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.