My parents were blessed with 4 children, myself including. I was sandwiched in the middle of two older brothers and one younger. We had our typical normal challenges throughout life as any family does, but in addition, my older brother closest in age to me by 25 months was born as a “blue baby” with complex univentricular congenital heart disease and not expected to live beyond the age of 1-2 years of age. He required numerous encounters with the health care community through the years (shunted in early youth and Fontan in his teens) and is currently battling for a chance to live a quality of life outside the walls of a hospital waiting for cardiac transplant.
This memoir will highlight one family’s positive spirit, resiliency, and journey from a younger sibling’s perspective (now 44 years old), who incidentally happens to have chosen a career specialty in pediatric nursing with experience as a bedside nurse in the ICU and pediatric nurse practitioner in cardiology and cardiovascular surgery.
TABLE OF CONTENTS:
1. Let the journey begin…
This blog highlights the logistics of why this story is pertinent to pursue. CHD is the number one birth defect. Our family was one of the many family impacted and intend to share my story about challenges, strengths, and resiliency given the resources at the table through the years. The inspirational journey is not always positive but hope was and is an ever present theme to this day.
2. Future Nurse: Caring starts at a young age
This section identifies how the nursing profession and caring was introduced to me through play, health care experiences, and normal family life transitions. With time, thoughtful engagement, encouragement, and modeling, this profession became a top career path on my journey.
3. My transition through adulthood
Certainly where most of the “meat~if you will” of the journey is present by shear nature of years and typical developmental milestones and traditions. In a not always sequential fashion, you will travel through the years with significant milestones and reflections of the journey (past and present). Focus on incorporating normal growth and developmental infant, toddler, school-age, teen years, young adult, college, and early family and nursing career with be discussed.
4. My transition in nursing from novice to expert
This blog series will highlight the journey from nursing assistant, student nurse, graduate nurse, registered nurse and pediatric nurse practitioner (AC/PC). Many role changes, challenges, and insightful paths will be highlighted along the way.
5. Caregiver fatigue
Caring for yourself on the journey of life is not a novelty; however, this is certainly a pertinent data point that is essential in the profession of nursing, lives of families, and quite often ignored by women. You will hear about my experience identifying it and healing the mind, body, and soul.
6. Celebrating life’s triumphs and challenges
The specialty field of pediatric cardiology and cardiovascular surgery have grown astronomically through the years. Hospital guidelines for sibling and family visits have gone full circle since I was a child navigating the system with my parents. Today, extensive education for the child, parent, and even involving the healthy siblings are included in the process much earlier in time. As a result, families are arriving to the table prenatally and beyond with a much stronger knowledge base at the beginning of the journey.
As with many health diseases, CHD presented struggles and issues certainly presented to the table, needed to be addressed in order to cope with in our family. The intent at conclusion of this blog will stem from recognizing that we have a choice to think positively, thoughtfully, and move forward utilizing these strengths no matter what the variables surface. Moving forward for the betterment of health in all children and families, openness of the mind, willingness to believe, and willingness to share thoughtful and transferrable resolutions among centers and strong families are essential to continue to foster conversations positive throughout the journey.