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

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

Warning: I’m going to be honest with you (and this is for all the future readers of this blog who just found out they have lung disease and basically want to punch a hole in the wall)…

Some days just suck.

There are discouragements. There are set backs. And there is a constant struggle between the life you have and the life you thought you should have.

It’s been a rainy, gloomy week and, for some reason, I’m in a mood…so I apologize for catching anyone off guard here. I can hear my husband saying, “Maybe you shouldn’t be writing right now.” Writing when you’re ‘in a mood’ is like grocery shopping when your hungry. Not a good idea.  But you know what, this is real life. My grandpa used to say, “Do the best you can, that’s bad enough.” Oh Albert, what a way with words.

If there’s one thing I’ve had to come to terms with having this disease, it’s that, control is an illusion.  For someone like me who is a little/big bit of a control freak when it comes to life in general, this is a really REALLY hard concept. We all have expectations that we put on ourselves or that we allow others to place on us and sometimes, we fall short. Or rather, life falls short.

You have a rare lung disease. You will not be able to have children. The medications aren’t helping. The numbers aren’t very good. Lung transplants are merely a trade of diseases. The recovery is unique and unknown. You should probably relocate. Move to the most expensive city in the country. Maybe you should look at this center or that center. You have a rare blood type (b+). You need to get going on this. Hurry up and wait!

Hearing this stuff gets old and sometimes all I want is a vacation from my body.

Truth is:

Some days you’re going to be sad.

Some days you’re going to cry.

Some days you’re going to be angry and you might even take it out on your family, your cute husband or your cat.

No amount of chocolate soothes.

No amount of sunny days distract.

No amount of hot baths, warm fuzzy socks or Netflix Documentaries make it go away

Brene Brown, researcher and vulnerability expert said it best:

“From the time I was a young child through my late thirties, I believed that growing up was about finding certainty and solving the mysteries of life. It seemed to me that the end game was answers and control – especially control over important outcomes and what people think. The formula was pretty clear: Vulnerability is weakness, self worth is based on what you achieve, and accomplishments and acquisitions bring joy and meaning.

“What’s spectacular about my life today, at forty-seven, is finally realizing that the prime of our lives is not about answers – it starts when we finally allow ourselves to soften into the mysteries and live in the questions. For me, the softening came after a long, painful midlife unraveling; fueled by the exhaustion that comes from too much pretending, pleasing, and perfecting.”

In life, you’re going to read a lot of numbers that scare you. People are going to tell you no. You’re heart is going to hurt. You’re going think to yourself, “How am I going to survive this?” Am I going to be ok? What if this and what if that? Why me? There are going to be a hundred reasons why you think you should give up.

And the answer I keep being directed to is…Faith. Faith isn’t having all the answers. It’s believing. It’s hoping. It’s writing your own story. It’s getting out of bed…most days. It’s falling and then picking yourself up again. It’s praying even when you don’t feel like it. It’s learning to forgive yourself and start again. It’s filled with blood, sweat, tears, and fight. It’s surrendering to your unique journey. It’s messy and it’s beautiful and it’s yours for the taking.

And it’s ok. It’s ok not to be ok.

Soften into the mysteries. Live in the questions.

 

No one likes asking for money…so, can I have some money? (if you want)