Life in Numbers

My name is Kat Porco and I live a life defined in numbers. The most horrifying of which is, thirty-two the life expectancy of my daughter.  It has been twelve years since Maylie entered the world. 9, since a name was given to the painful set of symptoms that consumed our lives and perplexed the doctors for her first 3 years of life. On that fateful day, her body was a mere twenty-three pounds of GI and pulmonary distress, her oximeter reading, 72.  2, the number of weeks the doctors hypothesized she would have lived without diagnosis.

Fifteen hospitalizations since her diagnosis, IV antibiotics consuming almost forty weeks of her young life. She grapples with four co-morbid diagnoses; peripheral neuropathy, asthma, GERD and cystic fibrosis related diabetes.

Procedures flood our lives, making it increasingly difficult to track. Over 30 port accesses, 6 PICC placements, 2 PH probes, 2 feeding tube placements, 4 Bronchoscopies, 2 colonoscopies, 1 endoscopy, 1 port placement, 1 fecal transplant and 1 air flight for peritoneal sepsis.

Maylie lives a life that begs her to be strong, in a body that continually fails her. The idea of resilience in cystic fibrosis is the supreme illustration of irony, you need reprieve from pain in order to find resilience, do you not? I question how we can continue to break and not be broken.

Each upcoming procedure begs of me an emotional triathlon of strength and support. I await the moment when a procedure is announced in her presence, I watch as her spirit visibly breaks through her eyes. While not the most horrifying of procedures, her first PH probe will be forever embedded in my memory.

Her eyes dart rapidly, like a wild animal, scanning for potential predators; they land upon mine, only for a second. Her face is a reflection of the fury that exists within, her inability to trust anyone -- even me. I reach for her with motherly compassion, and she pushes me away. At twelve years old, she has learned distrust from the countless similar moments that have flooded our lives since her cystic fibrosis diagnosis. Today she sees me as an enemy, as much as any unfamiliar nurse who enters her room, maybe even more so.

Maylie's cynicism for me is grounded in experience, that reality is harrowing. She knows that, when necessary, I will abandon the maternal commandment to protect her. Her distrust has come from countless procedures associated with her CF. Although I understand that they are all necessary and for her greater good, she has experienced fear, pain and distrust. She has learned that I will betray her through my participation.

She knows that if the situation deems it, I will be forced to ignore her screams and perform a role in which I seem almost robotic. I hold her down, attempt to calm her, and worst of all, I consent. I consent to her body being violated, her wishes being ignored and her all-important voice unheard. She is no longer a person. She is a patient.

After the procedure, she looks at me in disbelief. She stares deeply, reaching into my soul and then she asks the question I silently begged her not to ask, “Did you know they were going to do this to me?” My eyes well, my heart sinks. I nod feeling the fear of my admission. Her eyes squint from the pain of betrayal, and she says, “I hate you for this.” Any small ounce of strength that I was able to muster up for this day has been depleted three times over.

I sob like a child, apologizing over and over. The nurses try to console me, explaining that she doesn't mean it. And while I want the reassurance, their words are useless. I have failed her. She was in a living hell, and I did not save her from it. I could not.

The following week, I grappled with immense sadness. I lost my former self; I was simply a shell, walking blindly into the unknown. A part of me died that day, and rebirth of that fragment of my soul is impossible. There is no greater instinct than a mother's need to protect, and I have had to willfully disregard it countless times.

Through this journey, I have learned that protection is redefined in chronic illness. It is often making choices that are painfully unfair; choices that will make us betray our own children. However, it is our strength that commands us, otherwise we would run. Every part of my being screams to flee the procedure room, but I stay, hoping that my presence brings Maylie even one second of calm.

I balk at this CF fight, for it is a fight against time, not steadfastness. For if dedication guided this journey there would be no question, we would prevail. But the unfairest of truths is that nothing in CF is based in reciprocation. We put in endless hours of therapies, countless drugs enter her perfect, undeserving little body, often in rapid succession. However, nothing stops the inevitable at this point, so we wait, not so patiently. We hold tight to the promise we hear so often that we are stronger than we feel.

 

 

I Stand Tall

Originally posted on:  http://breathinisbelievin.org/2018/06/25/i-stand-tall/

I stand tall. Wearing seemingly impenetrable armor, a rented costume that I, unfortunately, do not do proud on many days. Stripes and patches clutter my torso, ultimately representing both my daughters and their unique life experiences, as they continually intersect with CF.

This mask, I wear it well, it is hard at times for me to recognize that it is not my own skin. It mimics each part of my being. It hides a wariness that is not seen by many. Those not intimately familiar with the lines that streak my face would never see through to the conflict that muddles my heart. There is this fragility that quietly lives behind the laughs and smiles, waiting between the eves of my soul. I admit that at times it bathes me in falsities, protecting me from the tears that sit, at the ready. One wise insightful vision, one cough, one culture result away from exposing my vulnerability to the world.

I live in a world that could be described as misperceived resilience, solely because I am still standing. People presume that when your children hurt in the ways ours have, you break. I reject that notion, as it infers that breaking is an option.

I sit now, perplexed. Questioning what strength really is in this society. Is it the merely the absence of weakness? And if that is the case, then what defines weakness? Is it being vulnerable? Is it questioning why the world works as it does? Is it accepting why one family continually boasts success while others battle unrelenting hardship? How do we gauge the tenacity and solidity of humans? I look to my fellow warrior moms and question if strength is not actually measured by the ability to take another step forward when nothing else makes sense because I see no greater strength than that colossal expression of resilience.

I recognize the atrocities that exist. I recognize that some of those exist within my children and their formative experiences. But, I also see the countless moments of beauty and supremacy that coincide with these in great and obvious disparity. I try to make sense of this thought chaos that is whirling through my mind.

I glance out the window, the rain is coming down in summer storm fashion, obstructing the view. Reminding me of how blinded I can become by imposing my unfounded fears on a future which has yet to be actualized.

I observe my mind as it follows my physical body, seeking camaraderie with this unrelenting rain. I ache to connect with this emotion, almost a reassurance of this guiding principle to be tenacious. And then as suddenly as it began, the rain stops. As I emerge through the doors, an unexpected break in the clouds startles me, a stream of sunlight warms my face. I am bathed in the reassurance that every storm transitions into a peaceful moment where the rain slows to a mist, the clouds will part and sunshine once again illuminate the path in front of me.

 

The Bridge to Empowerment

Between the worlds of adolescence and adulthood lies a tightrope, haphazardly straddling a crevice. Chronic disease demands an early crossing, necessitating unfaltering confidence for decisions previously reserved for the wise and seasoned among us.

I sit stoically in the seat reserved for me, the one closest to the door. My former seat, strategically placed next to the team, now holds my daughter. She sits with the slouching posture of fear. I wait, she waits, time stands still. There is nothing to say, as fear has such few words. I grab her hand, reassuring her with a weak smile that we will choose the right course. Silence and empowerment, the conflicting tools we use in an attempt to create balance.

The knock shakes our silence. He swiftly enters the room, his smile like a blanket around her anxiety. She sits taller, exuding the strength that I wish I could embody. Not so long ago, she was simply a child in this room, oblivious and naive. She sees his calm, recognizes his confidence, and then simply positions her body toward her guide, and away from me. I could not be more proud.

The ensuing moments will stay with me indefinitely. It was the first time I witnessed the effects of true partnering. I saw a human behind the stethoscope, and wisdom in a child that was silently begging to be honored. I was present for a moment when everything changed. For the first time, she understood her own value in this process and the significance of her voice on the team. It was the turning point in her care, offering her the opportunity to see her own unrestricted potential.

Tests, symptoms and exam showed that we were yet again wallowing in the gray of indecision. With kind eyes and an open soul, her doctor told her she was the expert. Reassurance abounded. Words of empowerment rang through. He held space for her as she asked the same question repeatedly, hoping for a new answer. It was clear in that moment, that he made a choice before he walked through the door, to value her spirit more than his own time.

Leaving the room we knew the path we were on. Yet she walked out the door embodying the person that he made her believe she was, strong, confident and empowered.

 

 

Riding the Rollercoastersi

Cystic Fibrosis. Strength and weakness entangled in an endless power struggle, the platform of our divided journey.

On a rollercoaster that we are unable to disembark, I grip a tear-stained ticket that I wish to God I could return. Life mimics this rickety ride, gaining speed, going faster and faster, leaving my future fears scrambled with current realities. Motion sick from the ride, I embrace my conflicted heart, realizing that there is only one option...I await guidance to lead me toward that path of most resistance, strength. 

I allow my tears to speak to the weakness that lives within my heart, aching for my daughters. One in a constant, uphill battle for her life and the other watching quietly from the sidelines, observing the pain, running from the fury that she sees in her sister's eyes, relegated to the reality that she cannot fix the unfixable. My tears, the only tangible evidence of the wounds inflicted upon my heart over their sisterly love and yet conflicting wars.

I balk at this CF fight, for it is a fight against time, not steadfastness. For if dedication guided this journey there would be no question, we would prevail. But the unfairest of truths is that nothing in CF is based in reciprocation. We put in endless hours of therapies, countless drugs enter her perfect, undeserving little body, often in rapid succession. However, nothing stops the inevitable at this point, so we wait, not so patiently. We hold tight to the promise we hear so often that we are stronger than we feel. I hold this space for longer than I would like to admit, honoring the reality of CF. Then I see it, a small light beckoning me to preserve through the darkness of my future woes and live in this moment. 

From some place deep in my soul, I regain my faith in the future. I stand tall, wearing armor designed for this fight, I make the choice again to be strong, knowing I will have to remake this choice every single day. It does not come easily, however it is the only option that supports the life they deserve.

Maylie looks to me to understand how to see her disease. I re-choose to model strength. Not because I live in naivety about the future, but because my eyes are wide open to the implications of this disease. She will need the fight of 1,000 men to stay strong in the darkness of this disease. So I will leave my innate desire to run, abandoning the pain, as that is an option she has not been afforded. I will show her how to cultivate the fire that burns within the strongest of fighters. I will take my tears and turn them into weapons. I will show her how CF gives us blessings even in the darkest and most painful  days. I will teach her how highly I value her life by being her partner in this journey. I will hold her hand through each unfair violation of her body. I will sit with her during each treatment, passing time together, teaching her that this is a family disease and that she is a blessing, not a burden. 

I walk toward the vision of empowerment, focusing my fury on something that gives me some semblance of control in a world that spins rapidly around me. I recognize that only I have the power over what ensues, I have the blessed option to choose strength, to choose resilience. So, forward we march.

Empowerment tools

Hospital stays/procedures:

Creating a plan together to honor her needs and desires to be respected in a world of fear. While we know we cannot always be 100%, it is a guide that can help her feel like she is part of the team.

Treatment 

We read for all treatments- everyday. Yes, it is treatment time, but it is also protected time for my two girls and I to connect. Phones, computers and the demands of life are quieted and we dive into book after book, enjoying the respite from the day. Treatment gives us two hours of protected time everyday to be a family.

Nutrition

Living with CFRD is yet another hurdle in life with CF. But we face it as a team. As a family we choose to eliminate simple carbohydrates from our daily choices. We fill our diets with high fat dairy options, butter and oil laden veggies, nuts, avocados and meat. We avoid the foods that create elevated sugars, knowing that we can maintain a high fat, high caloric diet without excessive carbs and sugar. It takes dedication and commitment and a little ingenuity, but it is worth it to us. 

Self-Care:

It is easy to become entangled with guilt over the unfair demands of CF, but teaching a child to be their own advocate and caregiver is a gift that we often overlook, assuming that holding the burden is our job. But, that steals the opportunity for them to learn slowly the demands of CF. Giving small doses of responsibility over the span of childhood allows them to take pride in self-care and fail while there is still someone to catch them and encourage them to find the path to disease management. Find a schedule template that you can fill out together- help your child to embrace an age appropriate amount of CF tasks- allow them to enjoy the gift of disease management.

 

Strength from the Shadows

Her eyes, a window to her soul. Searching for answers, slowly beginning to grasp the immensity of this disease. Her life consists of countless prodigious moments, but equally a darkness that she did not choose. She spends hours in waiting rooms, pharmacy lines and clinic appointments; her face showing the complex and unfair role of being a sibling to a sister living with a chronic, life-shortening disease. A role that she embraces without hesitation.

Watching from her supportive place on the treatment couch as her sister enters into a routine and predictable coughing spell, continuing until her face reddens and exhaustion takes over. She holds out her little hand in sympathy, a role I was not asked to perform until my 30s, yet at the young age of nine, she has mastered it with precision.

Holidays are often cut short by hospitalizations, family reunions go unattended, much anticipated play dates are cancelled due to a cough that threatens to propel us to yet another exacerbation. Home school, a reality that she accepted with complete grace and understanding, leaving behind friends without question, knowing the importance of protecting her big sister. This reality is haunting. Growing up facing the mortality of a sibling is consuming at times-- and frightening all the time.

We strive to make our lives about all the moments in between what CF dictates, but the reality is that treatments, hospitalizations, appointments and blood draws fill our lives. Despite medical advances, our CF dedicated responsibilities demand more and more each year.

Rich blessings abound in countless areas of our life, but with that, there is always an underlying fear, a silent demon lurking in our house. A growing energy threatens to tear our family in half for days or weeks, whatever CF deems appropriate for the next hospitalization. Her strength through these hardships is truly a vision, she carries all the burdens with a beautiful sense of grace and understanding.

I envision what her life would have been like without the ugly face of CF invading it. Would she be happier or less anxious without the constant sense of unease for her sister? More importantly, would she be as empathetic and supportive as she is because of what CF has demanded from her at such a young age?

What would their relationship be like without the burden of CF changing the dynamics of our family in an instant? What if CF had not taught us all the importance and gratitude of being present in each perfect and imperfect moment?

So many questions that hold no answers. I stand convicted by the gift that stands before me, holding my hand when she can sense my fear. Balancing the weight of the world at times, but doing so in direct response to the love she holds for her sister.  I laugh in the face of CF- it thought it could break us, but it made us stronger.

I circle back to her smile. Recognizing in this moment that life gave me Ellesse as the counterbalance to CF. I was given a light to illuminate the darkness.

More than CF

Chronic disease, a lifetime membership to a world that offers few benefits to justify the exorbitant associated fees. No matter our relentless attempts to achieve our version of normal, the disease still defines us, it controls our waking thoughts, taints our dreams and fills our nightmares with unfair doses of reality. 

I stand perplexed. We, as a community repeatedly and symbolically beg for an even stronger connection to this disease through concrete and foundational labeling. It shows our complex need to be defined by the demon which fuels our greatest fears. I am going to ask-why? I am going to challenge this set of words that our community uses so flippantly to describe ourselves and our children.

I have two incredible daughters. Ellesse is stunning, empathetic to no end, giggles uncontrollable and contagiously over the silliest things. Maylie is beautiful, strong and inspiring; she is all these things and more in spite of CF, despite all it's cruel attempts to steal her spirit, she is strong because that is at the core of who she is as a person. She is beautiful because of her smile, her compassion for others who are suffering, worrying about the patient crying down the hallway, while she is in her own living hell. She is strong because she never conceeds, she is relentless in her fight. She is inspiring through her dreams, her quiet demeanor, her desire to share her greatness with the world. 

For all those reasons and so many more, she is Maylie and she is my beautiful daughter. She is not and will never be a "CFer." Labeling her by the disease which has stolen so many moments from us, is telling the world that CF is the defining characteristic of who she is. Using that one aspect of her life to categorize her is greatly underestimating the person she is and the power that she has to rise above CF and be who she is meant to be in this world.

We, as parents strive to create an environment of boundless opportunities for our children, especially in light of the restrictions that CF unfairly places on them. I choose to walk away from a name that puts a ceiling on her greatness.

In this same rite, I am not a "CF Mom" I am a mom, my daughter has CF. But, I am still just a mom, partnering with my daughter in her CF care. When did we as a community decide that CF gets to change the most intimate relationships that we have with our children through such an all encompassing name? What purpose does this serve? 

I beg you to consider finding a new way to connect, a new way to define yourself and most importantly a new way to define your child. Look at them tonight as you tuck them in for bed. Are they cystic fibrosis? Or are they so much more than that? If so, allow the label to be a part of the evolution of this community, as we work toward creating strong, beautiful and resilient children who also happen to have cystic fibrosis. 

Empowering My Daughter to Take Charge of Her CF Care

Originally Published on www.cff.org on June 1, 2016

My mind races. My heart aches. I have read five chapters in a book that I couldn't even summarize for money. I honestly couldn't even produce the title if need be. I sit patiently, waiting for my name to be called. I have been waiting almost two hours; it seems like lifetimes. I finally conclude that no one actually needs me. 

I grapple with the emotions I am experiencing right now. What is this feeling of loss? I wonder if it is lack of control, missing the interactions with staff or maybe it is simply frustration that I have been following an unspoken protocol, ignoring that my daughter was ready to fly solo. I have spent the past 10 years trying to protect my daughter from the “unspeakable” by being her advocate. I now question if I have been misguided. Maybe the best way to be her advocate is to recognize that she has the tools to advocate for herself.

After realizing this, my mind becomes calm and my heart takes on a feeling of pride rather than loss. I realize that today, after she was asked a very simple, yet life-changing question, “How have you been feeling?” for once she didn't look to me to answer. 

I am not there. 

She is given this rich opportunity to think about that question, assess what that means to her and respond as the true expert in her life. How empowering.  The reality is that my intelligent and capable daughter has brought a book to clinic because I have been her voice. Other than the exam and PFTs, she actually has not needed to attend clinic because I have been so thorough in reporting the nuances of her life. My controlling nature comes from a place of love, making sure that I have ample opportunity to articulate what I observe, voice my concerns, ask questions about the unknowns in an effort to be an advocate for my daughter. As though that will somehow give her an edge to fight this unforgiving disease. 

I now see that my need for control runs the unintentional risk of teaching Maylie that she is simply a bystander in her own care. I come to a modest yet poignant realization. We have the opportunity as parents to demonstrate our love in an entirely supportive way, more as a coach than as a leader. I have shown her my dedication to managing cystic fibrosis by never missing treatments, by attending all her clinic visits and by being her advocate in the seven years since her diagnosis. It is now time for me to allow her to become the expert. 

CF constantly reminds me how little I know. In this moment before she finds her way back to the waiting room, I finally realize my role: to support my daughter on her journey, living with a chronic disease. That role will constantly evolve as she grows. Sometimes it is hard to keep up with how quickly she advances. Sometimes I think that she needs me more than she does. Sometimes I want her to need me. 

Seeing her come out of the clinic room, full of pride, brought immediate clarity to what it is going to take to raise a healthy and happy individual living with such a complex chronic disease. Empowerment. We all want to be an expert, to be revered, to be seen as capable. I look back at all the steps toward independence that Maylie has taken since her diagnosis, and I am certain that she is ready for this transition into self-care. She cannot wipe the smile off her face. She is an expert in her own life. Finally.

Teaching Through Example

Originally Posted on www.cff.org on October 23, 2015

The morning started like most mornings. I hide under the covers in painful denial of the choice that I must make: getting up and exercising. I am acutely aware of the countless benefits, both physically and psychologically, yet the covers and the comfort of my bed often win. The sound that finally brings me upright is the familiar series of coughs from the bedroom next to mine.

It shakes my body to the core, reminding me that even on Christmas morning, cystic fibrosis does not take a break. She wakes up with a smile, looks at me with those beautiful blue eyes begging for reprieve and says, “Momma -- it's Christmas, do I have to do treatment today?” I gave her the same rote response that always follows this type of question. I envelope her in a hug, and when I pull back she looks at me with the sincere naivety of a child. A small tear falls down her face as she says, “I know, but it's not fair because no one else in our family has to do something every day.” She runs upstairs, and I sit with my own tears and emotions for a moment.

I start thinking about the beautiful view that carries me along the run at my parent's house on Flathead Lake. Motivated by the view swirling in my head, I decide to put on my much-neglected running shoes to clear my head. I immediately feel the cold penetrate my lungs: tight and uncomfortable. My shoes hit the icy pavement with rhythm and steadfastness. I decide where to turn around based on the reward of viewing the overlook of the cherry orchard with the lake spanning the eye's view. As I run up and down the hills along the lake, I think of nothing other than my daughter's comment to me.

I have spent many days trying to impart my commitment to her in her fight with CF but, in the end, she feels that she is the only one sacrificing. My heart aches with grief that she feels so alone. So I make a decision, and just not a New Year's resolution that will be fickle and will eventually fade. I make a commitment to my daughter, my hero. I will be her role model. I will become her partner in her fight against CF. I will exercise every day, not because I want to, but as a testament to my daughter and the hurdles in her life. I take a moment to reprimand myself for forgetting the importance of teaching through example. Then, I focus on change. Any time my adherence waivers, I will look to her commitment and it will be my new motivation. She gets no days off, has no immediate rewards and yet day in, day out, she follows the treatment plan that has been chosen for her.

I pick up my pace as I am about to reach the top of the final hill and the view that awaits me. As I arrive, my heart sinks. The fog still hovers over the lake and orchard, and all I can see is the fence surrounding the apple trees. I want to stop and cry at this reward that I cannot claim. I immediately realize that this anticlimactic end is more common than not for my daughter. She often sees the course that lies ahead, but then something, like a bacterium, is introduced and additional treatments are thrown at her. More antibiotics and GI distress follow, and doctor's appointments take over where play dates should be.

Today marks the first day of the rest of my life. And I will use it to encourage and lead my hero through the foggy views that lie ahead.

My Small War Against the Feeding Tube

Originally Published on www.cff.org on September 10, 2015

Her shoulder blades protrude, and I can see the outline of her ribs as she puts on her PJs. I am now acutely aware of what awaits me tomorrow in the clinic.  The scale reprimands me before the team even has a chance to get a word in. Nourishing your child is a very basic instinct, and I am overwhelmed with feelings of failure.

Lung clearance is hard. Intravenous antibiotics are hard. Food is not supposed to be hard. That is why the emotions are so encompassing. However, the verity is that malabsorption is as much a part of this disease as bronchiectasis. What stops us from acknowledging the disease's role in this particular hurdle?

The war rages within me with each meal, each snack, and each high calorie shake mix that I begrudgingly serve her. I know that Maylie is fighting a war within her body each and every day.

Each time I choose processed/high sugar foods to appease the numbers, I feel like I give the other side ammunition against my daughter. I stand here looking at a little girl that is doing everything within her power to fight CF every day, and my job is simply to support her. 

A couple years ago, I attended the CF Foundation social worker/dietitian consortium where I listened to case study after case study presenting statistical evidence to support the correlation between BMI and lung function. I had heard parts of the same story so many times before, but it was in a setting that begged me to recognize the gravity of a situation I wanted to ignore. 

Unfortunately, I spent Maylie's first three years in a state of misguided defiance. I would go to clinic prepared to defend my efforts as a mother. Unbeknownst to me, that was never in question. Failure to thrive is an extremely personal and emotional diagnosis, and one that gives you a false sense of control. Everything changed once I acknowledged that Maylie's need for a feeding tube was as disease-specific as her need for Pulmozyme. I was free from the guilt that blinded me all those years. Why do we see nutrition intervention as a reflection of our own failures?

Once the decision was made to follow through with the feeding tube, relief consumed me. This small war was over; I could stop fighting the tube.

Maylie has had her tube for almost four years, and while it comes with another set of demands and a few complications, it was one of the greatest tools that we have implemented into her CF care. If your team has discussed the tube with you, I encourage you to embrace the chance to have another weapon to fight CF. See it as a step up, not a step down.

Finding My Strength

Originally Published on www.wish.org on June 24, 2016

My eyes flood, vision lost. My heart cries, emotions are swirling through my head like the blizzard that is enveloping our car. How can there be more? The strength that once resided in my spirit seems forever broken. The idea of resilience seems like a cruel pun, a reality for others, but not for our family.  How can we continue to break and not be broken? 

A life full of medications and nebulizers now has to share cupboard space with blood glucose monitors, syringes and a sharps container. I grapple with the notion that my daughter and I are more medical partners than a family. I embrace the fear and anger allowing myself to live in the deafening space of purgatory, begging for acceptance yet wallowing in overwhelming resentment. I plead for quick resolve- to find my place, wherever that may be in this new reality.

I swim in this expansive lake of self pity. Trying to hide behind my driver's seat, acutely aware that soon she will see my tears and question their origination. I take a brief respite from my outward strength, to feel, truly feel the unfairness of her life. Cystic fibrosis, asthma, peripheral neuropathy and now CF-related diabetes, or CRFD.  I break down, I sob, quietly. 

I look to Maylie in the back seat singing along to her music, oblivious to the implications of what we just learned. I see my reflection in her naïve eyes – sorrow and grief, a weak demonstration of what I hope for her. Since Mays diagnosis I have worn a costume of strength and resilience, it often feels like an act, but it keeps me from sinking into a life that I am unwilling to live.

Her life, already abbreviated by CF, has just been unequivocally abridged even further by CFRD. So many new worries, hurdles and complications. I sit with this feeling, remembering the last time I felt so alone, so helpless and it brings me back to her original diagnosis. I feel my mind sink into a state of idling. I suddenly realize the hypocritical nature of my thoughts. I have struggled endlessly to teach Maylie about her opportunity to see light in the darkness, and here I sit completely betraying all that I have spoken. I remind myself that despite our moments of difficulty, we have had countless blessings in our life albeit CF, dare I say, possibly due to CF.  

I find a recognizable version of myself, one of strength and persistence. I feel the fighter in me begin to take hold again, recognizing that there are two ways in which to traverse the days ahead. One is to allow these harrowing moments to consume me, break my spirit, and eventually my soul; allowing grief and fear to take over where happiness and dreams once lived. The other path is one that begs me to be present in the most difficult place....to realize that sadness will not change her diagnoses, it will only burden our life more, eventually stealing all the moments in between, giving CF even more control than it deserves. I resolve to tackle this with the same strength that I beg of her, one that does not live too far in the future and that captures all the moments in between and focuses on that as our defining diagnosis. Being alive.

It has now been almost two months since that day. There are still moments of sadness, but they are overtaken by the realization that our life is good, Maylie is gaining weight from the insulin and she has made it through the worst part of the cold season without oral antibiotics, so maybe as all things in this life, CFRD was not as scary as it seemed on that snowy day in February. 

I write these thoughts now to remind my future self that no matter the hurdles, no matter the outcome all that matters are how we spend those moments in between. Being alive.