Since E was born, I have been immersed in FPIES, in one way or another. Early on, before he was even diagnosed, it was a literal immersion – I can show you the vomit stains on all of our clothes (and bibs, blankets, the carpet, etc). But after he was diagnosed and we started to get a handle on this crazy syndrome, the immersion became more intellectual. I sought out as much information as I could to help me to understand FPIES and provide my son the best, most normal life possible. I read journal articles. I joined Facebook support groups. I bought books. I started a blog.
I became immersed in FPIES. I thought about it constantly. I worried about it, I planned around it, I conquered it. I whined about it, I cried about it, I yelled about it, I celebrated our victories over it. And I was exhausted by it.
One Sunday this past June I was so tired that I was sure I was coming down with something. My wonderful husband gave me a day off and I slept. It was glorious – and a necessity. I needed to nip any impending illness right in the bud because I’m pretty sure caring for a toddler while you are sick is one of the circles of Hell. But I never got sick. At first I was confused and then it occurred to me that I was just very, very tired.
Really it was no wonder I was so tired when I looked at the week a little more closely. On top of the typical daily work of feeding, dressing, and chasing my very energetic son, something that all parents of toddlers do, I had several FPIES-related stressors and tasks. There was a craft play date scheduled for Friday. That meant that I had a week to confirm that the art supplies we were using were safe and/or procure alternative supplies, which also had to be confirmed to be safe. This required calling and emailing the play date organizer and two different art supply companies and praying that the safe supplies would arrive on time. We also had a family picnic over the weekend. This required a menu of safe foods for E and a substitute to the candy bag, a centerpiece of the event. To ensure that E would be happy and not left out, I had to find non-food treats that would be even better than candy. Luckily, E hasn’t really had much candy (and consequently has no idea what he’s missing) and I am an Amazon Prime member, two things that I am grateful for at least once week. So I found and ordered some “treats” but still decided to make a batch of safe cookies. Add in a customer service phone call to confirm that there were no allergens hidden in “natural flavors” of ketchup (there were, by the way) and a call to refill our supply of Neocate (E’s hypoallergenic formula). Oh, and we were in the middle of a food trial, which means I was on edge and watching every breath E took and constantly counting the minutes since he ate the food and trying to anticipate where we might be if he reacted and doing my best make sure we were at home. These current food trial preoccupations were compounded by weighing the pros and cons of trying various new foods and mapping out the timing of the next food trial. And when I took a “break” from all of this and tried to connect with the rest of the world, my Facebook newsfeed was full of posts from other FPIES parents struggling with their own stressors and issues and questions. I had some answers and opinions and experiences and I so desperately wanted to help to prevent someone else from wondering about something that we had already figured out. And then I was researching and writing a blog post and had ideas swirling around my head for several other posts that I wanted to write. And I wondered why I was tired…
At some point it occurred to me that I was not just immersed in FPIES, I was drowning in it. I needed to come up for air and quick or I was going to drive myself crazy and probably take the people I love with me.
So I took a break. Kind of. You can’t really just take a break from FPIES. Food is pretty important – your body needs it to grow and thrive and it’s also a social staple of our culture. There were still ingredients to double-check, there were still art projects to create, there were still picnics and parties to attend. Food trials, while incredibly stressful, are important to me. We are lucky enough that E has many safe foods at this point and we could probably afford to take a break from the trials, but there are so many things left to try, so I view them as a worthwhile stressor and I continued to conduct them. But I stopped engaging in some of the online support groups. I still tried to check-in from time to time but not daily. And I stopped blogging (though I’ll admit that I didn’t stop thinking about blogging).
I started really focusing on being a mom to a little boy, rather than a little boy with FPIES. E and I spent more time playing. I embraced the opportunity to see the summer through the eyes of an almost-two-year-old boy. We watched bees fly from flower to flower, sought out construction sites so that we could stare at the bulldozers, dump trucks, and diggers, climbed to the top of the tallest sliding boards in multiple playgrounds, went on wagon rides, jumped in puddles, ran up and down hills, picked dandelions, and played in tons of dirt! In fact, E demonstrated that it is possible to find dirt just about anywhere 🙂 We had a blast. I honestly don’t remember the last time I enjoyed a summer this much.
A side-effect of focusing less on FPIES, was that I also had the opportunity to focus on myself a little bit. I joined a Fit4Mom group and started exercising almost every day! I had forgotten how much I liked to exercise and how good it made me feel. And I made friends! For the first time since we moved back to Pennsylvania I felt like I had a support network. I met other women, moms, who were dealing with many of the same things as I am. Not FPIES things, just mom things and grown-up things. I started to feel like I have something in my life to look forward to and people who I could count on to motivate me to get and stay healthy. These women are amazing and are so incredibly supportive and take extra steps to keep E safe. I am so lucky! I began getting in shape and now have some hope that I will be able to keep up with my increasingly athletic son. I even lost weight! Oh, and I went on a couple of dates with my husband! I feel like I have finally reclaimed my body and my psyche.
It was an awesome summer.
I’m sorry that I have been absent from the blog for a while, I just needed to catch my breath. I needed to remember that FPIES is just a part of life. Granted, it’s a big part that affects most other parts, but it’s still just a part.
Now I am refreshed and (slightly) more rested and I have so much to tell you! I have tips and tricks to share with you about how we managed to enjoy ourselves and have fun at picnics and food-intense parties and on our first family vacation. I have several new recipes to share, including a birthday cake that I am really proud of. I’ve also continued to research and refine our food trial protocol, which I think I’m ready to put in writing. In addition, we have a bunch of big steps on the horizon and are hoping to challenge a couple of major allergens over the next couple of months. I hope that you’ll join us as we continue to learn about and overcome FPIES. And I hope that you’ll understand when I take an occasional couple of weeks off to breathe a bit and just explore the world with my amazing son.