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, November 21, 2010
FPIES builds character
FPIES is building a strong character in my Little Man. At his baseline (which he is at now), he is a quiet, content, happy little boy. A toddler who can sit quietly and color, build blocks, "cook" in his kitchen, put together a puzzle, play with cars and puppies. A little boy happy with his surroundings, and exploring and learning from them one step at a time- taking it all in....appreciating it all. As if he knows what he has missed out on from days of pain, days of only wanting to be held, days of tears (from both him and I). Ask for a kiss and you'll get it, ask for a hug and his arms surround you, ask for a high five and he can't stop handing them out!
We are holding our breath (and smelling the roses!) while he remains at a baseline. How long can we keep him here? Days like this that we feel more in control of our lives and his FPIES, that we feel we are winning...that we've been to he** and back and we can still see the light from Above. We know the dark side isn't far away, and those days of pain can be back in a blink of an eye, or more like the swallow of a crumb....so we stay cautious as we always have; but it is fun to just be.