Tuesday, May 19, 2015

An “Incomplete Child” took the first step and became a nurse


 
Susie Cutino Pratt, RN, BSN, MPS

 

    
      Having a physical disability as a nurse can be an everyday struggle. I often speak to student nurses who question, even doubt, their potential as nurses because of their own physical issues. I
want to empower more student nurses to find their place in the most rewarding career of a lifetime— empower them just like my mother empowered me.


When God created you he did not finish his product. He gave you problems that sometimes I blame myself for. I often wonder do you curse me for having you? Are you angry at me?”

“This may sound strange coming from your mother but I have always carried this feeling within me. All the years of your growing up, I prayed. We went to so many different doctors, always looking for the perfect answer for you. But to no avail, every new method of doing a new procedure we tired. …The problem with you brought daddy and I together--as close as anyone could be. All we lived for was for you--to make you stronger health wise and mentally. You grew into a beautiful young woman with great traits toward people and a lot of heart. School was never easy for you but you worked at it until you got what you wanted. Your Dad and I tried talking you out of nursing, feeling it was too hard a life for you, but you fought us proudly and became a nurse, which was one of the happiest moments in my life.”
 

     My mother wrote these words in 1996. I only read the title, “One Incomplete Child,” and put the letter away for another day. Since then, both my parents passed away. I write about this letter today because it has more meaning now. While working on a paper for a nursing theory class, “The Theory of Chronic Sorrow,” my eyes were opened. The theory explains how parents of children who have a physical or mental disability struggle to cope with loss of a “perfect child” (Eakes, Burke, Hainsworth, 1998).
 
     My mom struggled all of her adult life with her loss of the perfect child. I was the child with the physical disability. She titled her letter “One Incomplete Child,” which explains her own chronic sorrow she experienced having me. Sadly, we never had a chance to talk about the letter before she died. I never knew she blamed herself for my condition. We were so close and yet she never discussed her feelings. Her feeling of considering me being an incomplete child was so overwhelming when I read the letter, I cried.

  
     When I was born, my parents were told that I had a congenital defect called spina bifida. Later, through genetic counseling, I was told my true diagnosis was caudal regression anomaly, specifically sacral agenesis. This is a neural tube defect, which prevents the development of a sacrum or coccyx. Having no sacrum or coccyx caused weakness of my lower extremities. My mom wrote how hard it was for her and my dad to raise a child with physical disabilities. I had many physical problems growing up, but the encouragement and reassurance from the people around me gave me the will to go on.

  
     Besides my parents, nurses gave me lots of encouragement. I was always in and out of hospitals for one reason or another but the nurses at the hospital were always compassionate,
supportive and reassuring.

      I think this is the reason I so wanted to become a nurse. To give encouragement, support and inspiration to others who have physical disabilities. After reading the letter, I now know how
hard it was for my parents to understand why I pursued a nursing career.
 
I never considered myself “One Incomplete Child”, as my mom wrote, until I went to college. Until then, I was always part of the “normal” world. A professor at Long Island University developed a program for students with disabilities… Students had cerebral palsy, spina bifida and many other disabilities, but each one had the same goal in mind: to go to college.

When I told a professor that I wanted to become a nurse, he made an appointment for me to meet with the director of the nursing department. At the end of the interview, I was shocked when the director asked me to walk for her. This was well before the American with Disabilities Act was passed. Apparently, she wanted to see if I could walk fast enough to help someone in an emergency.

For the first time in my life, I felt like I was an “incomplete child.” This feeling of incompleteness made me more determined to become a nurse. It gave me greater strength and determination to follow my dream. I overcame many obstacles in my life but each one made me stronger and more confident in my professional nursing career. This made me even more determined to continue my education and become a nurse educator.

I’ve been a nurse for more than 30 years. Over the years, I have held many different positions. When I interviewed for jobs, management never questioned me about whether or not I could handle the physical demands of the position. Every opportunity seemed to open a door for another successful step in my nursing career path. Currently, I teach practical nursing students, a position I have held for 10 years.

I look back now on my remarkable career and realize that the most important step was the one I took some 30 years ago for the director of Long Island University’s Nursing School.

 …………………………………………………………………………………..

Did you take the first step? Or, are you struggling with taking the first step?  Have others thought you were “incomplete”?

Please drop a comment below. Love to hear from you!

Eakes, G., Burke, M. & Hainsworth, M. (1998). Middle-range theory of chronic sorrow. Journal of Nursing Scholarship, 30(2), 179–184.


Read more about Susie Cutino Pratt’s  journey in “The Exceptional Nurse: Tales from the trenches of truly resilient nurses working with disabilities”.