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."

Sunday, March 27, 2011


As we await more interpretation of results from Dr.J, with words like "genetic variation...some systems causing aberrant responses...overall innate immune responses are a little suppressed...atypical FPIES results....not surprising..." floating around in my head of initial interpretation of the results.  I know these mean complexities are in store....but we already know he is complex.  Putting the terms (and possible additional diagnosis') to what we already know is going on in his body, actually gives me more peace....more resolve.  We know there is more to his FPIES, our GI calls it atypical FPIES, another GI we saw in consult last fall called it "FPIES plus", we know there is more going on- but what is it.  

I came across this story the other day, and wanted to share seems like a good really is what you make it, how you see it.  I continue to view Little Man's chronic illness as our gift, he is our gift so anything that comes with him- I will accept.   

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out".
A blind boy sat on the steps of a building with a hat by his feet. He held up a sign which said: "I am blind, please help." There were only a few coins in the hat.

A man was walking by. He took a few coins from his pocket and dropped them into the hat. He then took the sign, turned it around, and wrote some words. He put the sign back so that everyone who walked by would see the new words.

Soon the hat began to fill up. A lot more people were giving money to the blind boy. That afternoon the man who had changed the sign came to see how things were. The boy recognized his footsteps and asked, "Were you the one who changed my sign this morning? What did you write?"
The man said, "I only wrote the truth. I said what you said but in a different way." I wrote: "Today is a beautiful day but I cannot see it."
 Be thankful for what you have.. Be creative. Be innovative. Think differently and positively. When life gives you a 100 reasons to cry, show life that you have 1000 reasons to smile. Face your past without regret. Handle your present with confidence. Prepare for the future without fear. Keep the faith and drop the fear. (author unknown)

1 comment:

  1. I got goosebumps Joy. The story is inspiring. You are inspiring. We'll all look forward to hearing a full interpretation of the results from Dr. J.