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."

Monday, November 5, 2012

Who's on 1st?

I know, I am STILL behind on my blog.  A day goes by, a week, a MONTH and I have very good intentions of getting things updated- to share our journey, our experiences, to help those also following this diagnosis with their little one know they are not alone.  Maybe something we've done is something someone else is experiencing, maybe it would help someone trust their instincts, guide where to turn (Babycenter support boards or The FPIES Foundation website are great places to start!).

I've just been so busy, which I know we all are!   Little man's FPIES and complexities take a lot of research and creative endeavors, thinking outside the box, comparing 'notes' with other families, looking for additional specialists to help as we encounter new challenges or revisit old ones....

The other day, I was reviewing the pronouns "who" and "whom" and their correct usage (in our home school curriculum) and the famous "Who's on 1st" skit from Abbott and Costello came to mind.  I was excited to share this with my oldest son, who quickly caught on to their humor and we ended up watching a few other skits (thank you YouTube once again); and this one came up...."Hold the Ghost".

And all I can think of is how closely it makes me think of how FPIES makes one feel.  I was JUST talking to a fellow FPIES mom about this the other day- how it feels like you're shouting and no one can hear you, or talking a foreign language that no one understands and everyone just looks at you like you're crazy, or maybe even worse- with the deer-in-the-headlights look.  You are completely alone, you are spurting, banging the table, barely breathing, yelling in your head and yet- the words are not coming out, the sound is not even there.  Help me, someone help me....I'm so scared, my baby is having scary symptoms and is in pain...and I don't know why or what to do about it.  So, you wish you could just get out of this haunted place but there is no way out -- if someone could just help you read the map; so you're assigned someone to help you read teh map but they are strangers to this place too and can't quite read by this light, and again you find yourself spurting for words, gasping for breath....and then finally a burst of sound comes out and everyone is looking and the phenomenon settles down....and you look crazy.   And then, while everyone is watching closely for the phenomenon to reappear as you said it would, something else pops up in another place and again, you're left voiceless and grasping not only for breath to breathe but the voice to be heard.   And finally, someone nods their glance your way- and the phenomenon settles down again; and you are assured that someone else understands but do they really?  "Everything is alright".   And you look at the map again, and try to find your way....comparing notes with the others in the room.   One day, you'll find the way...


  1. Yes! There is absolutely no better way to describe this!!!! Thank you for understanding!!!!

  2. We're here with you, I'm not a FPIES mom but I am a new mom and your story touches my heart.

  3. Hi Joy! My name is Fernanda and I have a 15 months old daughter who also has Fpies and still has no safe foods, but I am glad that she tolerates Neocate, although she also has issues with corn. I have been reading your entire blog for some time now, and I feel we have so much in common because of our little ones! Little man reminds me of my daughter in somany ways. Anyway, I am glad I've found you, your posts are amazing and I share the same fears, the same hope, we just want our little ones to be able to eat and not feel pain. I am really hoping you update the blog soon and tell us how little man is doing (really hope he is doing great)!
    Thanks for sharing!

  4. Thank you so much for the note Fernanda! I do hope to update the blog soon...have journal entries just needing editing! :) Just need that precious commodity -- time! Sam is doing well, for the most part. Thank you for taking the time to comment here, it means so much. Will get some updates SOON!:)