having been diagnosed with FPIES and having to avoid a ton of major food components including wheat and dairy. However, a few days here and there every month, I struggle.
Sometimes it's triggered by little memories, like when we could easily spontaneously go out to dinner as a family. Sometimes, it's caused by much greater thoughts like "What if this lasts forever? How will she ever safely go to a child's birthday party and feel normal?" No matter what causes the struggle, I find myself wishing very loudly inside my head "I just want my kid to eat pizza and cheeseburgers!"
I remember with each of our older two, getting excited when they passed that one year mark and could eat meals anywhere and drink regular milk. The freedom of not having to worry about if we were going out over lunch because we could just order them something off the menu. This time around, that freedom doesn't exist. It's been stripped from us without even a warning. In order to go out, we have to pack a full meal and since most of it's homemade and perishable, it's not like we can spend the day running errands and then stop at lunch somewhere. When we visit anyone, it's like packing half the kitchen because I don't want to be an hour away and run out of food for her. Never came are the days of just grab a few diapers/wipes and go. Those little freedoms we so easily took for granted with our older too have yet to come.
And no, my feelings about her having FPIES aren't always as specific as "..pizza or cheeseburgers", but they are much the same. I often deal with the burden that something I did during labor and her birth likely caused this (there is a correlation between the broad-spectrum antibiotic I had during her labor/delivery and FPIES.) Something I did has cost us financially and emotionally as a family. I hate the feeling that I'm drowning in a sea of special formula, doctors, medical bills, insurance claims and can't get up for air. I'm tired of watching every crumb that hits the ground or reminding our older children not to leave snacks and milk cups around. On the really hard days, I get to the point of frustration and I think "Why can't she just be normal?!"
I know we are very lucky. On the spectrum of kids diagnosed with FPIES, she is on the more easily manageable end. We are lucky, because there is a very good chance by 3-4 years old she'll start outgrowing FPIES, maybe even sooner. We are extremely blessed to have an amazing support staff of family, friends, doctors and specialists alongside us on this journey. Other than FPIES, our sweet little girl is healthy, intelligent and full of life and most days that's how I feel.
This blog is about me being able to be real with all of you. The fact is some days are harder than others.
Thanks for listening!