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."
Wednesday, August 29, 2012
Sharing our story....
From June of 2010 to today, August 29, 2012; I have logged 385 posts (and yet I'm still months behind) and have had over 35,000 page views (wish I would've figured out how to put that little page ticker on my footer at the beginning); it's been humbling to see how many have followed and shared in our story. Sharing our story has become an important part of this ride, as others have done before and beside me- it helps.
"When you stand and share your story in an empowering way, your story will heal you and your story will heal somebody else" Iyanla Vanzant.
With the busy-ness of 4 boys and summer, the complexities of FPIES, and my work with The FPIES Foundation, I have been a little more absent from updates, but do promise they are coming. I've been keeping a journal as we go through this muddy mess we've been in with little man's FPIES as he approaches and passes 3yrs.old and still stuck, still adding new triggers and not outgrowing old ones...the updates are coming! Overall, he is doing well, growing and gaining weight and meeting developmental milestones, and continuing to teach us about patience and appreciation for God's simple gifts in life.
In the meantime, I would be honored if you would check out the new website for The FPIES Foundation. It is a 'labor of love', a resource packed with tools for new families and struggling families, a place to share stories and find support - a network of caring. A place to come home. We are not alone.