Cotton Anniversary

July 11, 2016July 13, 20163 Comments

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

(Congratulations, Katie and Steven!)

A Fervent Love

May 8, 2016May 8, 2016Leave a comment

Happy Mother’s Day!

To all the women who have sacrificed because they love their children more passionately than possible, you are greatly appreciated and adored. Thank you for being our mamas! Enjoy the sunshine and know you are loved today and always.

I believe in the unparalleled and fervent love of mothers. A love so bold, so encompassing, and so very selfless that begins long before birth and spans beyond the stiffness of time. Collectively, moms fix the hurt, celebrate our happy, and love outside conditional limits. They are a fierce force of protection eager to guard and give to shape a small life. Sacrificially, moms follow one simple rule: love your children with all your might.

And they do, beyond reason, beyond appreciation, and beyond awareness.
My mama is uniquely very special (a fact- not an opinion). She’s a single parent (the only parent I have truly known), a respiratory therapist, a three-time cancer survivor, a listening friend and counselor, and the most dedicated caregiver. She has tactfully served so many roles over the years, but I have been blessed to know her in a very different context than my siblings: a mom of a child with a life-threatening chronic disease. Particularly, this version of my mom always outshines any standard of exceptional motherhood; the length of her love and the depth of her love are endless.

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If I sat down to type out every time my mom held my childish hand at the sight of a needle or decided her own needs and wants were second to my health; for every ounce of anxiety and grief she replaced with comfort and refocus this post would be never-ending. I can’t recall the sum of minutes she has spent hugging me or the many difficult conversations she has endured unruffled so that I could be the blubbering mess. I don’t know the exact amount of money she has dedicated to hospital bills and medication or the number of nights she lay awake with worry. She protected me from the scary reality of my disease and gently handed over pieces and parts of my truth when it was time and I was ready. She understands my limits and still yearns to indemnify them- lovingly, helpfully, and encouragingly.

2016-05-06_Photo5 2016-05-06_Photo3 Moreover, her greatest service is that of the living example she sets by repurposing very ugly moments as fuel to a faithful and fighting spirit. Never needing to craft stories of strength and resistance, she fully embodies those qualities. She is tough and knowledgable, yet gentle and funny. My mom has guided me in recognizing a sincere truth: financial stability, success, and supposed normalcy will never be as valuable as the Godly love you show those around you, the attitude with which you fight your hardest battles, and the gratitude you allow to fill your heart. Those are the important bits to hold on to in this life.

These lessons have been the greatest gift a sicko can learn from a woman who has given everything in support of your life, health, and happiness. I will be forever grateful for the time we have spent alone, just the two of us, waiting for appointments or seeking further healing while enjoying the company of someone you know loves you beyond understanding.

I love you, mama! I know that I was carefully selected to be your daughter so that I could learn to fight like you. Thanks for being my fervent mother, always loving and eager to care.

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Flowerlungs

March 20, 201615 Comments

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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The Funny Bits

March 7, 2016March 7, 20166 Comments

Hello, everyone! I apologize for my month long hiatus from the blog recently. Honestly, my only excuse is that life happened and it kept me busy and away from writing. However, I’m back now and have a very exciting month of posts awaiting! Thanks for reading and supporting me as always. -J

I am convinced there are two types of people in the world: 1) those who wake up from anesthesia and cry for no reason and 2) those who wake up and act as complete fools.

I am the latter.

Things have been heavy around here, both in life and on the blog, so I wanted to share a bit of cystic fibrosis that is just plain silly. That bit being the videos your family takes of you while under the influence of both pain medications and anesthesia.

Here’s a mini compilation of some of my finest stupor-induced moments over the years.

Truthfully, sedated Janeil is one of the best versions of me. She wakes up giddy after a magical nap; she believes everyone is her friend and wishes them the happiest of holidays; and she remembers that her sister Jessica loves a hospital-cult favorite: shortbread cookies. Although she asks the doctor inappropriate questions and has no idea what personal privacy means after flashing the entire post-op staff, she is happy and perceptive of the goodness in the world.

I love watching these videos and being reminded that life doesn’t have to be so serious all the time, even in those moments that seem incredibly sober– like surgery.

Today, laugh.

Better yet, thank the people who make you laugh.

Make others laugh and help them sweep away the burden that can inexplicably fill our days.

Offer smiles and compliments.

Be kind to yourself and compassionate to your enemies.

Happy Monday, everyone!

Take a breather and enjoy the goodness around you even if it forces you to act like a fool– I will not judge you.

Be Still and Christmas On

December 4, 2015December 4, 20155 Comments

It’s the most wonderful time of the year!

Peter and I decided to put up the Christmas tree this weekend and officially welcome the holiday season into our cozy second floor duplex. If you want my opinion, the tree should have gone up the day after Halloween and we could have enjoyed the twinkle lights, childhood ornaments (including an orangutan and lots of baby dolls), and Sybil’s picturesque naps under the tree for that many more days. Christmas can never come too early in my eyes, but I have learned that certain folk around here have very strong feelings about appropriate holiday timeframes. So, we waited to put up the tree due to a busy schedule and peer pressure. To them I say, “To each their own”, and to me I say, “Can I get a tree for every room?” Ultimately, the answer is no.

Christmas is my definite favorite time of year. Ask any one who knows me and they will certainly agree that my internal clock cycles around Christmas. It is the start and end to my calendar year and what I find myself looking forward to beginning December 27th (the 26th is devoted to post-Christmas depression and only that). As you can imagine, I was itching to decorate the tree. I was eager for the forthcoming nights of beaming warmth that set the scene for my one-woman shows that include Claymation sing-a-longs while dressed in my Santa PJs, novelty socks, and mistletoe headband. That actually happens all the time and I suddenly feel very bad for Peter.

Oh, well.

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After the boxes were awakened from their slumber and brought up from the basement, we stacked the tree, added multiple strings of lights and sprinkled the ornaments about with minimal bickering (newlyweds, can I get a hallelujah?). Then, an unsolicited feeling that has burrowed its way into my body for the last year became overwhelmingly apparent: tiredness. Next, the dreaded mental reminder that I have become sick of hearing crooned: Sit down and take a break. “Take a break” has practically become my mantra this year and I dislike it very much. Honestly, I wanted to keep going, and so I threw a silent tantrum and walked my sorry Christmas-self to the couch and sat down to pout.

It is in these moments that I realize how little control I have in my own body. How I spend my days strategizing and how some days that perfect strategy doesn’t even come close to fruition. It is discouraging. I want to keep up with my husband and prove that I am fine, that CF plays such a small role physically that I am able to push on. In reality, this is far from the truth and my supply of oomph empties long before the project is finished usually.

Still taking a break…

After those negative feelings dissipated and I came to my senses, I heard this year’s counterargument faintly whispered, “Be still.”

To me, “Be still” is an unabridged prompt to the goodness that is my life. Be still means:

Janeil, rest now and enjoy this moment you have been given. Take it all in, smile at the people around you, and be grateful for this day. Be still in your discouragement and worry. Be still in your plan and expectations. Be still in your stubbornness and resistance. Be still in your pain and fatigue. Be still and rest. Be still and know that I am God.

The Christmas tree went up, I rested, and the Savior that is born this month fulfilled the everlasting promise of contentment in my life. I love Christmas for this very reason. Christmas beckons for us to be still. It is a time to cast away our worries and our darkness to focus on the glory and joyfulness of the past, present, and future. I have been abundantly cared for this year, despite my inability to be still. Christmas is a time to celebrate that noble gift and I plan to do just that (in my mistletoe headband).

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