My 3yr.old humbles me as a parent, too. Last week, I was working on an article, and decided to also do a slideshow to illustrate along with the article (I love pictures!) for Feeding Tube Awareness Week 2013. Little Man was watching the video with me, as I edited it. We came to this picture:
And, he said- "mom, what's this" (pointing to the heart). I said, "it's a heart". He said, "no, this" (pointed to the same place). I said, "it's your feeding tube but inside is the heart, do you see it?". He said, "no, that's not a heart- that is a kiss".
Almost a year ago, he had that tube placed. Although I would say it was love- a symbol of love, of tough love at that time, but of love; I would not have said it was a kiss. Today, through a multitude of graces, I know it is. A kiss from an angel. A bridge to saving his life, to restoring health and quality of life in our little man. A way to get nutrients, medications, hydration in without constant chronic inflammatory reactions.
What strikes me from this post (above) is the first lines and how my own 3yr.old said those very words to me just yesterday. "I am not a supertubie, I am Sam.....I have a tube, see- right here (lifting his shirt and pointing to his gastric tube). My tube is super. I am Sam".
Feeding Tube Awareness Foundation put a lot of thought into the Tubie logo, and it has amazing symbolism needed to bring compassion, understanding, empathy and most importantly, awareness to medically necessary feeding tubes. The word tubie in the logo was coined (and the logo trademarked by Feeding Tube Awareness Foundation) to bring the "human" to the tube (in the words from Feeding Tube Awareness Founder for this awareness article on Complex Child EMagazine) "...logo embodies what we are trying to do. Re-position tube feeding from something that is scary, icky and complicated to something that is friendly, approachable and beneficial--when it is medically necessary...... is why we chose the term "tubie" over something more clinical like "enteral feeding." Words matter in communications..... The emotional connection is important, too. It needs to be personalized. The heart is pure tubie love."
Beautiful. I thank Feeding Tube Awareness for this logo, this symbol of love.
But in this instance, in a time when my mind is struggling with this chronic illness and the up and down effects on the quality of life of our family; it was simple words from a 3yr.old that reminded me of the importance of not naming the illness of a person. The illness is not a person, the person has an illness. The illness doesn't define the person, the person defines the illness. Sam is a child with a severe food allergy of the gastrointestinal system, he has FPIES. He is a child with FPIES. He is not an FPIES child. Can you hear the difference? Medical Sociology 101: Do not define a person by their chronic illness. Do not let a chronic illness define a person. The medical field relies on the definitions and naming of an illness is to allow understanding of common symptoms, and to help define the illness by grouping symptoms. However, in so doing, we risk taking out the individualism. That very individualism that is needed in a complex subset of symptoms that ties together a syndrome called FPIES.