She touches his shoulder, urging him to move and respond to my assessment. My 13 year old patient has cerebral palsy and is blind from septo-optic dysplasia, two congenital conditions that developed during his fetal life and have inhibited him from developing into a fully functional child. He actually is missing the midline of his brain and therefore has pituitary insufficiency and Addison’s disease, further complicating his dependence on medicine and the devoted attention of a loving family to continue with his life.
This is my first pediatric patient at my rotation at Children’s Hospital in Oakland, and the amount of care I must invest in him is more demanding than the renal and liver patients that I had formerly cared for at UCSF medical center. Communication is a challenge since he is developmentally delayed and only really responds to the familiar voice of his mother. I find myself spending large blocks of time in his room to monitor his breathing and apply suctioning since he has been admitted to the hospital for a pneumonia complication.
As I take his temperature he bites on the thermometer with a canine grip. Medicine is fed in applesauce only to be spit up. His IV has infiltrated because he moves his arms in jerky, spasmodic action.
In each action I conduct his mother is right there at my side, assisting in some way. I come to realize that she is just as much my patient as he is, for she is entwined with him. He left her womb developmentally delayed 13 years ago, but he never let go his dependence on her and she has accepted this as her call to motherhood. As I gaze upon her, I can see in her eyes a sadness, a sadness towards this charge she has born and carries. I wonder if those eyes mask regret.
There is a nobility to her acceptance, her love. But none of the world’s nobility can mask the weary sadness she bears within.
