My Journey as a Nurse and a Mother of a Child Who Lives with Cystic Fibrosis

By Guest Blogger, Julia Everett

I distinctly remember sitting in my pediatric nursing class going over genetic autosomal recessive diseases, the most common being cystic fibrosis.

I remember sitting at the desk in the gym where I had my college work-study position memorizing fat-soluble vitamins those with cystic fibrosis have a hard time absorbing. I remember looking down into the basketball court of the gym repeating, “A-D-E-K.” I remember doing this as a means to an end: to ace the test.

I remember that that very test was near the time when we were preparing for my college’s “Dance Marathon”. This marathon raised (and still does) money for the large children’s hospital in our state by holding fundraisers throughout the academic year and culminates in a large dance party at the end. The marathon features testimonies from families who have children with various medical conditions and who benefit from the care the hospital provides. I remember being overcome with emotion listening to some of those stories.

But it never really crossed my mind that I could be one of those very families.

Fast-forward a few years. I was working as a nurse in a Labor & Delivery unit in a very large hospital system. The unit delivered around 4,000 babies a year, so it was a very busy but incredibly fulfilling job. I loved being able to help women bring life into the world and loved being surrounded by some of the best medical professionals in the nation.

When I became pregnant, I did not think twice about potential diagnoses or complications. That was, until I had my anatomy scan.

I received a phone call while I was at break at work asking me to come in for a second scan, but this time with an MFM—a maternal-fetal medicine doctor who specializes in diagnosis and care for babies in utero. I immediately asked one of the residents I worked with what they thought but we both agreed that it was likely nothing.

That is what I think happens to many of us who are faced with a potential diagnosis, no matter what it is. Our minds try to ease the potential pain we might face by convincing ourselves that there is no way that there is something wrong. I knew logically that prenatal diagnoses happen to other people—I saw it often.

But to me? No way.

That is the funny thing about life, struggles that others face seems so abstract and distant that the reality of it happening to you seems improbable. Until it does.

Soon after the second scan, it become clear that that our baby likely had cystic fibrosis. I immediately thought back to that test when I learned about the abstract disease that I had zero experience with, and it become all too obvious that that distant concept was now going to become my family’s reality.

As with any diagnosis, the first thing that comes to mind is “How am I going to deal with this?” When our daughter was born, she had a number of medical complications that led her to being in the NICU for over 40 days. I remember sitting in the NICU and grappling with the concept that I was now on the patient side.

I was no longer the medical professional helping the family in the room; I was the family being helped.

I struggled big time at first with this shift and did not know how to come to accept or grasp this change in dynamic. I knew how to research and learn about various disease processes. I knew how to explain the physiology behind a condition and the various treatments.

But there is a difference between what you read about a disease and having someone you love more than you could ever imagine diagnosed with it.

Little did I know at that time that the person in front of me, my daughter, would be one of the most positive things that would happen in my life. I think that many of us parents who have a child with special needs first begin the journey with, “How?” or, “Why?” But as time goes on, we experience a shift: we realize that it not about us.

It is about the child’s life that we have been entrusted with, the little human who is in front of us.

This isn’t to say that the fear, frustration, and fatigue many of us feel early on are invalid, or that these emotions will completely dissipate over time. We will always be on an emotional journey that ebbs and flows along with the clinical journey. But over time, we make it work.

When we set off on the “non-average” life with our children, we are given the task of helping them on their journey of life. We walk with them through the challenges, we cry with them and would trade places with them at a moments notice, we struggle with how their peers or society will accept them.

But we also get the elation of sharing in the excitement of reaching milestones that to some seem a given. Depending on the diagnosis, we get to share in the thankfulness of a clean bill of health or the often taken for granted ability for children to speak or to say “I love you.”

So when they do meet these achievements, we relish that moment. We are in a secret society of sorts that understands that nothing is given and so every moment is appreciated and the value of simple things is not underestimated.

And over time, we recognize that we as parents have been given a gift.

In the beginning when so much fear around the diagnosis was at the surface, I could have never imagined what joy lay ahead.

The joy of being the mother to a sweet blonde-haired, blue-eyed girl who is full of life; a little girl who loves to nurture and care for others, who loves her brother with a deep sense of devotion and pride.

A little girl who is empathetic and loves to dress up like Anna from Frozen, who loves to eat corn on the cob and the color pink.

A little girl who is empathetic and compassionate- who will stop what she is doing if she senses someone is feeling down and do her best to comfort them.

My eyes were quickly opened to the fact that all the googling in the world or reading countless studies could never encompass the person behind the diagnosis. This is something I knew logically, but to live the experience forced my perspective to change drastically and my empathy to develop significantly.

As we continue on this journey, I continue to change as a mother and a nurse. In my practice as a nurse, I am more patient. It is not about the task at hand but the person in front of me. I understand at a much greater depth the trepidation in trying a new treatment option or how trust is hard to gain back if a person has had a bad medical experience.

I try to always see the person in front of me and understand that even when their path is very different than mine, the priority is first to serve them as an individual and by doing that, I help them medically in the process.

In my role as a mother, I am a mother first. I comfort, protect, and advocate for my daughter. It is hard to disentangle the two roles at times. Sometimes knowing about something and the potential outcomes can cause anxiety. But I have realized that similar to how understanding a disease is very different than knowing the person, there is no specific path in any diagnosis.

There are always breakthroughs and medications that all of the current knowledge could never account for as we are constantly improving, increasing understanding, and making achievements in the scientific world that once seemed impossible.

And that is the single most important lesson when faced with a diagnosis: the ability to have hope and maintain hope.

I am a planner and love to think days, weeks, and even years in advance. However, my daughter’s life has taught me the value of living in the moment and enjoying the beauty of each day.

I could have never fathomed when I was studying that day back in college, that I was being prepared for the most challenging and yet the greatest and most rewarding gift that would ever be given to me. I would have never dreamed that it would be my family who now stands up on that stage for the Dance Marathon to give a testimony.

Yet, I would not have it any other way. It is certainly true that we never know what lies ahead. But so much of life comes down to optics. When we shift our perspective and force ourselves to change the way we see things, our lives become a font that overflows with joy.