Healing One Wound, Opening Another

There is no greater instinct than a mother's need to protect, and I have had to willfully disregard it countless times in my journey with CF.

| 4 min read
Kat-Quinn-headshot
Kat Quinn
Kat-Quinn-May-Bed

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 9 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.

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Maylie's cynicism for me is grounded in experience. Reality is harrowing for her. 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.

Someday she will understand my motivation, but today she does not. 

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.

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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. And for that I am strong. We are strong.

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Almost a month has passed, but the pain of that day never subsides. Nor does the fear of the next procedure, because another one is always looming in the distance. I have begun to question my role in her care. I feel unnervingly apprehensive. What if my perceived strength is, in fact, unnecessary? What if I could be the calm within her storm rather than another funnel cloud hovering over her bed? I recognize in this moment that a better option exists; I will search indefatigably until I find it.

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Topics
Parents & Guardians | Hospitalization
Kat-Quinn-headshot

Kat founded the Blooming Rose Foundation (BRF) when her eldest daughter was diagnosed with CF six years ago. The BRF was designed to empower parents whose children have been newly diagnosed with cystic fibrosis. She has served as a communication consultant to teams and advisory boards of numerous pharmaceutical companies as they develop education and empowerment tools for the community. She holds a M.S. in health communication from Boston University and a B.S.W. from Humboldt State University.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.