The "unknown" sometimes places me in a kind of allegorical darkness. Six years and some odd months ago, we entered an unknown. Today some of the emotional turmoil is relived as my mom enters the world of tubie feedings.
It can be so easy for a medical professional to reason out the need for a tube. And place it. Period. And that medical professional is truly doing right as best as he or she can define it. But when the intended use is defined as "short-term" the patient and caregiver are suddenly submerged in a reality clash. Who helps us move from A to B. How does one get from tube feeder to oral feeder. So simple a question. So complex a reality. One highly qualified therapist said, "Hunger is an elusive beast, at best". I can personally atest to the truth in that statement. A mom of a former tube feeder explained that a child cannot develop oral feeding without an internal motivator. The motivator she names? Hunger. So it becomes a monster hunt! How to trap the elusive beast without irreversably affecting the life and health of the subject at hand!? How safe must we play? How far can we go? Who is qualified to direct this symphony, to orchestrate all the players, and to set the rhythm?
These are the questions bouncing around in my tortured brain today. For my child "short-term" has been six years and counting. The medical professional who knew best for my precious infant will never know how the rest of the story goes. She is isolated in the NICU world giving no followup for her decision. Was she wrong? Was she right? I honestly do not know for certain. Pondering it will only drive me mad. The past is behind us. We must press on ahead. We must fight the good fight. We will finish this race. But......how many more years will it take?
Mom has been plundged into intimate knowledge of this dilema. Previous oral experience is on her side, for that, I am greatful! Lack of hunger is a persistant struggle. The medical professional told me, when I tried to question her about concrete support for mom in the transition from tube to mouth (and I quote), "...hopefully over time she will start eating". I hope so too! However my hope most certainly is not based on this uncomforting non-answer. I choose to BELIVE it will be so. This, because I believe in Father God, who helps and heals. In His own way. In HIS OWN TIME.
