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."

Sunday, February 6, 2011

"You're gonna miss this"...

..."You're gonna want this back, you're gonna wish these days hadn't gone by so fast...." This used to be one of my favorite songs, a song that could revive me to remind me to stop and smell the roses, to let them be little, to appreciate play and simple things.   That was pre-FPIES.   These days, the song just reminds me of everything we've lost with this diagnosis.   The innocence of the other boys living with a brother with a chronic illness.   Not only a chronic illness that takes up mom's time for caring for their little brother to keep him healthy but one that is so rare and so little is known about that mom's time is spent researching about how to get and keep him healthy.

....."these are some good times, so take a good look around, you may not know it now but you're gonna miss this...." Which part will I miss?   3 growing, hungry boys who can eat anything + 1 curious hungry toddler who can eat nothing = fun times?  Fun.   Fun to look into his eyes as he pulls on my leg while I cook- begging me for food.   I have millet muffins, I have foods that he doesn't want.    Millet cookies that are too dry textured that he will put in his mouth, only to gag on and choke.   Coconut milk that I am not sure yet if it is safe so have to limit how much he takes.     It is very normal for a toddler to want to be in the kitchen while you cook- the smell of the food, the fun of the dishes, time spent with mom....but he can't lick the spoon or even eat what I'm cooking- no matter how badly I want to share with him.  So, I let him explore- the cupboards.  Every drawer and cupboard in his reach has been gone through multiple times  a day by his little hands.  It's the least I can do.....but it isn't enough.   He wants the food we are eating.   He watches me as I dish up plates for his brothers; while he goes to the drawer and get a fork and reaches for a plate....maybe this time, maybe this time mom will dish a plate up for me too.  I do what I can, I give him a plate that look like everyone else.  I put his safe foods on it, he has little cups to drink from (hemp milk or water), he sits at the table with us.....but it almost always ends in frustration.  

We've been doing this dance for a year.   We're not new to the game.   We tried every trick in the book for distracting him, including him, anything, everything.  We get creative with his safe foods- he's had hemp popsicles, hemp ice cream, hemp cereal, hemp butter, millet cereal, millet cookies, millet muffins, millet pancakes, arrowroot pudding, peach dots, peach slices, whole peaches, peach puree.....

He simply wants to eat.    I can't safely feed him.   I assure you, I am not going to miss this.....


  1. i am so sorry. i am just beginning this journey as my little guy is only 8 months old. it is already hard having him get excited when he sees food and reaches for it, and not be able to give it to him. ill keep you in my prayers.

  2. Woke up this morning and thought of you, knew there was a reason why. I used to love this song, listened to it everyday, for the same reasons. Now thinking about it just brings tears to my eyes. My older 2 boys both use food as a control, "If I refuse to eat, maybe mom will pay more attention to me" or "If I scream at mom for food, maybe she'll pay attention to me" And then there's Carter, who can't or won't talk, and has resorted to hitting as his primamry communication. I know I will miss them being little, but THIS, I will not miss any of THIS!

  3. oh Joy. Boy have I been dealing with this lately too! I keep having parents tell me that some day it will be gone and go so fast and then what? Then we will all EAT! That is what! Oh but truth? Then we will all be sitting at the feet of Jesus feeding at his banqueting table together. That is when it will ALL be behind us. Jesus sustain us and give us hope, ....please remind us we have hope unlike others and let us be pruned now while in the fire. That refiners fire sure can feel hot some days! You are all in my prayers. *hugs*

  4. Thank you Chesney, Rebecca and Nichole....I hate that others are going through this same things too but I am comforted that I am not alone.