I have always wanted to give to other children and parents the support and guidance that my family and I didn't receive when I was a little girl. We learned that at five years of age, I had a congenital, potentially life-threatening illness.  And so I write this story for you. 

It all began in kindergarten when my pediatrician found that my spleen was enlarged.  Of course I didn't even know what a spleen was! After a few tests and a few days in the local hospital, I was transferred to the Boston Floating Hospital, 60 miles from my home. 

I remember that it was sort of exciting - getting all of this "special" attention from these big people - nurses and doctors - and being treated extra nice by my parents and older sisters.  I was a little scared too, but I found out that when I didn't cry, everyone  praised me for being such a brave little girl. Not  wanting to let all of these people down, I learned the part I must play. I knew that my parents were scared, though they tried not to show it, and I didn't want to add to their stress, so I became "the perfect patient"...on the outside!. I was on a unit with other children, many of whom were very ill. Parents were not allowed to room-in, but then again, even if they had been allowed, my Mom and Dad  had three other children at home. 

I was alone and frightened to my bones by all of the sights and sounds. I seemed so much healthier than the other children, not having any outwards signs of illness. When they didn't do well I became scared, and I didn't know how to talk about it. I was so mixed up, sometimes feeling relieved, fortunate and guilty, all at the same time.  One of the first nights in the hospital, I wet my bed, not knowing how to get out of it with the railing ups, and not knowing how to get the nurse's attention way down the hall - I was very embarrassed, and I remember that the nurse was upset with me. 

One morning I was awakened very early, when it was still dark, and given some special medicine.  Then I was taken on a stretcher through a dark tunnel into the bowels of the building... to a spot outside an operating room.  I was never told about the procedure and I was never told what would be happening to me. Imagine my fear when I was strapped  to a table. The nurses and doctors told me not to move or I might get hurt. Imagine.  I was awake, six-years old, and all by myself. Even though there were lots of people in the room, I didn't know a single one of them, and I felt so alone. 

I was diagnosed with congenital polycystic kidney disease and related hepatic fibrosis and thrombocytopenia.  Big words, and I had many questions...but received  few answers. How long would I live? How sick would I be? This uncertainty was so very difficult for me. Questions of a little girl who wore a cloak of confusion that nobody could remove.

All of the things that I was not allowed to do after coming home reminded me that I was "different". One doctor told my parents that I shouldn't ride a bike or participate in contact sports - so I was the oddball in gym class. On the home front, I was the outcast.  Two of my sisters were very jealous of the attention and special favors bestowed upon me.  I loved the special treatment, and I hated it.  My sisters  were so mean to me, and I couldn't figure out if it was because of something I did or if it was because of the special treatment I received. Whatever it was, it changed the way I related to my friends - with suspicion and fear and with a deep need for their approval and acceptance. 

My relationship with my father also suffered.  As a child, I figured that he didn't like me. As an adult, I grew to understand this emotional distance....he was afraid he was going to lose me, and he didn't want to get too close.  He needed help in dealing with his fears, but he never got it.  No one ever understood what was happening.  My mother and I grew very close, but she spoiled me in her attempt to "make up" for all I had suffered. It was not good for me. I still occasionally behave like a spoiled child - I know I loved it at the time, and  I know that it probably helped ease her pain and guilt, but it was a real handicap for me.  She needed help in dealing with her feelings about how to raise me, but there was no one there for her to go to. 

I was a "brave little soldier", and at home there was no talk about the hospital, about death and dying, about all the things that had scared me, about all the things unsaid or unanswered about my future.   Perhaps if I had exorcised those demons, they wouldn't have stayed with me until this day, Now I'm 33, and only now  am I beginning to realize the powerful effect that my illness has had on my life.

After a very rocky adolescence, and an angry and unhealthy adolescence,  I made a decision that I *would* have a future after all, and that I'd better treat myself and those in my world with a different attitude. And so the world changed for me. I went to college, and surprise, surprise, got pregnant. You can guess what a high risk, scary pregnancy I had. I was at once petrified and overjoyed at the prospect of having my own baby. And I did! Ben is seven years old now, and is doing great!

Illness is scary - it threatens every child's chance for a normal, happy life.  It creeps in and changes life in so many ways.  I know now that it can be a gift, an opportunity for growth and clarity about the preciousness of life. But it can only be so when help is available for children like me and families like mine.

This year I was named "The Young Health Care Executive of the Year" in Rhode Island.  - pretty cool, huh?  It feels like I have come full circle, and though my illness is still with me,  I deal with it differently now. I have the supports I need outside, the quiet spirit of love inside, and a zest for life that directs each day. 


 To the frog ponds
 To more adult stories
 To the site map

Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: November 14, 2004