A love story (of sorts)

I’ve said it before, and I’ll say it again: I don’t need flowers, poems, or over-the-top gestures. One of the most romantic things Randy does for me is sterilize my nebulizer cups.

But it hasn’t always been that way…

Spending a lifetime dealing with the challenges and unpredictability of CF can make a person (me 🙋‍♀️) long to control whatever tiny thing they can.

The things I can control are related to my healthcare routine. I may not get to determine the outcome or know what bumps lie in the road ahead, but if I do everything within my power in a very specific way, I can face the unknown with a bit more composure.

(Yes, I’ve talked about my control issues in therapy.)

When Randy came into my life and wanted to start helping with things related to my care, I wasn’t sure I wanted him to! It took a long time for me to let him take over certain tasks (even small ones like sterilizing nebs) and it wasn’t an easy thing for me to do.

But in time, I learned that letting go of some of the smaller things is not only okay to do, it’s pretty freaking awesome!

While he and I both know I’m totally capable of doing things on my own, it’s nice to know that I don’t always have to.

He’s got my back.
And my nebs.
And to me, that’s real love.

A little (re)indroduction

It’s the beginning of a new year and there are some new people here, so it seems like an appropriate time to quickly (re)introduce myself.

Hey there. I’m Jenny! I’ve been blogging off and on for the last 12 years. Does that blow your mind as much as it blows mine? Here are a few things about me:

• I have cystic fibrosis, which is what I’m assuming led you here in the first place. I talk about living with CF a lot, but I also share things about motherhood, everyday life, mental health, and other things I’m passionate about. ⁣

• Both my older sisters were born with CF, so I was diagnosed at birth. My oldest sister, Shannan, passed away at the age of 14 while awaiting a double lung transplant. My other sister, Teresa, is 40 years old, has 4 beautiful children, and is doing well.

• Born in San Diego and raised in Utah, I’ve spent my whole life around animals, including: dogs, cats, chickens, goats, rabbits, horses, and a hedgehog at one point. (I can still milk a goat like nobody’s business, FYI.)

• My daughter, Morgan, is the light of my life! I was previously married for 7 years, which I’ve learned is something many of you here didn’t know! ⁣Randy is not Morgan’s biological father, but he completes our family perfectly.

• I met Randy on Tinder and was pretty certain he might try to kill me on our first date. Good news: I ended up falling in love instead of being murdered (whew!) He changed careers and moved away from his home to start a life with us. We’ve been together for 4.5 years, and he’s never tried to kill me. Not even one time! ⁣

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• Some of my favorite things include: coffee, sunsets, yoga, the ocean, mountains, true crime, new bed sheets, taking pictures of everything then going through those pictures to reminisce, making new friends, and writing. ⁣

If you’ve made it this far, congratulations! And sincerely, from my heart, thank you for being here. It means so much that you choose to share your time and life with me, if even in the smallest way.

If you ever have a question, ask! If you want to send a message or email, do it! If you’ve been reading but haven’t commented, I really want to hear from you!

Just for fun, tell me one random thing about yourself! 👇🏻

August 2020 Newsletter: You’ll blow us all away

Dear Morgan,

How does a b***ard, orphan, son of a…

Oh, wait. That’s not right! It’s just that we’ve been watching Hamilton on an endless loop for the last month, so that seems like the appropriate introduction for everything. On any given day, at any given time, you can count on either one of us to blurt out a random Hamilton quote, generally sung at the top of our lungs. Randy doesn’t get it. He just doesn’t understand (yet) that there is rarely a situation in life for which a Hamilton quote is not fitting. Hey, and if you don’t know, now you know.

Right now, as I type this, you’re sitting on the couch directly across from me, brushing your incredibly long, still-very-blonde hair. Your limbs are long, your body no longer that of a little kid. Occasionally you look over at me and smile, and I find myself watching you, completely stunned by your beauty. When you smile, you knock me out, I fall apart. Physical beauty means very little in life and I regularly preach about how it has no real relevance. But between you and me, kid, you’re the most gorgeous human I’ve ever laid eyes on.

You turn 11 today (woohoo!) and as you inch closer and closer to being a teenager, you continue to learn who you are and where you fit in this world. Your self-discovery is fascinating process to watch! Your sense of humor is the best! You love cheesy jokes, and your timing and delivery of them are always spot on. You are artistic and creative. You have the biggest heart of any person I know. You’re developing a unique sense of personal style and recently started wearing makeup (just a little, but it’s enough to freak Randy right out). As your mother, it’s difficult to capture the myriad of emotions I feel as you turn another year older. On one hand, I reminisce about those early years and mourn the swift passage of time. On the other hand, I love seeing you develop a sense of self and I’m inexplicably proud of who you are at this exact moment. Pride is not the word I’m looking for, there is so much more inside me now.

I am confident that this year of life will be forever etched into your memory. For one, we are in the midst of a global pandemic. The ease with which I type those words is almost comical; it doesn’t seem real! Unfortunately, it’s very real and the last several months have been incredibly challenging in many ways. In addition to the pandemic, there have been a variety of social issues that you’ve taken deep interest in. We, as humans, have a tendency to avoid things that make us uncomfortable. We push away what we can never understand. We push away the unimaginable. But you don’t shy away from the difficult or scary conversations. You want to learn about the world beyond your immediate vision, and you want to do whatever you can to make things better.

This spring, we attended a Black Lives Matter march together at your request. Revolution is messy but now is the time to stand! I don’t have the words to describe what it felt like seeing you half-hanging out of the car, proudly holding your handmade sign out the window. I hope that this part of you, the one that recognizes the plight of others and has the courage to take a stand, only continues to grow. You’ve got so much fight within you, and if you channel that drive in the right direction, you’ll be an unstoppable force for good. The plan is to fan this spark into a flame.

There have been at least a million times in your life that I’ve wished time would pause. If there is a silver lining to this pandemic, its that the pace of our lives has slowed significantly. For all the difficulties and trials this year has brought with it, it has also blessed us with the invaluable gift of time together. School was shut down in March, so you finished the year online at home (you weren’t at all sad about missing your May Day Festival, but said that you would have appreciated your last day of elementary school more had you known it’d be your last). We spent the spring and summer crafting, exploring the outdoors around our home, watching movies together (you suddenly love romantic comedies, but documentaries are still our favorite) and spending days at the lake.

I know some parents have struggled with having their children home for this extended period of time, but I truly don’t understand or relate to that. You are quite literally my favorite person in the world to spend time with and having you home has been a dream come true for me (except, of course, for the nightmare taking place around us). I’m convinced that even in the worst of situations, there is always something to be grateful for: oftentimes you’re that thing for me. Times are hard right now, I won’t attempt to dispute that. But when we’re sitting together on a paddle board, in the middle of a beautiful lake, laughing as we eat the snacks we’ve taken out on the water with us, I can’t help but think, “Look around, look around at how lucky we are to be alive right now!”

One of the most significant changes for our family in the last year has been me starting a new medication called Trikafta. Because of this, I’ve been able to be a more active and involved mom. In recent months, for the first time in your life, you’ve seen me run, ride a bike, and swim (not just dip my feet in the water) — things that were previously out of the question for me. Last winter, we went sledding with Tommy’s family and at one point Luke wanted me to sled down the hill with him, so I RAN UP THE HILL to meet him, just like that! I was so surprised and pleased that I did it again and again, with you by my side and Randy cheering from below. We celebrated together that day on the hill, but that night, as I was putting you to bed, I saw that you were crying big, heavy tears. When I asked what was wrong, you assured me that they weren’t sad tears, you were just so happy that I ran up the hill.

You understand that it’s not just one hill or a single bicycle ride, it’s what those things mean on a grander scale. You’ve seen some incredibly difficult things when it comes to my health. You’ve spent more time within the walls of a hospital than a child should ever have to. You understand the ugliness of this disease which means that you also understand how remarkable these improvements are. I imagine death so much it feels more like a memory. But now? Those thoughts are fewer and farther between; they’ve been replaced with thoughts of gratitude, wonderment, and appreciation.

Recently, you rescued two brand new baby birds from imminent death by cat. Against every piece of advice I’ve ever heard about birds, I let you bring them home (admittedly, I fully expected them to die that first night). You researched and learned how to care for them, spent every waking hour thinking of them, and made sure all their needs were met even when it meant waking up every few hours throughout the night. You grew to love those birds so much in the couple weeks they were with us. Eventually, the time came to send them out into the world. You’d done everything you set out to do: you gave them a chance at life.

As we watched the first bird hop out of the nesting box and take flight, my thoughts turned to you, my own little baby bird. It won’t be long before you’ll also be spreading your wings, going out into the world on your own. If we lay a strong enough foundation, we’ll pass it on to you, we’ll give the world to you. I fervently hope that we’ll have given you the best chance possible. I hope you look for adventure and new horizons. I pray that you’ll feed your curiosity. Read. Explore. Try. Fail. Try again. Acquire knowledge and seek wisdom. Be an active participant in creating connection, goodness, and justice. Do not throw away your shot.

And finally, I wanna talk about what I have learned, the hard-won wisdom I have earned. You’ll grow up to realize this world isn’t always a kind place; it is wracked with pain and inequality and heartache, but it’s also chock-full of beauty and laced with opportunity. There will be difficult times, that is one of the few guarantees I can offer. Life doesn’t discriminate between the sinners and the saints, it takes and it takes and it takes. The good news is, you get to choose which paths to take and what to do with the trials you are dealt. I have a feeling that you’ll be able to manage it all rather well. Not only that, but I firmly believe you’re going to change the world… one handmade poster, ridiculous joke, and baby bird at a time.

Someday, someday, yeah you’ll blow us all away.

Happy birthday, sweet girl!
Love, Mama

…and Peggy!
(Just because I knew this one would make you giggle.)

The way I see it…

“We just see things differently,” is something I’ve heard a lot recently. And I suppose that’s true.
Where some see oppression, I see an accessibility tool. I am able to navigate the world more safely when both myself and others are wearing masks.

Where some see a violation of rights, I see concern and kindness for others. A person’s willingness to wear a mask for the protection of the people around them is, to me, an incredible act of love.

Where some see “fake science” and biased information, I see sound evidence coupled with years of personal experience. I’ve worn masks for decades (with lung function as low as 27%) without ever experiencing complications. My team of care providers and dear friends in healthcare have safely and effectively worn masks throughout their careers, sometimes for the duration of entire shifts or lengthy surgeries. (Spoiler alert: they’re all fine.)

Where some see “sheep” blindly complying and following sinister orders, I see community, love, unity, and a combined effort to care for one another and combat our common enemy.

If the way I see things turns out to be wrong, I will have unnecessarily worn a mask for a few months. No biggie. But if the way I perceive things is correct, and people have refused to take precautions, we’ll experience a tremendous amount of preventable loss and heartache.

I’ll wear the dang mask. This is something I’m willing to be wrong about.

Trikafta update

Today marks six months (180 days) on Trikafta for me! 🎉

Quick explanation for those unfamiliar with Trikafta: it’s the newest of four drugs called CFTR modulators. These medications are specific to cystic fibrosis and help correct the underlying defect in our cells rather than just treating symptoms.

I started Trikafta in November, near the end of a 2 week hospital stay. For some people, within hours of taking their first dose they noticed changes in their breathing or how their body was feeling.

I was NOT one of those people.

The changes I experienced were slower and more subtle. I began feeling like I was disappointing people when they’d ask how I was feeling because I didn’t have much to report.

My biggest “wow” moment happened when, after two months on T, I was sledding with my extended family and ran up a hill without thinking twice about it. I don’t run ever run, but especially not uphill! When I realized what I’d just done, I did it again and again.

Now, six months into this journey, I still can’t tell you when certain things happened since it’s been so gradual, but I can tell you that my body has indeed transformed.

For one, I don’t cough anymore. It’s the most bizarre thing! Something that has been so normal my entire life is now just gone!

I saw a roughly 8% increase in lung function, giving me my highest PFTs since 2014.

I rarely cough up any mucus. My treatment needs haven’t changed – I’m still doing just as many as I was previously, but I’m not getting a mouthful of mucus each time I cough. (CF is so glamorous, isn’t it?)

My digestion has changed significantly, and I’ve gone from needing to take 5 enzymes with meals to 2.

I’m not sure many people understand how painful CF can be on a daily basis. Lungs, joints, stomach, sinuses, overworked muscles — something is always hurting. But I now have more pain free days than I’ve had in years.

This isn’t even a complete list of the changes I’ve experienced, just the most significant ones. Most days, I still have a hard time wrapping my head around it all to be honest.

Every single day, I am amazed.
Every single day, I remain hopeful.
Every single day, I am grateful.