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Jun 24, 2016

CF Challenges a Mom to Stay Strong

kat quinn cystic fibrosis maylie make-a-wish
Guest blogger Kat shares her memories of the trying day that her daughter, Maylie, faced other challenges in addition to cystic fibrosis. She tells of an internal struggle – trying to model the ideal behavior in the face of adversity, while also managing her despair as the parent of a medically fragile child.

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? 

kat quinn cystic fibrosis maylie make-a-wishA 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. 

kat quinn cystic fibrosis maylie make-a-wishI 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.  

kat quinn cystic fibrosis maylie make-a-wishI 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 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.

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. Kat is a Duke-trained integrative health coach, she holds an M.S. in health communication from Boston University and a B.S.W. from Humboldt State University.

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June 25, 2012 - 11:25 AM

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