Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Tuesday, January 29, 2013

For when I am weak, I am strong....

"But He gives a greater grace. Therefore itsays, "God is opposed to the proud, but gives grace to the humble." James 4:6. 

I'm not a big 'scripture person", meaning I don't necessarily memorize or quote scripture but of course am familiar with passages and gospel stories and am reminded of them in so many area's of life, in the everyday.  God uses whatever means He needs to to speak to us- sometimes in the voice of our children, in the eyes of a small child, in the cry of a wounded soul, in the wake of tragedy are the times we are listening most for His voice-but He is always there.  I learned this as a small child, something my dear grandmother taught through her example. And it was impressionable on me. It was a gift-directly given from her but indirectly given from God....He knew I would need this gift.   

I came across this post today, "When you give up, and you break, you've made it.",from A Holy Experience on the heels of my last post trying to express what it feels like to be filled with graces, the graces to sustain, the graces to see the works before me, the graces to appreciate the painful days and even more so the graces to be so grateful and humble for the so.very.many.blessings.  

These words from the (above) post...."But here comes the upside, the so unbelievably bright side: when you are just done, and broken, and tired, you’ve made it.

You are now about to experience the most profound, amazing, life-altering, freedom and grace that will set you so free you are going to fly.

I mean it.

I mean it.

When you are broken enough and tired enough and angry enough that you just can’t mold yourself, fix yourself, do better, be better, when you are just done, grace is lavished on you like nothing you’ve ever experienced."

Wow. Wow. Read more, trust me.  Let the words wash over you.   

The title of the post isn't what grabbed my attention though.  I don't feel like I've given up- or that I am ready to.....but that doesn't mean I don't think about it when I am weak, or broken, or learning. 

What grabbed my attention in this post,was the first words...‘"I don’t want to be a servant –I want to be a Caroline.” So says the three year old wonder-child who humbles me as a parent and makes me think deeper about life."

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. 

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