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, September 13, 2011

Cost of Livin'

I keep hearing this song play on the radio, on my way to and from dropping off the boys from school, taking Little man to appointments, to and from the hospital when he is admitted: Cost of Livin' by Ronnie Dunn and it makes me think of my husband and the weight of the cost of FPIES on our family (and I imagine shared by so many others).   The cost is high but the value is immeasurable.   The cost of living with this chronic illness is high: formula, special foods, compounded/specific medications, multiple tests to rule out other diagnosis', specialist visits, hospital stays, keeping a family of 6 afloat through all of this.....nothing in comparison to the outcomes of health for our Little Man.  

Little man's daddy holds this end of our rope, his dedication to his work provides our family with our cost of living....and by God's graces, we have all we need.   Who else tells anonymous donor what we need so it will appear in our mailbox on the very day we need it most?   Who else assures donors at our Benefit how much we needed contributions to our Little mans current cares and needs, as much as, we needed contributions to FPIES research?  Who else would whisper to family and friends, and friends that are like family, to supply us with groceries?  Who else gives strength to a sister to move to live with us while our families needs were so very high that only a sister could step in for?   Where else would the messages me received to "fill the boot" for our trip to CHOP, again.   Where does the generosity come from to loan us an RV to drive our family to CHOP, again.  More than just understanding for sick leave from co-workers but donations of time for more.  This is only a partial list of God's graces that surround us like a blanket of warmth and protection, assuring us that He will always provide our needs- in any form He can.


  1. ahhhh...preach it sister. God's graces. Dont know how ANYONE gets by without them.

  2. You are an inspiration by your gratitude and love through this hard time. We have a little one that has failed every food we have given him. It is beyond frustrating, but we find joy in so many little things. Thank you for your strength. FPIES Momma to Jake.