Mothers to the Handicapped

One of the lessons I was taught while early in my career, was to trust the knowledge of family members who care for a loved one who is handicapped. While in my Pediatric ICU rotation at CHOP (Children’s Hospital of Philadelphia), my preceptor showed me over and over that families, mothers in particular, knew their children’s needs, and how to care for them better than any nurse ever could.

These children had disorders and birth defects which affected multiple body systems. They needed trach care, feeds through G-Tubes and medicines I had never heard of. There were contraptions, tubes and procedures I had never been exposed to.

Her lesson: “Ask, ask, ask the parents. They know more than you do and are more than willing to teach you.”

In fact, these parents were almost palpably relieved when I didn’t go in as many nurses must have, with a sense of superiority, flaunting a nursing degree.

This lesson came back to me on a recent flight. A small child had multiple birth defects and a long surgical and medical history. She was incredibly sick and needed us to get her to the children’s hospital in our area. I spent most of the time before take off asking her specifics like, what was the best way to bolus fluids through her g-tube? What the most effective way to suction her was and how she normally responded to each of things? I had her mother help me with her car seat and in between took the time to talk to the baby: she shares a name with one of my nieces.

Never once was this angel of a mom irritated with my questions. She had to trust me with the life of her child whom she has dedicated every waking moment to giving extraordinary amounts of love and care to. I was taking that control from her, when she knows no one knows her child like she does.

It is no wonder that nurses are the most trusted profession year after year. We have to be.

Just remember, always ask, ask, ask.

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