I absolutely love a birth story. They are narrations of incredible power and strength, vulnerability, immense joy, uncharted challenges, and unfortunately, sometimes deep grief—but always, always tales filled with bold love. Listen to a mother’s birth story and without fail, the ambient tone is love for her precious baby. I think it’s important to document a birth story because birth is a transformative event as it brings not only a baby into this world, but a mother. It’s the beautiful start of something dynamically everlasting: matrescence, or the act of becoming a mom. 

—Here is Selby’s birth story. 

Around 33 weeks pregnant, we noticed Selby’s growth was slowing down and my daily insulin requirements plummeted which was a red flag signally that my placenta wasn’t functioning properly. Early placental dysfunction is a rarer complication of diabetes in pregnancy, but it happens. To be safe, I was booked in for a 37 week induction to bring Selby earth side so he could continue growing outside the womb as soon as possible.

My pregnancy up until this point was not an easy one filled with many, many bumps in the road. In fact, the phrase “if she makes it that far….” was frequently thrown around at my appointments due to an early placental bleed, bout of preterm labor, IV antibiotics, high blood pressure, cystic fibrosis, CF related-diabetes, and never ending early contractions. 

I wasn’t overjoyed at the idea of an early Pitocin induced labor but was ready to have our baby safely here. In the unmedicated labor and delivery world, Pitocin, the synthetic drug used to jump start labor, has a very bad rap. It can make contractions even more painful and intense than they would be naturally. I was totally aware of this fact going into my induction, but I tried to keep an open mind about what was to come. 

The goal in birth is always just to have a healthy baby at the end of it, no matter how you end up getting there. However, because I experienced a precipitous labor with Fenn (labor lasting less than 4 hours from the start of contractions) my hope was for a more peaceful and slow ease into labor this time around. In contrast, I wanted the mental clarity and time to make decisions that I wasn’t granted with Fenn’s birth—such as bouncing on a birth ball if I wanted, walking around, pushing in different positions, reaching down to touch his head, experience the motions of labor, etc. I didn’t have the time or the mental space with Fenn to choose because his entrance was similar to a Midwest tornado—quick, forceful, consuming, jaw-dropping, unexpected. 

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Thankfully, my induction with Selby started in just that manner. At the beginning, it was almost boring with your typical Pitocin ramp-up starting after lunch, bouncing of birth balls, popsicles, and hospital TV. I made slow progress jumping from 2cm to 2.5cm at the start. At 5pm, I let the doctors break my water. I asked the doctors to wait to break my water delaying it for a hour, so I could get “there” mentally and eat another popsicle. I knew once they broke my water, my peaceful labor would end and be swallowed by a tidal wave.  

“We are getting somewhere,” I said about two hours later through ragged moans. My contractions were close together and growing more and more powerful. With a popsicle in my hand bouncing on the ball, I asked the nurse where she thought I was.

“Four or five centimeters, maybe? Hard to telI.” 

She asked if I wanted an epidural and I said maybe, but I wasn’t sure. I wanted to know how much longer before deciding. Our plan was to get back in bed and have them come check me and talk about the epidural thereafter. 

Honestly, I should have known better. 

I. Should. Have. Known. Better. 

Two contractions went by as I stood up from the birth ball and desperately hung on to the IV pole breathing through the peak and fall. They were so incredibly powerful and concentrated that doubt started to fill my mind. I wasn’t going to do this naturally if it continued like that, I just couldn’t. I was at the edge. 

They say history repeats itself. 

And as if it was four years prior, a sudden all consuming urge to push came barreling through my body. 

“Get them in here!!! Get them in here. I have to push, mom!” 

I should have known better. 

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Peter ran and got the team in the hallway and I scrambled into bed with the help of my mom. I was briefly checked and declared to be 10cm dilated. 

The nurses started the clock. Three minutes later, a few contractions, a touch of his head, some screams from me and then some screams from baby, a declaration of “It’s a BOY!”, and Sweet Selby was here. 

A perfect 5lb 12oz baby boy born at 7:40pm out of a mix of God and science in multiple ways— fertility treatments, a miscarriage, an extremely high risk pregnancy, and most importantly highly effective treatments like Trikafta giving me this second chance at motherhood.

The flood of emotions knowing he was here was overwhelming. I couldn’t believe that I became a mom again after believing I wouldn’t be. History does repeat itself and it was glorious. Our nurses and doctors joyfully congratulated us with trembling voices matching mine. They excitedly chatted about how they didn’t expect his quick entrance and that I was born to birth. All women are born to birth—but it was an incredible compliment to the start of my matrescence with two.

As Selby laid on my chest and we began to memorize his little face, the tone in the room changed. I was bleeding heavily and the medical team said I had clotting from a retained placenta. They massaged my abdomen uncomfortably to get contractions started but the bleeding continued.  Next, I was given medications through my IV and had my bladder catheterized to relieve some of the pressure to allow my uterus to contract once more. 

(Ugh, I went 31 years without having to ever be catheterized. That streak was now over.  Selby gave me my first catheterization.)

When the bleeding continued, they stuck a different medication up my bum and called the attending on the floor to come do an ultrasound to locate the clots. I could see worried faces becoming more worried, but I was too focused on the little face beaming up from my chest. 

Following, were some of the most painful moments I have ever experienced in my very long medical history. At this point I was still completely without pain medication after just having a rapid and forceful delivery. I felt every touch, pinch, and pull. The doctor explained she had to try to manually extract the clots from my uterus internally with her hand. Although necessary, they tried over and over again, and I wailed and tears fell down my face each time.

“I know this so terrible. I am so so, sorry I have to do this to you. Can you do one more time?” the doctor asked elbow deep.

I could do one more time, but each attempt was unsuccessful and the comforting voices around me began fading from fear.

After a few more tries, I told them I couldn’t do it again and that they had to give me something for pain. They said absolutely and pushed meds through my IV. I am someone who cautiously knows I love pain meds. It’s hard not to love pain meds when you live with chronic pain. So as the world got fuzzy and warm, I sunk in and gave them the “hang loose” motion asking them to not let the baby fall to the floor as I exclaimed I felt better and that they are all wonderful people. (I’m also really affectionate and encouraging on pain meds.) 

Once the pain meds fully kicked in, the doctor warned if the next extraction didn’t work, I would be taken back to the OR for a D&C. They tried once more manually and she was finally able to extract the clots. The bleeding slowed down as my uterus began contracting again.

I enjoyed all the lidocaine and rode my high from Dilaudid as we breathed a sigh of relief and attempted to stitch me up. It was over–our sweet baby was here.

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Labor can be brutal. It’s a high stakes game in an effort to gain the highest reward. I know people wonder why women choose to have unmedicated labors when there’s other options. I get it—it’s not everyone’s cup of tea.  

However for me, each of my labors have healed me in a way. They have brought me peace in a body that’s often my enemy because of CF. I plead with my body everyday to work in my favor, sometimes in vain. 

Breathe.

Digest. 

Absorb. 

Function. 

Keep me alive. 

Please. 

It’s exhausting to work this hard in order to do the things a body was simply created to do. All that frustration and disappointment ultimately lands somewhere and makes a home in your mind after all those years.

In my heart, I know my body has been purposefully and wonderfully made, but sometimes I need a reminder. Bringing my babies into the world in this way–fiercely and uninhibited– is that reminder for me. It washes away the doubt that I am not a capable mother. It washes away the flecks of fear that I’m simply not physically strong enough for this life. It proves I am dynamic and not defined by my disease that defines nearly all my organs. I can barely stay alive, but I can bring forth life like a badass. And for me, there’s healing in that power no matter how silly it might be.

Fenn and Selby’s births are truly a labor of love and a means of encouragement to me that I am–and always will be–enough as their mother.

They are my most beautiful moments.

You know what I have been thinking about a lot lately?

Our innate desire as humans to spend our time pursuing work and what happens when that doesn’t happen.

Last fall, I made the decision with the guidance from my care team and family to stop working full-time permanently. You got it– I am 26, “retired”, and ready to talk about it.

The choice to stop working full-time wasn’t exactly an easy or normative decision to be made in my mid-twenties while everyone around me was in the thick of building their own careers. Truthfully, the reality of it all swooped over me, approaching at a speed I couldn’t foresee and with a certain level of stealth I couldn’t possibly avoid. At the time, I was close to finishing my master’s degree in public health and enjoying my full-time job as a nanny when I felt my “career days” were coming to an end, even before they had officially started.

As an adult with CF, this isn’t technically uncommon. Many CFers stop working long before their peers for various reasons due to deteriorating health, increasing treatment burden, and the typical energy demands of traditional employment. Recent research shows that the act of limiting or discontinuing work is associated with preservation and improvement of lung function, making it a popular choice for individuals at various stages of disease. I was one of the many in this particular situation, but in retrospect, I was a very heartbroken individual.

Outside our little CF world, we don’t talk much about losing your ability to work. Maybe it’s because the stigma and judgment that can come with the territory of an invisible illness– sickness that can’t be seen with the eye; maybe it’s due to the internal grief we experience ourselves from the loss; or maybe it’s because we strive for normalcy and stopping work in your mid-twenties is the opposite of normal. I’m sure there are many other reasons, many other fears, and many other silencers that bury this dialogue deep from the outside world, but having faced it myself, I think it’s important to provide it some sunlight.

Last fall, I felt incredibly trampled by my disease’s unwillingness to compromise to the rigid expectations that were set before me– both my own and of those crafted from the outside. Larger society expected me to work as a well-educated, young, ambitious, and assumingly healthy adult, and I equally expected to somehow manage it all without fail. My body was incredibly worn out, but my mind and expectations were alive and well. It was the first time I failed to meet expectations as a whole, and it also was the first time I comprehended how attempted “normalcy” could jeopardize the quality and quantity of my future.

Consequently in the months following, my medical documents were reviewed and benefits filed. My five-year plan erased and purpose transformed. My schedule shifted and priorities realigned. I quickly recognized that for the first time in my life caring for myself and managing my disease was my actual profession. And, it felt weird. It felt isolating. Suddenly, I wasn’t 25 anymore– I was 65. But unlike those eligible for retirement, I found myself mourning the loss of something that passed long before its time: my opportunity to explore the typical working domain (i.e. social support from co-wokers, financial freedom, occupational purpose), to give back to society and make a difference, and to experience this particular hallmark of your twenties in a conventional way.

Something else that weighted heavily on my heart during this time was a sense of panic that people would assume my decision to stop working translated to laziness—nothing about CF life is lazy. (I know, it was really stupid.) I also hoped people would agree I was still filled with potential and value sans successful career. (Again, stupid.) Finally, I dreaded the unfair assumptions, beliefs, and judgments from overly critical individuals who frankly were clueless to my situation. (Sometimes, Janeil, you are just stupid.) For some preposterous reason, we care so much what others think of us that we sometimes lose our own measure of value. I think last year leading up to my decision, I lost my measure of value and success. I was trying so very hard to be “normal”—to fit into that stock mold of college, career, kids, retirement, etc. When in fact, I’m more than normal; I am extraordinary (just as you are)! When you are extraordinary, developing personal expectations that respect your own physical and mental parameters is the smart, healthy, and brave course to take.

If anything, a great lesson has sunk in and made itself home within my heart in the course of my short retirement: I am the only one who can decide what is right for me. You do not live in my body, you do not walk in my shoes, my heart is not yours, and vise-versa. I hope I give others the same respect in the way they choose to live the course of their precious lives.

I made a smart, healthy, brave and equally painful decision to hand over one large aspect of my life to faith last year. I released another piece of normalcy from my grasp. It definitely wasn’t easy, but there were so many immediate and delayed benefits that a year later I know I made the right decision. With clarity and perspective that can only be gifted with time, I am able to see how the Lord closed one door in the face of an incredibly hesitant and disappointed Janeil last November, while simultaneously handing me the key to my very own door factory. Beautiful opportunities were presented to me over and over again—things I couldn’t have done if I was working full-time and exhausting myself of my resources. I have crafted a lovely, but unique vocation for myself and I am so proud.

It’s true that the best part of having something taken away from you is the empty space it leaves to be filled.

I became a more helpful wife following my “retirement”.
I became a more trusting follower of Christ.
I released a significant amount of burden and guilt I carried around.
I started this blog (ONE YEAR AGO LAST MONTH!).
I learned to rest, heal, and renew when my body needed it most.
I became a more responsible and compliant patient.
I found fulfillment in sharing my thoughts and investing in the CF community.
I gained more mental and physical energy.
I joined The SaltyLife Magazine team and had my writings published.
I volunteered with our CF clinic’s Quality Improvement Team where my unique opinion was valued and I was able to give back to my care team.
I was asked to share more about my special life at speaking events.
I participated in important clinical trials that paved the way for a better future.
I had more time and energy to spend with the people I love.
I had the occasion to enjoy the many simple joys that filled my days.
Finally, I had an abundance of health essential to plan and prepare for a family.

What changes in your life are you hesitant to allow because of fear? Try to be brave and look for the other doors.

Always with Love,
J

Today is my birthday! 😀 I turn 26 years old today, and I’m not sure how I feel about it.

Before you throw your birthday cards illustrated with adorable cats out the window, hear me out. I don’t think I am alone in my approach to adult birthdays, aging, growing old, etc. It isn’t really a secret that in our modern society, aging isn’t a necessarily welcomed friend. We don’t celebrate gray hairs or wrinkles, and we don’t brag about our age after a certain point—we may even hide our true maturity, drop a few years when we can, and celebrate when randomly carded at a bar. Even more so, research now says that Millennials (that’s me!), specifically, fear aging more than any other group. Now, I can’t speak for an entire subpopulation, but I can confess that I, Janeil Emma Jaggers Whitworth, am afraid to age—even when it’s staring me in the face on my own birthday.

There, I said it.

To me, it seems there is some indiscernible indent in time when we stop thinking about birthdays in terms of growth and milestones, and start thinking about them in terms of decline and degeneration. We stop asking what the birthday boy or girl wishes to do in their 30th year of life, 55th year of life, or even 83rd year of life. We stop imagining growth and ultimately, presume decline. I suppose we do a great disservice to ourselves when we buy into the myth that our best years- our healthiest, most joyful years- are behind us. I have fallen victim to this way of thinking. I see it in the way I view my own aging process with CF, and I am challenging myself to stop it right now– at age 26.

Moreover, specifically in the world of cystic fibrosis, aging and adulting with this genetic disease is a relatively new phenomenon. Two decades ago, CF was once considered a pediatric disease but thanks to better care and research, the CF population is now composed of more adults than children. It’s exciting! It’s hopeful! It can feel like we are entering uncharted and anxious territory. That being said, the very nature of CF is progressive. As time passes, we are expected to get worse and birthdays can serve as a metaphorical reminder of that detail. Even when we talk about treatment, we chatter about halting the damage, or stopping the effects of time—we talk about only maintaining with each year.

We stop imagining growth and presume decline.

Today at age 26, I will be dropped from my mom’s health insurance and have spent the last few months choosing a new plan, coordinating benefits, and praying I haven’t made a mistake overlooking a minor detail. Today at age 26, I am 10 pounds lighter, my lungs are weaker at the moment, and I am on IV antibiotics following a bout of unknown sickness that slightly rocked my little 25-year-old world.

Maybe I needed to be at this point the moment I turned 26 to really test my belief that aging can be focused on improvement. At this point, I have more room to grow–more space to advance and rally than my previous years. I have percentage points to gain and goals to work toward once again. I am firm believer that things happen for a reason, and maybe that reason being I personally needed a reminded to view my own movement of “progression” in an upward slope, instead of a downward one. To start at the bottom and find my way back up– to appreciate that if this is my “bottom”, than I am more blessed than many.

So as I turn 26, more than ever, I am now holding onto the belief that this will be my best year yet! There is so much beautiful opportunity to look forward to. So many things I wish to see, do, and especially, eat. Twenty six and counting is my new motto.

Let’s party! Bring on all the queso and all the cake! I have work to do.
Thank you for all the birthday love and wishes! Let’s make birthdays about celebrating our lovely potential surrounded by the people who help us achieve it.

Once again the great folks at the Cystic Fibrosis Foundation allowed me to write for the Community Blog about a recent appointment Peter and I attended. As I write below, we are tiptoeing into the process of extending our little family and I feel honored to be able to share my experiences with an array of audience members. 

Read it here.

I realize that the journey to parenthood can be quite an intimate process- a secret kept between two partners and then eagerly shared when there is news of an actual baby. Once again, our process is a little different. There’s more planning before conception, more risk to discuss and questions to answer, and a closer watch by a large medical team (already not so intimate)- a type of process many have so little knowledge of. 

It was just this year that the CF Foundation added a portion on their website highlighting reproductive health. In 2016, we are finally ready to say having children when you have CF is plausible. It makes me incredibly happy that we are at this point in our fight on the grasp of CF, but there is a substantial lack of research and resources for women in my shoes. 

The truth is, we are our best resource. That “we” being the community of women with CF who hope to become moms and those who have simultaneously mastered both roles, patient and mother. Facebook groups, Instagram, and texting have connected me to women who have experienced it all in their journey to motherhood and they are willing to share. 

Essentially, I felt compelled to share my own intimate journey as a means to repay all the women who have offered up their own stories, experiences, advice, and encouragement to me over the last couple years. It always helps to know what you are facing, to have a source for answers to questions, or a friend to confide in. 

I hope my blog can be added to the wealth of knowledge. If by chance, young women with CF stumble upon this blog, I hope they will be encouraged to take the very best care of their bodies in preparation for what the future may hold. I hope they’ll be calmed and they’ll be informed on the hills and valleys before them. More importantly, I hope they’ll know they are supported by a group of women who understand the road to parenthood with CF may not be the smoothest, simplest, or most conventional route on the map. 

Love, 

J