There are so many horrible, awful, disgusting, stressful and indescribable emotions and experiences that go along with this FPIES beast.
Man, this is a *positive* post... you must be thinking to yourselves! Haha. Its good though! Seriously! Hear me out!
The upside to FPIES seems to be the absolutely amazing mamas I have been able to meet in the process of all of this in the last almost year. By 'meet', I mean getting to know on various online forums. These are the women who have given me more cyber-hugs than I can count, cheered us on when we started passing foods (that I NEVER would have started with if it weren't for their hard-earned FPIES wisdom), and helped me just generally cope with all the craziness.
Having a child with FPIES can be really lonely. So many things just aren't safe. If you're trialing foods, leaving the house is a bad idea. Projectile vomit while hanging in the play area at the mall isn't all that socially acceptable. That play date just doesn't have the same appeal with the thought of sloshing milk sippys and ziplocs of goldfish crackers (shudder). Even birthday parties, having a babysitter, even choosing (or not) to continue working- because that means daycare- which is a terrifying thought! All these social events become way too stressful, so you just don't go. The thought of somebody bringing other children to your house that might 'contaminate' your much-labored-over 'safe' home is enough to drive a girl to drink! So you don't (bring anyone over. you DO drink! wine anyone?). You suck up the loneliness, the whispers from others that you're overreacting, and decide to just dig in and keep your child safe from reactions. Heck, its lonely even at the doctor's office. When the syndrome with which your child is diagnosed elicits the 'deer in the headlights' look from your pediatrician and all you hear are crickets chirping like you're living a bad cartoon... well.. that's sort of lonely too.
Don't misunderstand, I have people in 'real life' that are quite supportive of our FPIES journey. Its just that unless you've really lived it, so much is hard to explain. Especially those early months- its pretty intense and overwhelming. So I have come to rely on the other FPIES mamas in our life reaching from all corners of the globe, helping to ease the sting of the isolation.
TODAY, though (this is the good part I was promising!) I met up with another FPIES mama. For REAL! In real life! I sipped coffee, and chatted. It is a really powerful feeling to completely understand and to be truly understood. While you certainly don't want other mamas to have to deal with FPIES, it is a pretty amazing feeling to know you're not alone. We talked, and laughed and lamented. It really did my mama heart good; I think we'll do this again soon! It was a good day, filled with mutual understanding, and was not at all lonely.