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."
Thursday, April 7, 2011
Where are the words?
And then I see them.....written by a fellow FPIES mom....words like "most of all tired of this fight that prevents me from being all that I can for my family" and "...we try to be a united front but my goodness, a child's chronic illness will definitely take it's toll on every aspect of your family life"...."when both parents are filling everyone else's bucket, there is little left over"....These are the words from a fellow mom I've spoke of before....her family has already given us so much, giving their son's appointment slot at the PCRCD and taking the later date one. And now, without even knowing she just gave to me again. She put words to my recent heavy heart, well-written, descriptive language to the hardships of raising a family through a rare, little understood, chronic illness. Words that I read over and over, choking back the tears.....we are not alone....
Her words are here: Somethings Gotta Give.