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.

CF Awareness Month

May is Cystic Fibrosis Awareness Month! If you’ve been around here for any length of time, you know that CF awareness is pretty much always my MO, but this month is made for it!

Throughout the month, I’ll continue to share things about CF here and there (per usual) but what I really want to do is let YOU take over.

If there is anything you’d like to know about CF, particularly regarding my personal experiences, please ask! No question is too big or small, no topic too sensitive.

Are you curious about what life was like with three CF kiddos in our family? Do you wonder how the partner of someone with CF feels (a question for Randy)? Do you want to know more about what CF is or how it affects the body? Do you have questions about pregnancy or parenthood and CF? CF and college? CF and relationships?

I would love to answer these or any other questions you may have! I’m an open book. Please feel free to comment here or send me an email: jenny@lungsnroses.blog

I look forward to chatting with you and doing more of something I am incredibly passionate about — spreading CF awareness!

I am not expendable

In recent weeks, my faith in humanity has been both shattered and rebuilt more times than I can count. I’ve seen people coming together, supporting one another in ways that make my heart sing. But I’ve also witnessed some of the most selfish behavior and disheartening discourse surrounding all things related to COVID-19.

Something that has really stood out to me is the inherent ableism in the way we talk about this pandemic and how we’ve been treating the most vulnerable among us.

There’s something I need to get off my chest in regard to all this, and I really hope my able-bodied friends are listening: I AM NOT EXPENDABLE!

Every time a news anchor prefaces a COVID-19 story by emphasizing that it mostly affects the elderly and immunocompromised, it sends the message that the well-being of vulnerable populations is secondary.

When friends say that this is “only” killing those with underlying health conditions or the elderly, it feels as if my entire existence is reduced to “only.” Something expendable. Nothing worthy of concern.

When considering the very real possibility of having to ration healthcare, and the decision is made to prioritize the young and healthy over the elderly and disabled, once again the message is that certain lives have more value than others.

It’s both saddening and elucidating to see how quickly employers and educators have made accommodations that would have greatly benefited disabled folks in the past— things like increased work-from-home options and distance-learning curriculums.

Throughout all this, the message (whether intentional or not) has been that the lives of disabled people are less valuable. I emphatically reject that!

I have a genetic disease that makes me more vulnerable to the effects of this virus, but that does not mean I am less worthy of accommodations or life-saving care.

My life expectancy may be shorter than that of others, but that does not make my life less valuable. When people debase the worth and value of folks like myself, quite frankly, it makes me mad as hell

Disabled lives have value. Immunocompromised lives have value. Elderly lives have value. We are worthy of concern and respect.

We are not expendable.