Want to know what I have learned recently? FPIES is a lonely disorder. It sucks. Everyone around me goes on with their normal life - eating whatever, doing whatever, eating whatever. They joke about Cutie Pie's chunky thighs and her pudgy cheeks. They comment about what a butterball she is. They mention that I look great having lost so much weight (SIXTY pounds since Cutie Pie was born!). They smile, they chit-chat about what they are making for dinner, they bring peanut butter sandwiches and cookies and pasta salad to picnics at the park. They go out to eat. But what they don't know is what we go through on a daily basis - and by we I really mean me. I am the one chained to my breast pump five times a day for 20 minutes each pump session. That makes over an hour and a half each and every day I am pumping. I am the one who can't eat popcorn at the baseball game, or get ice cream from the neighborhood ice cream truck, or enjoy a simple slice of pizza. Cutie Pie doesn't know what she is missing out on but I do. I am the one that sits on the computer for hours on end talking to other FPIES moms or doing research on how to help her eat or what foods are least likely to cause a reaction. I am the one who is spraying out mucus filled diapers. I am the one getting grey hair before my 30th birthday. Me, me, me.
I know it sounds so selfish and maybe I'm feeling sorry for myself these last few days. I know it's not me who is puking violently with every trigger food reaction, or up crying for hours on end in the middle of the night because I am in pain. I know Cutie Pie has it worse off than I do right now, but the truth is that she doesn't know any better. For all she knows, this is how every little almost 10 month old girl is. And in all likelihood (and by the grace of God) she will outgrow this crazy disorder before she is old enough to remember. But I will. I will always remember it. I will always know the sacrifices I have had to make for her - and how much I loved her to be willing to do it. But for just one day. Just one day I want someone else to do it. Someone else to deprive themselves of the good stuff. Pump. Worry. Stress. About a week ago my wonderful (yet blissfully naive) husband looked at me and said, "Wouldn't it suck if we both had to give up all those foods?!!?". No, actually that would be wonderful so I wouldn't feel so freakin' alone in this. I love my husband, don't get me wrong but he leaves all this "stuff" to me. He hasn't even as much as read one research article about FPIES. It's all on me. Up until Cutie Pie failed quinoa with a big pukey mess he didn't even really believe she for sure had FPIES. He's not much of a support system. He loves me, he works so hard for our family, but he is slightly lacking in the support department.
Thank God for the Internet. For the mommies I have met on facebook and Babycenter. For other FPIES blogs. Even for the people who read this blog. I just saw I've had almost 900 views! (And just FYI- not a single one of those views is from my husband. I've told him all about my blog and he's never even asked for the address). Never in a million years would I have thought that this blog would be anything more than therapeutic rambling from me. So, thank you for reading. I mean it.