The Summer of 2008 was the best Summer of my life.

It was spent at the base of the beautiful Teton Valley, the green Idaho countryside kissing the famous Rocky Mountain landscape. It was a setting dedicated for spiritual growth and learning, a setting that provided for me the backdrop for which I would forge some of my most treasured friendships.

We were a group of kids, from all different walks of life, with our own unique stories to tell and experiences to contribute. We would later come to find that we each had been “lead” there, by one way or another. We spent the Summer as counselors to countless youth through a program called “OYA” or “Outdoor Youth Adventure,” facilitating various outdoor programs and teaching about the gospel.

It was magical, an experience that will forever be frozen in time for me.

We had one of our many reunions this last Sunday.  My dear friends traveled near and far to wish me well on my journey to Northern California. It was the first time in a long time that so many of us were able to come, two years shy of our 10-year reunion (which we need to start planning!)

The photo below is missing a few faces (all here in spirit), and we’ve added a few others (cute husbands, wives and babies). But the feeling is the same. We’re family. We’re here for each other, through thick and thin. We will always be friends. And we will always be Badgers.

Throwback:

KRD999 clear

8:00 AM

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.

9:30 AM

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.

10:00 AM

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?

11:00 AM

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.

12:00 PM

Computer. Writing. Facebook. Instagram. Emails. Doctors. Planning. Laundry. No day is the same, yet nothing’s very different.

2:00 PM

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.

4:00 PM

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?

6:00 PM

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.

7:00 PM

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.

9:00 PM

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.

Amen.

“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.

My awesome friend Kaitlyn is helping us out by hosting a silent auction! We’re reaching out to all artists, makers, instructors, gurus, chefs, and dog-walkers who have either an item(s) or service that they’d be willing to donate to the effort.

The auction will be taking place on instagram @bravelittlelungsauction on July 15, 16, & 17 and 100% of the proceeds will be going toward my lung transplant and recovery.

If you’re interested or know someone who may be able to contribute, CLICK HERE to register. For any and all questions, you can also contact Kaitlyn Tanner at wadsywoo@gmail.com

Thank you all for the continuing love and support you give, we love you all!

TEASER ALERT – Below is a list of items Henry and I will be submitting to the silent auction:

My dad’s bronzed baby shoe (not a pair…just the one)

Starting Bid: $5MM

3 Solid Hours of Henry’s Unsolicited Opinion On Anything

Starting Bid: A Sturdy Set of Earplugs

550 ft of used oxygen tubing

Starting Bid: In-Network Health Insurance

One Year Supply of Tacos

Starting Bid: A Gallon of Pepto Bismol

A Guided Hike through the Adirondacks (with this stock photo man who majored in women’s studies at Berkeley and reunited with his birth mother at this year’s Coachella)

Starting Bid: Pepper Spray

A Chicken

Starting Bid: One Chicken

Mackenzie’s Terrifying Troll Collection

Starting Bid: A Priest

A 3 Hour Puppy Massage

Starting Bid: One Bitter Dog Who Just Needs to Get Away From It All

Full Ownership of Blue Ivy Carter’s Instagram Account

Starting Bid: One Loyal Husband #Lemonade

Two Life Coach Sessions with Richard Simmons

Starting Bid: Good Luck Out-bidding Mackenzie

Click Below to Register an Item or Service

I start by turning on the water, sliding the handle until it points at 2 o’clock. The water gets hot fast considering the size of the home and the distance the water needs to travel from the heater to the faucet. But your tolerance for heat is less than mine, so I need to find the right temperature balance before the tub fills too much. Otherwise you won’t get in. You’re a purest when it comes to tubs; no bubbles, no salts, no oils – nothing to distract or distort the contact between you and warm surrender.

By the time you’ve washed and rinsed your face, the tub is as full as it’ll allow and you slide the handle back down to 6 o’clock and the water stops. I turn the fan off – nothing to distract or distort the sound between my lips and your ears, your lips and my ears. The talk is light and lazy and neither of us is concerned about any topic or response or specific consequence. We just talk, eye to eye.

You take out your air tubes, drape them around the faucet and slowly adjust yourself backward until you’re on your back and your head goes under the water, seeping into your hair and pores. I’ll admit, it’s unnerving seeing you without your oxygen, even in this context. You keep your eyes closed, as if to now exist in another place, another circumstance. Depending on the day and how comfortable you are to be away from your tubes, you’ll take a second or even a third dunk. Down, pause, up. Down, pause, up. When you’re done dipping your head under, I help you sit up in the tub and will usually squeeze the excess water from the ends of your hair until I swing my legs into the water, setting myself on the tub’s white, porcelain edge.

I’ve learned how much shampoo your hair needs to work up a healthy lather; about two quarter-sized dollops. The suds come easy, working up and out until the shampoo has stiffened its way between every strand. And then my favorite part. I use the movie theater cup – the one I got when I saw Batman vs. Superman while you were at women’s conference – to rinse out the shampoo. The water falls in thick ribbons from the cup and onto your head, sending the white foam down your back, into the clear water. It only takes a few cup-fulls. The conditioner, on the other hand. That’s a six or seven cup job – your hair almost getting darker with each rinse, the water getting milkier. Fill the cup, rinse. Fill the cup, rinse. Fill the cup, rinse.

You have the rest of your routine to follow while I sit and hand you your air at all the learned points. There isn’t much by way of talking at this point. You’re without oxygen most of this time and it’s all you can do to keep your head up. So I wait. And when you’re ready, I’m on standby with the towel which I first hand to you so you can dry your eyes and nose and ears and then plant your oxygen back on your face in preparation for the task of standing and stepping out of the tub. We’ve learned to wrap two towels around you and then have me hug you with both arms and a leg until most of the water is blotted from your skin. I grip the ends of your hair with the towel and draw what loose water lingers, leaving you clean and dry and warm.

And there she is. There’s the woman who had me from the start; who smiles from her toes every time we do this, who stops and, no matter how long it takes, sinks her head into my chest and thanks me until she knows I hear and feel her sincerity. The warm water washes away the tube lines on your cheeks, the crimp left in your hair from the humidifier mask you wear at night, the hours you spend researching housing prices and treatment costs and gluten-free recipes and transplant survival statistics even though we promised we’d stop doing that. It washes away the torture silence can sometimes be.

And here we are. In this wet dance of give and share and pour and smooth, we’re washed and renewed – the lines between our differences melting, our reasons for fighting sinking to the tub floor. The way I drove home in silence when I was too embarrassed by the things I said to look you in the eye; the things I said I’d do but didn’t, the things I said I’d never do but did, the way I didn’t care enough or apologize enough or whatever else enough. The tempered ambition. The dreams on hold. The fear of not knowing. The reality of limited control. The weight of a thousand yesterdays and the complication they bring. The weight of the next thousand tomorrows and the mystery they bring.

The names, the dates, the facts, the anger, the triumph – it’s all there and, at the same time, it’s all washed away. And there’s just us.

Me, keeping you safe. You, keeping me wild.

For those of you just joining us, we are Henry and Mackenzie here at bravelittlelungs. We met, fell in love, got married and in 2015 were introduced to our greatest challenge yet:  I was diagnosed with a terminal lung disease. Together with love, laughter, and no shortage of tacos, we combat the ups and downs of post-marriage weight gain..oh, and lung disease.

We decided to combine our respective blogs into a one-stop shop. Henry’s blog, dearmackenzie.com is now here at bravelittlelungs.com!  We wanted to make it easy for all of you to follow along and stay up to date with all the craziness ahead. We will be posting every day, so follow us and stay tuned!

We’ll leave you a little video to start your Monday off right. It’s our favorite to sing along to (I’m Babs, Henry is Judy). And we can always tell I’m having a good lung day when I can belt the last few lines in the video. “Happy days…are…here…aaaAAAGAIN!”

https://youtu.be/jYpcFHtxm60