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.



Kat PorcoComment