Henry getting ready for work wakes me up. Every morning. I love it. I slowly come to, as I watch him go in and out of the room, brushing his teeth, tucking his shirt in. It’s the hardest part of the day because I hate saying goodbye to him. If it were up to me, we’d stay in bed all day, watching our respective Netlix shows on our respective ipads. Gabbing about current events and foods we want to eat. True love.
He kisses me goodbye, holds my hand, then slowly slides it away as he exits the room. And I’m left alone. The sound of my Airvo humidifier buzzes softly in my ear.
I sit up and pause for a moment to let the fluids in my lungs settle. It’s usually hard to get out of bed but today isn’t so bad. I slide my legs over the edge of the bed and stand up, gravity feels heavy on my chest.
I never know what to expect each day. If I’ll feel worse or better or even the same.
I reconnect my tubes from my sleeping machine to the long oxygen cord running from my concentrator downstairs. It’s 50ft long and allows me to navigate the house fairly independently. The air switches from warm to cold inside my nose. It’s a little abrupt, a little uncomfortable. “Time to get moving,” I think to myself. Pills. Then breakfast.
Frosted Flakes. Almond Milk. So good. So so good. Simple pleasures. I curse at the tubes as they get wrapped around a chair and yank off my face. It’s crazy how you can feel so much disdain for something that you’re so grateful for at the same time.
This is the time of day that Henry’s at work. Is that bad? That my days are divided into the sections that I’m with Henry and the sections that I’m not? That’s healthy right?
I usually try to “get ready” for the day. Some days this means getting dolled up. Some days this means putting on pants. Today is a putting on pants day. Putting on my t-shirt is a daily event. I remove the tubes from my face and swing the shirt over my head in one fail swoop, gathering my tubes and throwing them back into place with the seconds that remain. Every move calculated. No energy waisted. I feel a small burn in my chest, reminding me again just how fragile I am.
I sit on the lid of the toilet while my sister Kaylie braids my hair. So talented. You’d think in 29 years I’d learn how to french braid. I’m glad she knows how. The sound of the piano permeates the otherwise quiet house. It’s a sound I grew up with; the sound of my mother’s laugh and vocal exercises, a familiar sound. It’s home.
Computer. Writing. Facebook. Instagram. Emails. Doctors. Planning. Laundry. No day is the same, yet nothing’s very different.
I feel tired. What have I done today??? My head hits the pillow, hard. It doesn’t take long for me to fall asleep. I’ve learned to surrender to my body. She wants what she wants when she wants it. She wants naps a lot lately. She’s feeling tired.
My phone rings, startling me awake. It’s my brother, Carter. “Hey Kenz, want anything from Sodalicious? I’m picking up a drink, just calling to see if you want one too.” He’s so thoughtful. 17 and already cooler than everyone I know. How’d that happen?
My Henry walks in the door (I’ve learned the sound his footsteps make) and follows my cords to wherever it is I’ve gotten myself stuck. I plan my day around the stairs in the house. Sometimes, I won’t go downstairs at all because the thought of climbing back up is almost as exhausting as the act.
He kisses my face. I feel that familiar burn in my chest, but this one glows and heals. He asks me how my day went. I try not to complain. I try to tell him how “productive” I was. I’m not a very good liar.
Dinner. Sometimes we make it (Best for experimental recipes that I’ve discovered on Pinterest that day). Sometimes we buy it (we’re single-handedly keeping Dominos in business). Sometimes my angel visiting teachers silently slip a beautiful homemade meal onto the counter. (I’ve told them that I secretly hope I stay sick so they’ll keep cooking for me. I know, those are inside thoughts). Chicken Enchiladas. So good. So so good. I inhale 5.
Henry turns up my concentrator and waits at the base of the stairs as I climb them to bed. He waits a few minutes then turns it back down again to my normal flow. I refill the water in my sleep machine as I strip myself and crawl into bed. Warm, humid air returns to my nose, a welcomed nightly comfort.
Henry crawls in beside me. I tangle my feet with his and count the freckles on his cheeks. His skin, so warm and soft. He has such beautiful hands. He wraps them around mine and then…we pray. Not every night as we should. But tonight we pray. We pray in gratitude and humility for all those who have shown us unmeasurable kindness. We ask for faith, and patience, and health. We thank the Lord for every day, our families, our marriage, our love, and the gospel. And we thank Him for His love and His wisdom and His son.
“I love you, Henry.”
“Love you Kenz.”
Henry flicks the switch of the lamp by our bed. The room is dark. A cool breeze enters from the window.