"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 peaches...safe 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.....