“Nothing in life is to be feared. It is only to be understood.” Marie Curie
“Mommy, what’s happens if there is a fire in the night and the fireman doesn’t know how to unhook me from my pump?” Compassion rose to my throat and I took my son into my arms. “Sweetheart, that is such a good question.”
My next response was a pat answer about how they would figure it out and that they would probably take him pump and all. Then I pictured the safe guards I had initiated to secure the lines filled with glucose for a sleeping, dreaming, rolling four year old. Tape on the connection between his tube and the main line. Tape on the bed posts to prevent the tubing from pulling the pump off the dresser. His Dr. Denton’s sleeper with their custom button hole added near the ankle at the bottom of the zipper where I snaked the tube to meet his G-tube. He had thought of a safeguard I had not.
The little boy may not know from were this fear sprung (http://www.health.harvard.edu/newsweek/Childrens_fears_and_anxieties.htm) or that the word “fireman” was not politically correct, but he understood the permanence of his nightly infusion. Never a night passed without the ritual of connecting his gastrostomy to a long line of green tubing and his personal Folkman pump.
The next week my son and I had an appointment with the Fire Chief. We told him where we lived, the basics about glycogen storage disease and the life sustaining nature of his night time infusion. We took supplies to demonstrate how to disconnect and secure his G-tube. Written details were given to this caring man in uniform who time proved would never need to preform the duties. In addition, the chief put our home on a registry that guaranteed if the city lost electricity our home would be a priority. Brief, simple and important.
Lesson Learned: A child trusts you to keep him safe.
GSD Family Times 