“This means so much to me,” I said to the sweet nurse administering my first dose of the COVID-19 vaccine back in January.
“Living through this pandemic as a high risk person has been… a bit stressful.” I chose my words carefully, not wanting to regurgitate my many personal frustrations onto her unsuspecting lap.
What I didn’t say was:
This has been so scary.
I absolutely hate the way we’ve been treating each other throughout this pandemic.
I’ve been shocked at the ease with which so many were willing to sacrifice the safety of the vulnerable for their own comfort and convenience.
I’ve been enraged by the politicization of medicine and science and human lives.
I’ve been saddened by the way this last year has forever changed some of my relationships.
I’ve been enraged and heartbroken by the massive amount of preventable loss we’ve experienced.
Those were the things I didn’t say, but as we talked a bit more, it became evident that I didn’t need to. She understood and shared some of her own frustrations and experiences with me.
For a moment, right before she gave me the injection, we looked each other in the eyes and smiled behind our masks (you don’t even need to see faces to feel genuine smiles; the eyes are always a tell).
“Well, maybe now you can take a breath, honey,” she said warmly.
• • • • • •
I was lying awake in bed last night and this conversation came flooding back into my mind.
When I hear or read people talking negatively about these vaccines or still debating the necessity of taking precautions (which, let’s face it, happens on the regular) I just remember this conversation and the peace it brought me. Her kindness and the moment of connection we shared made an exciting experience even more memorable.❤️
“Cystic fibrosis is a fatal genetic disease.” I was in a 9th grade Biology class when that phrase jumped out at me from the pages of my textbook. “Many individuals with cystic fibrosis die before reaching the age of 20.”
“Hey,” my friend loudly said from two desks behind me, “Isn’t that what you have? Are you, like, gonna die soon?” Awesome. Just the conversation every young teen hopes to have in class. [Insert: heavy sarcasm]
The phrase “life expectancy” has hovered over me like a dark cloud for much of my life. I don’t recall the first time I heard the specific words or began to truly understand their meaning, but I’ve felt the weight of them for as long as I can remember. After losing a sister to CF when I was just 6 years old, I began to realize what that could mean for me one day. I have never been blind to the ugliness of this disease, but carrying that knowledge in my heart and mind is a bit different than being confronted by it out loud in a classroom full of my peers.
“Yeah, that’s what I have,” I said, probably a bit awkwardly. “But I don’t plan on going anywhere anytime soon.” This was not the last time I’d be asked about my life expectancy. In fact, after years of practice, it’s something I’ve become quite comfortable discussing. Only now, my thoughts about it have begun to change.
Growing up, I couldn’t picture life very far into the future. I never imagined myself growing old. I’d envision things like high school graduation, sometimes even marriage and motherhood, but after that… it was blank. I literally could not picture myself at any advanced stage of life. Mind you, I was always hopeful, but there was a distinct blank space whenever I tried imagining the distant future.
Because of this and the uncertainly of CF in general, it’s always been difficult for me to make long-term plans. Instead of planning things out, from quite a young age I chose to focus on the day-to-day, to pour my heart and soul into whatever I was doing, and to hope that I’d be able to navigate whatever obstacles I might encounter along the way.
Life is uncertain and tomorrow is guaranteed to no one, but knowing that my life expectancy is significantly less than average has taught me to approach life with my heart and eyes wide open, appreciating everything. I believe that being well-acquainted with hardship and learning to accept mortality gives a person the unique opportunity to be bursting with life. As a fellow fighter said, when it comes to CF “no love is half-given, no day is not lived to its fullest and nothing is ever taken for granted.” If anything, isn’t the possibility of a short life even more reason to seize the moment, to find and pursue the things you’re passionate about, to really live?
I imagine all it takes is a simple Google search or a quick conversation about CF for the parents of a newly diagnosed baby to learn about their child’s life expectancy. As a mother myself, I’m sure that is an absolutely heartbreaking and terrifying experience. Seeing that number feels a lot like being hit in the stomach with a ton of bricks. While that pain is valid, it’s important to remember that there are so many things NOT captured within that simple statistic.
Life expectancy cannot measure the worth of a person’s lived experience. It can’t capture the complexity or beauty of the relationships we create. It’s impossible to quantify the lasting impact a person can have on the people around them. Life expectancy can’t count memories made, or gauge the amount of love shared, or put a numerical value on the quality of a person’s life, no matter how brief it may be. Life expectancy is an ever changing, indeterminate number. It holds meaning, yes, but there are so many things that carry more weight and significance in life.
When I was born, my life expectancy was in the low 20s. By the time I had reached that age, the projected numbers had increased into the 30s. Currently, life expectancy for people with CF is higher than ever and increasing each year thanks to fundraising, research, and development of new drugs and treatments. CFTR modulators in particular are changing the face of this disease and the future for many of us is bright. My life is transforming before my very eyes in ways I had never dreamed of.
Recently, I was talking with Morgan about her future: college, travel and hopefully one day, children of her own. As we were discussing this, I could vividly picture her in a hospital bed, exhausted, but lovingly cradling a warm, wrinkly new babe on her chest. In that moment, there I was – a proud grandmother — standing near the bed smiling. And then it hit me…
I could actually see myself there, grey hair and wrinkles included. More than just hoping for that future, I was finally seeing it for the first time.
Maybe that doesn’t seem like much to some, but for me, it’s a huge step. Carrying the emotional weight of a shortened life expectancy and experiencing the mental/physical trials of CF have helped shape me into the person I am – a person I genuinely love and am so proud of. Because of these things, I’ve learned so much about life and the way I want to live it. These things have instilled courage, resilience, and determination within me.
While these things are all positive, the downside is that I’ve always hoped but never planned. I’ve lived well but haven’t prepared well. Perhaps it’s time to start planning for the future I’ve always hoped for; the future I can finally picture myself living.
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.
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!
• 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! 👇🏻
Oh, wait. That’s not right! It’s just that we’ve been watchingHamiltonon 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.)