A Long Overdue Update: A birthday celebration, toddler life, home IV antibiotics, and a hospital admission

Phew, it’s been awhile. Hi there!

I thought I would quickly write an update for Fenn and I while our one-year-old little boy took a nap this afternoon. There were some big moments/changes/challenges this summer both for Fenn and I, but I guess that comes with the territory of toddlerhood and motherhood with CF.

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Fenn
Age: 13 months
Weight: 22 pounds
Heights: 31 inches
Words: mama, dada, kitty, ball, hi, bye-bye, night-night, hot, shoe, ba-ba

Fenn turned one-year-old in late August! I can’t believe he is a toddler now! Let me tell you, that little guy had so much fun at his “Growing Up, Up, Up” hot air balloon first birthday party. He tasted cake for the first time and knew exactly what to do with it. He also loved helping us open all his presents and being the center of attention. Even though he’s just a wee little one, he totally understood the party was for him and that he was special and so important to everyone. We loved having our friends and family celebrate our sweet boy and all the joy he has added to this past year.

Fenn has been walking for a couple months now and is quite good at getting around. He loves to do laps in our house and climb up and down the stairs (it gives me a heartache every time, but we do it). He is CONSTANTLY on the move and I am exhausted 99% of the time. We have been working on adding more words to his vocabulary with the addition of baby sign language. I am surprised daily how quickly he picks up on language. We have a talker! It’s fascinating to watch him understand direction and learn to communicate with the world around him, and with us. I love hearing him say, “Mama” and then watching intently for him to motion to what he needs. I know I say this during every new phase, but I am really enjoying this age watching him learn and grow so quickly.

At the moment, Fenn really enjoys reading and looking through books, whether that’s solo or with anyone who is willing to sit read with him. He enjoys listening to songs, will do a little dance, and loves any toys that he can bang together to make noise (hmmmm, our kitchen pots and pans). His other favorite toys include stacking cups, cars, and balls. He loves to climb on everything and can get a little naughty when he wants to. He loves all different kinds of fruit, chicken, various veggies, and puffs at the moment. We are also still breastfeeding three times a day. He is always, always hungry.

Fenn is very social. I’m talking wants-to-be-friends-with-EVERYONE social. He loves going to story time and interacting with the other kids and adults. He loves being around people. He loves giving hugs and playing with strangers. He is definitely a high energy extrovert, meaning I spent 99% of the summer chasing him around. Lord, give me strength, please!

Last week, we had a very scary choking incident with Fenn. He was snacking on watermelon (which he has had 100 times before) and put too many pieces in his mouth without me noticing. He began to choke, and I quickly realized I needed to sweep his mouth to remove the pieces and then use the baby Heimlich maneuver. He coughed the rest out, but was very unsettled, drooling, and acting as if he was in pain. When Peter got home about 30 minutes later, we took Fenn into the ER because my mama intuition told me something wasn’t right.

In the ER, It took a long time to calm him down, and it was the most anxious and helpless I have ever felt as a mother thus far. He had an xray and Tylenol, and then finally settled from pure exhaustion. Because of the serious nature of choking and possible aspiration, the ER staff thought it was best to be transferred him in the ambulance to the main Rainbow’s ER for more tests and evaluation. Right before we got in the ambulance, Fenn puked on me and seemed to be better and in no pain. I think whatever was stuck in his esophagus had dislodged. We were transferred downtown, and our recovered Fenny-Boy had a blast in the ambulance–smiling, gabbing, ripping off his pulse ox, and showing off for the paramedics :|. I was just happy he was acting himself again after the scary non-stop crying and obvious discomfort. I was just happy my baby was back. Once we were there, the Rainbow’s staff checked him over seeing he was obviously improved and said we could go home after nursing him.

Thankfully, Fenn is ok and recovered quickly from the very traumatic experience. I am just thankful I knew baby Heimlich and CPR because I NEVER thought I would ever need to use such training. Everyone is healthy and happy now, but the Lord protected us throughout that night by keeping Peter and I calm and attentive and encouraging Fenn to be a good patient.

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Age: 28
Weight: 106
Lung function: 59%
Words: not as many as Fenn

Personally, it’s been a very challenging summer for me in terms of lung function and health. I started the summer off with two weeks of home IV antibiotics due to feeling tired and short of breath, and eight weeks later I was back on IVs again. IVs were not what I wanted to spend my summer doing but it happened and we made it through feeling better and stronger.

Prior to the most recent round, I felt “ok” but my lung function took a big hit. At my appointment, I blew a 48% and then eventually working my way up to a 53%. I knew I couldn’t sit with those numbers below my baseline and risk a permanent decline, and so I discouragingly made the decision so start three different home IVs again only eight weeks after the first round. I was discouraged. I was sad. I cried on the way home and had to mentally prepare myself for all the work and flexibility IVs demand from our family. I was doing everything right and yet somehow, I still ended up back in that “place”. That’s one of the most exhausting and disheartening parts of living with cystic fibrosis, and it can feel very emotionally painful sometimes. All my efforts to keep myself healthy weren’t enough, I needed to spend this summer with some extra help, and that’s the reality of CF.

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David Blakeslee Photography

I slowly started to notice minimal improvement on IVs, but didn’t feel I was improving, both symptomatically and clinically, as fast as I usually do. That’s when around 5 weeks in to my second course of IVs I started to feel as if I caught the stomach flu due to horrible stomach cramping and no appetite. I waited a couple days, hoping it would pass, but when the pain got more intense and I was obviously dehydrated (we were concerned for my kidneys because of the IV antibiotics), so my mom joined me on a trip to the ER. A CT scan confirmed what I feared; I had a complete bowel obstruction in my small bowel just below my stomach. DUH DUH DUH.

In the ER, they place an NG tube (a tube that goes through your nose down into your stomach) and suctioned the contents of my stomach to give me some relief. I received a bunch of IV fluids, nausea meds, and I felt much, much better. Then, I was transferred via ambulance to the main campus of UH and immediately admitted.

Over the next couple days, I was on bowel rest, nothing by mouth (not even ice chips, uhhhhh), and intermittent suction through my NG in hopes the release of pressure would relax my digestive tract. After I was suctioned dry, we then tried various solutions through my NG tube to try and dislodge the blockage. No luck there. We weren’t sure what was causing the blockage: old mucus, scarring from my appendectomy, or poop (of course). Bowel obstructions are very common in CF, but my blockage was in an uncommon location and so both the surgical and CF teams were a bit stumped at first.

Truthfully, I do not wish a bowel obstruction on anyone. Being filled with liquid when your body can’t digest and remove it, is simply horrible. At one point, my stomach was contracting so badly, trying in effort to move the blockage and solutions and my NG tube had clogged, the surgical resident had to replace it with the largest tube they could fit. Talk about an intense nose hose! My eyes watered like crazy! Thankfully, the first placement was successful, my stomach was suctioned once again, and I enjoyed a couple rounds of morphine after because the consistent stomach cramping was unbearable. I would equate the stomach cramping equal to my drug-free labor. I am as serious as a bowel obstruction, here. I am not someone who takes narcotics lightly, since I have a very high pain threshold, so you can imagine what this experience was like.

After a couple days of no good news, I was scheduled for surgery the following day (something we were desperately trying to avoid). Abdominal surgery is tough to recover from when you cough and have to do airway clearance. Also, one bowel obstruction surgery greatly increases your risk of another bowel obstruction. We were out of time and options. Until that afternoon, my CF doctor burst into my room and said, “If we go to radiology now, I bribed a guy with champagne to do a procedure on you.”

“Cool, lets go,” I said. I blindly got in her wheelchair and off we went.

I’ll leave it up to your imagination of what they did to me. But, I can tell you it included the head of radiology, a very large tube connected to a gallon of liquid, an x-ray machine, and an inversion table….

BUT, IT WORKED!

Thank goodness it worked! And thank goodness, I have a doctor who is willing to hand deliver me to radiology and be the absolute best advocate she can be for her patients. She promised me I would get home to my baby, and she delivered. I feel very blessed I am under her care. I left a couple days later, with all my bowels in tact and a strict order to never eat Pirate’s Booty White Cheddar Popcorn again. That’s right, Pirate’s Booty betrayed me. We saw the evidence with our own eyes. (No this is no sponsored. Please drink adequate water and consume at your own risk.)

Even though it was a difficult hospital stay, the worst part was that my admission was so abrupt and unexpected; we didn’t have a plan for Fenn. Thankfully, our families rallied together and he was cared for and even came to visit twice while I was in the hospital for a week. I missed him so much and felt very anxious about being away from him. I continued another two weeks of IVs once I was home and started to work on gaining the 8 lb. I lost back. After seven weeks of IVs, my lung function went back up to a 59% and we let my body rest. Overall, the summer was fun, joyful, and busy, and we came out both surviving an ambulance ride and and some challenging moments.

Thank you everyone who watched Fenn and cared for our family this long, difficult summer. Here’s to a healthier fall!

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Cotton Anniversary 

Two wonderful people tied the knot this weekend surrounded by their friends and family making it a happy and treasured past few days. I absolutely got caught up in the beautiful flowers, happy tears, and nervous smiles of the betrothed as they met each other at the end of aisle; but my observation of the vows has morphed into a deeper and greater experience following my own bridal march. What used to be a grand tradition of hopelessly romantic daydreams is now a more solid and applicable knowledge of what it truly means to promise your life to someone for all eternity.

This ceremony was no different- a fragrant and beautiful dream of devotion and spoken promises fueled by love said through eager smiling faces. Amidst my own silly permanent grin as an audience member, it dawned on me that of the two standing on the altar, it was very unlikely that one squeezed the other’s hand a little harder on “. . . in sickness and in health” as I did two years ago today.

Entering into marriage, I like to believe Peter and I were prepared for all the special obstacles that would come our way due to my health; but honestly, I’m not sure I believe anyone in my generation is slightly prepared for marriage. Marriage is tough business, folks. A happy and meaningful relationship is intentional, flexible, and progressive— adjectives unthinkable in a society saturated with instant gratification.

What didn’t occur to me back then was that most couples entering into marriage are healthy and vibrant twentysomethings and the realities of those vows “in sickness and in health” are far faded away by a murky trajectory of life. But for Peter and I, “in sickness and in health” was our now. It would always be our now and a significant feature of our marriage. It made our relationship special.

Has marriage with a chronic illness been easy? Absolutely, not. My disease has been felt deeply by both of us, in different ways I am sure. Moreover, just as in every other part of my life, the influence of CF has highlighted the very depth of my understanding of love. It’s given me a unique lens to view our marriage through, which is why gushing over my hunky husband right now is as easy as pie. When I think about the reasons I love Peter most though, his fearlessness and willingness to love me- my uncertainty, my burden, my lifestyle, my expectancy, my perspective- tops the list.

Peter took on a new life that would require him to work harder and love deeper with the knowledge of the possibility of losing it sooner. He has always been calm and encouraging when faced with our reality. That’s why at the end of each day, I fall asleep undeniably knowing I am wildly and fiercely loved by my husband.

And that is my dream come true.


Am I going to say Peter is an expert on everything CF? Heck no. Dude, doesn’t know the difference between albuterol and hypertonic saline. But, he’s always willing to learn in an effort to become a better caregiver- something I appreciate so very much. I might have once giggled as my mom instructed him on the how-tos of hospital sheet changing upon admission, or teased him when he learned to access my port while adorned in gloves and a mask, but what I realize now is the loving force of his intentional devotion.

Our young marriage is different. Our lives will always be slightly different than our peers in similar stages of life. Our priorities and goals have to be focused and planned in an effort to experience it all despite CF, and sometimes, our goals will be rewritten. Daily, I am reminded of the promise he made to me because I see him fulfilling those agreements through his actions- every time he moves my plethora of machines from one side of the house to the other, every dinner he has ever cooked because I have been in bed, and every extra hour he works so that I have more hours to care for myself. He has done it all out of love- just as he promised.

These past two years have been so much sweeter and far more superior because of that sunny Friday afternoon when Peter held my hands and vowed to love all of me- every last mutated cell.

Happy 2nd Anniversary, Peter! We made it to Cotton. I love you so very much!

(Congratulations, Katie and Steven!)

#31daysofCF

Happy, happy June! The month of May, or CF awareness month, is long gone by now but I saw the #31daysofcf challenge on Instagram in early May and liked the thought of it. Each day you are to cover a different topic in the realm of CF and I thought it very informational. (Also, you’re very welcome I saved you from enduring 31 pictures of CF on my Instagram account last month- that’s just too much. I need more cat pictures, I think.)

Below are pictures from the CFF Great Strides Walk at the Cleveland Zoo. The biggest thank you to those who purchased a t-shirt, joined us in walking on that very cold day, or donated to our team. You made it a very happy and humbling month!

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1. Diagnosis: I was diagnosed at age 4, which is slightly unusual (2/3 of CFers are diagnosed by age 1). I had no respiratory symptoms but suffered terrible stomachaches, stomach distention, and poor weight gain. The doctors were really clueless and frankly, didn’t believe anything was wrong. A very persistent doctor drove my mom to a nearby hospital and a sweat test showed I had CF on August 4, 1995.

2. First year- worst year: I don’t remember much of the first year because I was a 5 year old and as happy as a clam. I do remember my sweat test and my favorite nurse (which I still see to this day) explaining my pancreatic enzymes could taste like strawberries in my imagination. My mom probably has a different version of the first year: I had just been diagnosed and shortly after, my father was diagnosed with terminal pancreatic cancer. I am sure for my mom this was the most challenging and heartbreaking year of her life. She was and is the best caretaker in all realms of her life.

3. Medication $$$: Medication costs with CF (any chronic disease really) are astronomical. Orkambi, the first medication to treat the cause of CF, retails at $259,000 year- not even kidding. Pulmozyme, an inhaled medication I take twice a day, is $72,000 a year. Of course, I have primary insurance that covers a large portion of these costs but even the co-pays per a month would bankrupt you when you take 18 different medications a day. I am VERY, VERY, VERY thankful I qualify for an adult CF program from the State of Ohio which covers the remaining cost of my medication after my primary insurance. Hospital stays, doctor visit copays, clinical tests, and home IVs are a completely different story. It ain’t cheap being sick, ya’ll.

4. Illness + hospital admissions: I have lost count of my total admissions over the years, but my first admission was at age 11 for IV antibiotics (which is pretty dang good by CF standards). My longest stay was 41 days in high school. In college, I started “dorm” IVs so that I could continue going to school and reduce my hospital stay to only a weekend. Last year I was on IVs 5 times, which has been my worst year yet. Thankfully, I now bypass the hospital completely and begin IVs at home because my doctor is a rock star and that’s where I am most comfortable.

5. Diet: High-fat, high-protein, high-salt and high-calorie. This is why I am always eating :D.

6. Clinic: I have been going to the same clinic at Rainbow Babies & Children’s Hospital in Cleveland since my diagnosis and love the staff there. I could not say better things about my clinic. I even serve on their CF Quality Improvement Team as their only patient representative.

7. School: I am thankful that God has blessed me with intelligence and quick comprehension. In 4th grade, I missed 114 days of school due to CF and still don’t know how to multiply fractions. I had a tutor some years to instruct me when I was absent for extended periods of time, but I made it to Case Western and graduated with a Bachelors in Anthropology, Minor in Psychology and a Certificate in Global Health (still in the mix of getting my masters), so I did all right, I think?

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8. Non-compliance: Middle school and early high school were my non-compliant years. I didn’t physically feel like I needed my treatments and I was a snotty teenager. My mom had it rough for a while and we fought a bit before I got my head out of my butt.

9. Greatest accomplishment-biggest challenge: This is a tough one for me. I think my greatest accomplishment is just being genuinely joyful. The Lord has blessed me with consistent happiness despite everything, and I am grateful I wake up feeling that way most days. Lots of CFers (people in general, too) have anxiety and depression, and thankfully, I don’t suffer from either of those. My biggest challenge has been reminding myself that I need to stop comparing my life to the lives of my normal peers. It’s ok I don’t work full-time in a career, have a 401k, and I hop in bed at 8pm most nights. My life looks a little different and comparison is the thief of joy.

10. Pros + cons: Pros- Unique perspective, gratitude, faith, empathy, focus, strength, relationship with my mom and sharing my experiences. Cons- fatigue, pain, coughing, mucus, limiting my ability to work, feeling dependent on medication and others, and the financial burden.

11. P words: PICC line, port, pills, physicians, poop, pseudomonas- that’s all I have.

12. Cracking point: My cracking point was probably last fall. I was tired all the time, not sleeping, started Orkambi, suffering from chronic pain, and felt pretty horrible but my lung function was pretty good. Working full time was exhausting me and I had little energy to enjoy life otherwise. It was very confusing and I felt very burdened trying to be “normal”. Now, I feel much, much better after finding a better balance!

13. The first time I heard that big word (or phrase): “pregnancy in CF”. I remember being 13 and getting “the talk” from my peds CF doctor. Back in 2003, he said having a baby when you have CF is difficult but some women do it. You have to work for the opportunity to be pregnant and after that it was more of an “if” than a “when”. Other options included using a surrogate or adoption to preserve health, otherwise planning a pregnancy was important. That stuck with me forever because up until then I didn’t realize my disease would affect my ability to experience typical milestones.

14. Out of the mouth: “You’re so little.” “You eat a lot.” “Are you sick again?” “Do you need water/cough drop?” “Where have you been?” “You’re still hungry?”

15. Organ donation: Donate your organs, it’s really as simple as that. Double lung transplants, kidney transplants, and liver transplants are fairly common in end-stage CF. So many people pass away while waiting on the list due to organ shortages. Make your passing a time filled with hope and thankfulness for another suffering family. P.S. I am an organ donor as well!

16. What is that?: I hear this most often when someone sees my Vest for the first time or when I am in a bathing suit and my port is visible. Sometimes it’s just a puzzled side-eye look, but don’t think I don’t know what you are looking at.

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17. My support system: My mama, Peter, Sybil (of course), my siblings and cousins, and special friends in the CF community.

18. Hygiene: Germs are dangerous to CFers. When we catch the common cold, the chronic infections and the cold virus battle for resources in our bodies and can exacerbate our CF and become really serious. I don’t live like a germaphobe but many CFers do in order to stay healthy and out of the hospital. Wash your hands, cover your cough with your elbow, and get your flu vaccine, please.

19. Smoking: Ugh, smoking. Of course, I hate it. On one side, I don’t understand why you would choose to damage a perfectly good organ. But on the other side, I recognize the control addiction can have on someone, even someone who loves you and sees you struggling to breathe, and so I don’t really get upset when I see my family members smoking. Everyone needs grace and I have the opportunity to give it to them.

20. Family: I am the only one with CF in my family but we are unsure how many members are carriers. Within my family, two brothers married two sisters causing a group of double cousins who will also especially need to be tested before they have children, along with my siblings.

21. CF friendship: The CF community is crazy connected. Mostly, people talk online since we are encouraged not to be around each other due to infection control guidelines. It’s really hard not to be able to hang out in person with the only people in the world who “just get it”. I have bended the rules a bit this year and I don’t regret it!

22. The life of a CFer: Managing CF is a full time job. I do my Vest around 14 hours a week, treatments around 20 hours a week, cleaning and managing equipment around 4 hours a week. I take ~35 pills a day and continually watch my blood sugar. Add all this on top your average life of working full time (I work part-time now), managing a household, and having time and energy for a social life…. It’s almost impossible.

23. 5 minutes of fame: Salty Girls, working on The Salty Life Magazine, getting recognized in a townie bar for this blog- so funny!

24. Biggest wish: My biggest wish is to carry a pregnancy, be an exceptional mom, and have a nice garden to sit in with Peter. Underwhelmed by that wish, haha?

25. Biggest fear: My biggest fear, both on a micro and macro level, is missing out. I have extreme FOMO when my family hangs out without me because I am busy, too tired to do anything, or stuck in the hospital. I can’t handle it. I also fear I will miss out on life- pregnancy, raising kids, reaching milestones, or even silly family parties after I am gone. Also, that one day they will remove Friends from Netflix.

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26. A legacy like no other: I want to leave a legacy of empathy. CF has taught me so much about other people’s pain and I feel like I have an ability to experience their pain with them. I think bearing witness to someone’s struggle is one of the most important things you can do to support them.

27. My wish for CF: A cure for the people who feel like giving up, for the parents with children with CF, and for the young adults struggling to make really difficult decisions at such a young age.

28. Remembering those who lost their battle: This past year I signed onto facebook and saw too many posts about CFers passing away. It was a tough year for our community. Each passing is just as sad as the next, and I am always so heartbroken for their families they leave behind. I never talk about the life expectancy of CF on my blog, mainly because it’s not something I choose to focus on on a daily basis. But the reality is, expecting to live only to your early 40s is not good enough. People fight so boldy with this disease, and I always take a moment to remember them when I feel I am taking advantage of my own health. I am so very blessed to be where I am.

29. Fundraising: Fundraising is so important since CF research receives almost no federal funding. Thank you to everyone who supported our fundraising endeavor by purchasing a Flowerlungs t-shirt or joining us on the Great Strides Walk! Your support is so very appreciated and humbling and you are making a difference!

30. Raising awareness: The past year has really been a time focused on raising awareness about CF for me personally. I get to live this special life and therefore, I have a responsibility to open up and educate those around me. To me, awareness brings understanding, understanding builds empathy, and empathy accelerates change.

31. Thank you: Biggest thank you for reading this and making it to day 31! I hope you learned a tid bit and continue to enjoy your month- whatever that looks like.

-J

Great Strides + Snazzy Tees

One of my own unfortunate personality traits is that of being a slight pushover. I really, really naturally dislike making people feel uncomfortable or requesting they do things that inconvenience them. It just makes me feel icky all over and so I do it sparingly. Bleh.

For months, I have struggled with deciding whether I should form a team for Great Strides, the annual 5k walk and fundraiser for the CF foundation, or just wait until next year. We have a lot going on in our family right now, i.e. special showers, weddings, medical diagnoses, and a new baby on way, and I figured no one really has the time to fund raise or make Great Strides a priority. And, rightly so.

The truth is, paired with those excuses, I doubt my own ability to ask people to care quite often. And even after making the Facebook event and launching the booster for team tees, I am still doubting my ability.

This has been a hard transition in my experience of battling a chronic disease: opening up enough to share this part of my life and balancing my own perceptions of making others feel uncomfortable- or better yet feeling as if I am asking them to take on a piece of my burden. Only upon doing so have I realized that the result is an overwhelming return of the most honest support and encouragement. A kind of support far greater than expected and more desired than I ever knew.

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To everyone, thank you for caring, reading, carrying a piece of CF on your shoulders, and supporting my shaky vulnerability. You have shown me that it’s ok to request solace during your struggles and to wish to share in your own triumphs. I love you and will forever be grateful.

We would love to have every single one of you walk for Team Flowerlungs to support medical research and improve the quality of life for CF patients in the US on May 14th at the Cleveland Metroparks Zoo! Bring a buddy and come share in a beautiful day at the zoo!

How to get involved:

1) Join our team! All we need you to do to become a member of our team is click on the “Join our Team” button. The walk is free and from there you can make a donation or start your fundraising.

2) Can’t make it the day of the walk? Be a virtual walker and donate to any of the existing team members! Your donation will be used to help improve the quality of life for CF patients all over the US.

3) Order a tshirt and wear it proudly! Proceeds from the tshirts will be happily donated to Cystic Fibrosis Foundation. They are snazzy and designed by my Peter :).

With a heart full of happiness & gratitude,

J

Flowerlungs

It’s one of those heavy days, and I find myself lost in thought as the IV pump alarm fills the stagnant silence in the room. The only other audible sound is coming from within my lungs serving as a constant reminder of the setting of my reality. The air is unmoving and the shadows crawling from the corners are drawing closer to me under the fluorescent light as the evening passes. The shadows are eager to steal my warmth—they try endlessly, using the slow passage of time in the hospital room to their advantage.

I hear a gentle knock reverberating from the far side of the thick door as my mom pops her head in just slightly to say hi. The door glides open and in one hand she brings a lovely bouquet of life-giving flowers; in the other hand, a bag containing food from outside the hospital walls that I desperately desire. She quickly lays down her belongings and walks towards me, still wearing her own set of scrubs invisibly soiled from her own set of patients, to kiss me on the forehead as she asks, “How is my girl?”

As quickly as it appeared, the darkness evaporates into the light and the thick silence is traded for merry chatter. The flowers stand on the counter and gleefully whisper affirmations of joy, support, and splendor into my soul and all feels right again.


Spring is upon us and I am feverishly anticipating the growth of new life and my favorite by product of the elements: flowers.

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Flowers have always meant something deeper to me than just futile flora sprinkled over the landscape of our earth. Whether my connection to flowers is an inherited trait passed down from my mom, the same way cystic fibrosis passed from her genetic makeup to mine, or just a hobby that fulfills my soul’s desire of contentment, I know that they hold significance far beyond aesthetic appeal. They continually remind me of the incandescent beauty gifted from our Lord, the oxygen dancing within the breeze, and the immense control it takes to be present and grounded despite the tireless winds. They call my hand to pick, my nose to smell, and my eyes to savor retelling of the enduring capability of a broken body.

Moreover, I have always been under the assumption that flowers are the most powerful creation in nature. They have the capacity to spark restoration within our darkest moments, while simultaneously signifying every triumph or celebration in our lives. How is it they have the weight of such influence to do both? How do they illustrate both realms of sorrow and happiness? I am unsure. But, their passive strength is something I admire and something I aim to embody within my own existence.

Within my lungs due to cystic fibrosis, thick paths of scar tissue marble through chronic infection and reactive inflammation making it more difficult to breathe as time passes. There is a strong force feeding from the resources within my body, and it takes what it wants and leaves it’s mark in the form of perpetual damage. The reality is that my organs are struggling at the hands of a very powerful disease. I recognize my reality. I know this is what’s occurring within my shell, but it’s not how I choose to see my life.

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What if I chose to believe I am harboring prosperity and beauty by growing flowers within my organs- the very creation I admire so much? As time passes, I cultivate more blooms and they fill the spaces within my lungs and unexpectedly take my breath away- a trade off for their immense beauty. I pluck the thistles and allow further growth, and they fill me with unmatched hopefulness and appreciation. They serve as a mark of both my physical pain and spiritual triumph causing each inhalation paired with exhalation to be a reminder of a blessing. CF is my blessing in many ways and will remain as such.

I’d rather my breath be stolen by prolific blooms, an overgrowth of loveliness and grace, than relish in the reality of my disease. I have learned that true perspective has the power to change the course of your life, the power to smother anxiety and fear, and the power to transform destruction into celebration. I know my fight has really only just begun- I’ll be physically and mentally flooded far beyond what I can imagine in the years to come.

But, I am not afraid because I grow flowers causing my life to be more lovely and fulfilling than ever expected.

In those moments when I fail to produce them myself- when I lack the necessary elements vital to blossom- I know alternatively the people who love me with aid in supplying them. There will be a gentle knock reverberating on the far side of my door and I’ll overhear the words repeatedly said by my mama:

I will always bring you flowers because flowers heal all.

Indeed, they do and all is right again.

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