my sister had her baby, my parents were gone for a few weeks doing what good parents do. We were home feasting on what mom had pre-prepared in the refrigerator with some supplemental frozen gourmet. In a moment of creativity, I decided that I wanted the kids to each cook a meal. They could plan the whole thing and executive chef the evening. Appetizer, entrée, and dessert. Their siblings had to sous chef with no complaints or suggestions. Just cut the onion and be quiet.

Each of the kids was ecstatic. Cooking is in their blood. From my mom and grandparents, to Tiffanni and her mom, they get it honest. They went all out. Each trying to top the next, but not so much to outdo the other, just trying to be noticed. Food and meals are important here, so each wanted to offer their contribution to the value. We had so much fun in the kitchen, both creating the meal, which is easily as important as eating, and in celebrating it around the table.

I was so pleased with each of the evenings. Addyson and Brayden each cooked one of my mom’s recipes. Carsyn found an old church cookbook and looked up my favorite meal that Tiffanni regularly made- Chicken Enchilada Casserole. A submission by Glenda Ann Cox. We shopped, prepared, ate, laughed, cleaned, and celebrated life. All while the ever-shrinking summer swirled by.

Here’s to another over-too-quick summer. Another year of movement, growth, and progression- some good, some bad. Another year of laughter and crying, celebrating and grieving. Somehow grieving what we’ve already grieved. Another year of family. Another year of life. Another year of loss. Another year of love.

***

Last year, I wrote a song called Summer’s End and recorded it on my platinum selling album. It captures some of the thoughts that only music can. I hope that you enjoy it.

I have a love/hate relationship with medicine. Tiffanni takes six different medications every day, four times per day. A different combination to balance her mood, movement, cognition, and motor skills. We know what each of the pills do individually, but what happens when you combine this particular concoction? The body is a brilliant machine and on its average to best days, has the ability to regulate itself. Tiffanni’s body has a hard time doing just that, but it’s not completely unable. So, we cram pills into her hoping to balance its inadequacies, and then manage the side effects of the first pills that she took.

A few months after her diagnosis nearly six years ago, I went to see a therapist.

“I just don’t have strong feelings anymore,” I told her. “I used to get very excited about things, I would feel the giddiness of new exploits, excitement before a trip, I had more ‘night before Christmas’ moments. I suppose the good news is that I don’t feel really low either. The pendulum of my emotions barely swings at all. Like sitting on a swingset and allowing the wind to give a push.”

We talked once a month for several months when she told me that I was depressed. I managed my mood fairly well on my own, nevertheless, depressed. She asked me if I would like to see the “Doctor”.

“It’s probably time for you to sit with the psychiatrist if you’re comfortable with that.”

Pensive, I responded, “My understanding of depression and medicine is this: when we go through trauma or grief, our bodies respond for survival. My body believes that if I were to feel all of the feelings that come with what I’m going through, it would be overwhelming. So, it has shut itself down in order to survive and make it through each day. When it believes that I can handle the situation, it will correct itself.”

She agreed so I told her that I wanted my body to do what it does, to which she gave a final warning. “I’m not a pill pusher and I only want you to do what you feel comfortable with. While the body is brilliant, it also forms patterns and habits. If you wait too long to correct it, it will have formed a new normal of not producing the hormones at the level it is supposed to. This is when you have to take corrective measures.”

I left with a feeling of hope that my body was doing what it was supposed to do, but also a feeling of concern. I didn’t know how long I was supposed to wait until I did something- there was this arbitrary date floating around that felt like a point of no return. I wanted to feel again, but I didn’t want to feel everything. I wanted to be excited, and happy, and awe-inspired, and creative, and even sad- but I didn’t just want to be very sad. For a couple of years, I carried this weight of a muted life, a life in black and white watching people live in technicolor. Lumbering through Pleasantville desperately longing to see red.

For four years Tiffanni’s disease (have you ever noticed the word disease? Dis-ease. Something that destroys ease) was regulated by medicine. Her body never cooperated, but her mood and cognition saw little instability. She was bright, thoughtful, had a great memory, hopeful, and seemed to be optimistic. Outside of the challenges of her body, we lived a manageable life. But something happened last year. The medicine didn’t change, but everything else did. Everything.

Tiffanni began to have delusions, hallucinations, and fixations. There were people in our house trying to kidnap our kids. Beehives in the corner of the bedroom. Bugs crawling all over her. People were trying to hurt her. Others, plotting against her. And the fixations were undeterred, sometimes hysterical. She needed her nails done, hair cut, a mammogram, to go to Olive Garden- you name it and it was unceasing.

With that we began a new search for management. The current medicine didn’t match the symptoms anymore. And this wasn’t an easy fix. She has had one to two medicine changes every month for nearly a year. Nothing worked, nothing penetrated those OCD like preoccupations.

Sometime last year, I decided that enough was enough. I needed to feel again. My body had protected me long enough and had probably formed some habits that were keeping my emotions from cooperating. I went to see a doctor. Just a Family Practitioner, not a psychiatrist. I thought that he would make conservative changes that would ease me into feeling again. He prescribed some anti-depressant that I can’t remember. I used it consistently for two months when I determined that nothing changed. It wasn’t working for me.

I went back to see the doctor and he told me, “In your case, there is only one other medicine that I would feel comfortable prescribing. Your particular circumstances necessitate a very specific drug, so we’ll try this new one. If it doesn’t work, then I just believe that God has determined that this burden is for you to carry.”

Theology aside, that’s a lot of pressure. “If this little pill doesn’t work, you are doomed to haunt the doldrums forever.” Theology not-aside, I just flat out disagree with that characterization of God. Which reminds me of how often we create God into an image that is manageable, understandable, and controllable. But that’s another post.

I took the pill for several months. I never saw a change, a discernible difference in my energy, my mood, or my emotions. Either my body put up a stronger fight, the medicine didn’t work, or this is my burden to carry- surely there are other options…

Tiffanni’s body refused to respond to any of the medicine changes the doctor prescribed. I spoke with the nurse weekly, each time exasperated by the ineffectiveness of modern science. She would relay my descriptions back to the doctors who would readjust and tell me to check back in within 1-2 weeks. Every time, Tiffanni would have an initial good day, even two, and then back to chaos. We didn’t sleep, barely functioning, slogging through each day just to start over again.

It’s hard to describe the guilt of going to bed every night feeling like my kids were parentless that day. The balance between caretaking, parenting, working, and personally staying healthy was impossible. It’s like trying to keep four plates spinning that are in different counties- I couldn’t get to them all.

I could tell that I was emotionally exhausted because I would catch myself having imaginary conversations in the shower. Exploding into a heap of anger, berating someone or something with illogical indignation. That was a better alternative than actualizing those conversations. On my best days, I would levee the frustration long enough to complete my responsibilities only to hide the rest of the day. That is until the chaos began again.

Once a month I would say to the nurse, “Isn’t there something that can just sedate her, make her sleep or tired, just to get through the most difficult moments?” The truth is that I wanted a tranquilizer. I wanted a break, needed a break. The whole family did. We all knew what was happening and tried to keep it together. The kids would fight and argue with each other without the self-awareness to understand that what they were at odds over had nothing to do with what they were fighting about. And of course it wasn’t just the kids.

Finally, three weeks ago, the doctor obliged my request and prescribed more medicine than Tiffanni could handle. She was over-medicated. Nearly a year of lost memories. In an attempt to endure, my brain eschewed some basic functions and just survived. Sometimes survival is underrated.

For the last few weeks we have had no episodes of incoherence. Excitement is down, sleep is up. But Tiffanni is just there. A spot or two of life if you know what to look for and she squeezes out a smile with her eyes every once in awhile. She is permanently in a wheelchair and needs 24-hour care. But the kids are calm, fun, and acting like kids.

About a month ago I started feeling again. I think. Or maybe it was always there. A sense of time is a distant relative at this point. Tears and laughter came easy. It wasn’t an onslaught of dammed up emotions bombarding my brain. It was more an awareness of subtle moments. Instead of this moment sad and this moment glad, there were some gradation in events. A change in hue. It wasn’t just Red, yellow, and blue- I felt green, purple, and orange. I might have even caught a periwinkle. I sensed more than the binary of happiness and sadness- but longing, surprise, interest, loneliness, anger, and awe.

The problem is that the renewal of my emotions have coincided with the most weak and incoherent moment of this disease. It’s as if she has transferred her feelings to me. Loss and grief and pain and hopelessness and reality and lost time and loneliness and anger weigh a lot. I wake up some mornings before my consciousness awakens. Light and optimistic, only to be snatched back into reality. That’s an emotional whiplash.

There were things that I was cognitively aware of before, but now I feel them too. I have felt a lot lately and I’m not so sure that I want to right now. I suppose my body has this under control. There are positives and negatives to feeling and un-feeling and I don’t think there is a third way. You either feel or you don’t. I’ve lived a long time un-feeling and gotten used to it. I think that I’m ready to explore more of these emotions, avoiding none. Because I’m not sure that I can heal without experiencing them all, feeling the feels, headlong into all of my humanity. Or at least as much as I’m ready for this season. Welcome back pleasure and longing and loneliness and focus and bliss and worry and misery and peace and empathy and hope- it’s been awhile.

***

“I’ve seen fire and I’ve seen rain.
I’ve seen sunny days that I thought would never end.
I’ve seen lonely times when I could not find a friend,
But I always thought that I’d see you again.” – JT

It has been a month since I’ve written here. Which felt odd because I wrote for 14 months consistently and never missed a week. I wouldn’t call the last month a season of writer’s block, but rather life block. The last month of my life, my family’s life has been the most difficult that I can remember. And maybe I am a prisoner of the moment, always (see) using superlatives to describe the current season, which has its positives. Living in the moment matters. Except when that moment is difficult. Then perspective matters which eludes me of late.

Perspective is the ability to take a step back and reevaluate the current situation in light of the past or even in light of someone else’s dire situation that eventually changed. Perspective introduced “This too shall pass” into our vernacular. She penned the silly, bathroom poem Footprints in the Sand and started the whole self-help movement. You’re welcome Steven Covey and Tony Robbins. And while I understand the point of getting a fresh set of eyes, or backing up and getting a bird’s eye view, or even the spiritual cast all my cares on Him, I just don’t know how to today.

Yes, I’ve tried everything. I take care of myself with exercise and vitamins. My schedule is not too busy and I have others bearing some of the load. If prayer was going to work in this season, it would have. There’s been plenty. And it’s not like there’s a magic amount anyway. If God was into formulas and equations to enact His desires based on our effort, then we would usurp His position at first chance. But that’s not how the real world works, contrary to the television preachers. In fact, that’s not what the Psalms look like at all. Thank God for them or I really would be completely lost.

So, I decided to sit down and write anyway. I connect with you here and have committed to not pretending. Also, when I am in a tough season, I notice that my memory wanes. But I can’t forget these moments, as hard as they are, they matter too. This is me checking in. This is me remembering. This is me documenting all of the moments of my life- not just the Facebook and Instagram moments.

Don’t get me wrong, happiness and joy and laughter and friendships are close. They aren’t fake or forced, they might be more intentional (which could be a good thing), but I have plenty to be happy and laugh about. What’s odd is that they spin simultaneously with my other emotions. Orbiting the paradox of my life that might not be a paradox at all, but maybe just life. I have found that there aren’t really any moments of undiluted, singular emotion. It’s a mixed bag of happy and sad, frustration and contentment. And that’s what life is.