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, November 17, 2010
The past two days have been busy, and my head is spinning from all the potential progress....and while Little Man maintains a beautiful baseline. He is a happy, playing, cuddling, kissing, giggling little boy the past few days and we are enjoying every minute of it.
Last night, a friend posted her Lessons FPIES has taught her. FPIES mom's come from all over the country, all over the globe! We connect on this level....every one of us has a picture in our head that goes with each of these lessons learned....I not only want to link to Carter's Maze but also share her text here. Thank you Carter for teaching your mommy, who teaches me, who supports me, who has shared so many of the ups and downs over the last 6mo. with me. FPIES has taught me these lessons as well.
Carters Maze: Lessons
"Things FPIES Has Taught Me . . .
· Two year olds have more compassion than the average 30 year old.
· Walking around wearing a shirt with vomit stains really isn’t that embarrassing
· It is possible to go a whole day with poop on your shirt and not know it and not care
· Doctors are human too, which means they are fallible
· Doctors don’t keep up with the latest research in their field of expertise
· Crumbs are scary
· “A taste of this won’t hurt” is completely untrue
· The internet is amazing. You really can find anything!
· Mommy instinct should always be acknowledged
· Poop really is a four letter word
· The American culture is completely intertwined with food
· Support is essential to sanity
· Passing a food feels like a kid on Christmas morning
· Failing a food is heartbreaking
· Just reading food labels will not keep our kids safe
· Seeing your child’s face covered in food can bring tears of joy to your eyes
· A birthday cake doesn’t have to be made out of flour or even food
· Every sunrise is a chance to start over, full of possibility
· Strength is tangible
· Sleep is optional
· It’s amazing how creative you can be with foods
· No matter how many children you have, you are never prepared for this!"
And here are my additions:
-Corn and soy are in everything
-Projectile poop is something new, even to a 4th time mom...
-Acidic vomit stains carpets...
-FPIES is an ironic, ironic world
-Love and support of family and friends is truly amazing
-I used to think I knew what busy was...
-I used to think I knew what tired was...
-I never knew how strong a sick baby could make me
-Everything amazes me and nothing surprises me anymore.
-Instincts are amazing
-Faith sustains me
-Everything, every.little.thing, happens for a reason.