When holidays roll around, everyone makes plans to gather for large meals, exchange gifts, and participate in traditions. The excuse to gather with family is great!! But, when you or someone in your family struggles with allergies, the stress of gathering builds and it can be hard to enjoy the quality time with loved ones. Holidays with allergies are less of a celebration and more of a marathon.
We are so blessed to live in the same town as both my parents and my mother in law. One of my brother in laws and my husband’s extended family live in town too. I also have my Dad’s side of the family pretty close. It’s fantastic to be able to see so many people relatively frequently! But, it makes holidays a challenge. It means driving to at least three gatherings in one day. That’s usually three meals we have to work around, both in scheduling and in safe eating options. Being on a restricted diet can be isolating and even more so when you’re used to partaking in food based celebrations and suddenly have to skip sharing in these meals and traditions.
Jett’s First Year
We were just learning of Jett’s FPIES and didn’t quite understand the implications of his dietary restrictions. I had looked forward to starting family traditions with our son since we found out we were expecting him. As adults, my husband and I both remember traditions our families started when we were young. Most are surrounded by food. We had a lot to learn about what holidays would look like for us.
Christmas was the first holiday where we had any restrictions. I quickly realized how I’d always taken advantage of being able to eat whatever I please without any ramifications. Growing up, my Mom and I spent a week making various types of Christmas cookies. We decorated sugar cookies, made magic cookie bars, peanut butter kiss cookies, and more. Missing out on this tradition was hard. Even when I was in another state during college, I was still home during the holidays and enjoyed making cookies with my Mom and a friend. This was the first year I couldn’t participate. Some of my favorite foods were off limits too.
I was on a dairy free diet and the anxiety I had about eating something that caused a reaction was severe. I asked so many questions about every dish, and even though family members intended to make safe options, we still ended up with Jett chronically reacting.
It was a little easier with Jett, he wasn’t eating solids and hadn’t really enjoyed the few we had tried so he didn’t mind that he couldn’t have any of the large meals. I did have to constantly watch him to make sure he didn’t accidentally ingest anything. Many allergy parents face the risk of their crawling or walking little one grabbing ONE CRUMB of a trigger food off the ground or a well meaning relative offering their kiddo a bite of food. These actions could result in a hospital stay for some children. Parents turn into helicopter parents and family members get their feelings hurt when meals are turned down or they’re scolded for offering a child a tasty treat.
It isn’t just meals that pose a challenge. We do a white elephant gift exchange with my husband’s family and I ended up with a chocolate gift that I couldn’t enjoy. Thankfully, I know many chocolate lovers who could take them off of my hands! It was hard for me to not be able to enjoy them, I can’t imagine a young child being gifted a food they couldn’t have.
By Easter, my diet was a lot more restricted. I wasn’t able to eat anything anyone else prepared. The number of foods I was consuming could be counted on two hands. I will tell you, holidays before the diet restriction were tiring, but when I had to make and eat all of my meals before rushing off to three locations for large meals was pure exhausting.
Jett was in his stage where he wouldn’t nurse anywhere but in the dark in our bed so we’d rush home to nurse him. Then I’d have to pump, make food, get everyone dressed and ready again and back in the car. I scarfed my plain ground beef patty and boiled brussels sprouts on the way to sit at the table with extended family for meals that smelled incredible.
It wasn’t just the multiple family meals. Easter baskets are filled with candy and goodies that Jett couldn’t have. He wasn’t even a year old so tiny toys that fit into eggs were choking hazards. Jett did receive a book about Easter that we shared with him.
After all, holidays aren’t about food. Both Christmas and Easter are celebrations of the birth and resurrection of Jesus. While we try and focus on the true meaning of holidays, we are also separated from our church family. Even church nurseries are filled with food. Snack time and arts and crafts are full of potentials for ingesting trigger foods for kids with allergies. And Jett had an additional struggle, his eating disorder kept us on a tight schedule. Nursing, pumping, making and eating food. Then repeat. The cycle was constant. And if Jett gets sick, he refuses nursing completely (even in his sleep) so the risk of bringing him to nursery was not worth attending a service.
Jett’s First Birthday
Everyone has seen pictures of smash cakes on social media. It’s the cutest fad ever! Well, Jett had one safe food, chicken. There was no way of making any sort of a cake that he could enjoy. This was the hardest part of my baby turning one. It may seem silly, but it’s a common feeling mothers share across FPIES and allergy boards. We all want some semblance of normal for our children and monumental events like first birthdays don’t happen again.
My diet consisted of enough foods that I was able to choose dishes to serve that allowed me to eat some of what others enjoyed. While I couldn’t have a juicy cheeseburger on a nice, toasted bun dripping with ketchup and served with chips and a soda.. I ate a beef patty with salt and a side of strawberries and grapes. We did have a beautiful cake made that Jett took pictures with (from a short distance) and everyone else was able to enjoy it.
Jett ate some chicken and a breastmilk popsicle I’d made for him. He didn’t mind and won’t remember the event. All of our family and friends will remember being able to gather and share in the celebration which is what really matters.
Jett’s progress in both his eating disorder and FPIES didn’t really improve much until he was almost two. His second year was much like his first for both he and I. Our Halloween, Thanksgiving, Christmas, were much the same. By March, Jett was 22 months old, he finally made some progress and we were able to start adding some foods to his diet. I was able to help my parents make a meal that was safe for me to enjoy and it was the first meal I shared with anyone besides David.
Jett’s 2nd Birthday
Between March and May, Jett went from 7 safe foods to 18 safe foods. He was accepting pureed food with a video distraction. His expanded diet allowed me to add new foods to mine as well. We took our first trip in over a year!
On Jett’s 2nd birthday, we flew to Kansas City for a dear friend’s wedding. David has a client he was able to visit too. I spent weeks researching how to travel with Jett’s safe foods. We packed a cooler full of prepared and frozen solid meats, veggies, and purees. I also had to bring things for me to prepare my food while on our trip. We knew we’d eat some meals out and had carefully selected a few farm to table restaurants we could dine in. I found an awesome condo to rent (we needed a full kitchen to make our breakfasts and lunches) that was right next to the rehearsal venue (we dined there twice!).
Well, our first flight was delayed and we missed our second flight causing us to have a four hour layover. None of the restaurants in the airport had any safe food (besides some fresh grapes at a news stand) and all of our food was frozen solid (to get through security, any liquid must be frozen) and no one was allowed to heat anything for us. This hiccup made for the longest day we’ve had.
The rest of the trip went really well. Our windows of free time were short, just as they were at home. Once a day or so we’d stretch one window (eating some fruit on the go and pumping in the car) to allow for something fun.. the aquarium, the zoo, the wedding!! We were able to enjoy a few chef prepared meals (mostly steak which Jett loves too!) and did well without any significant reactions. Jett did loose almost a pound mainly due to a change in schedule and poorer nursing/dream feeding while in a different bed. It took awhile to catch back up but nothing horrible happened and we all needed the vacation together.
Since we took our KC trip (traveling with allergies is so expensive!) and had just moved into our new home, we skipped a formal birthday celebration. I’m thankful I didn’t have to miss the cake!
We also took Jett to his first show, Elmo Live! It was another thing that other parents could enjoy that we hadn’t been able to because of his feeding schedule. Jett loved it and napped really well after!!
Whether you are an allergy family or you have friends or family who have allergies, I hope you’ll be understanding and mindful of the care that it takes to keep our kids safe. It extends past holidays and goes into birthday parties and play dates. Simple things like keeping food off of playgrounds. Washing your child’s hands after eating. Cleaning up crumbs in waiting rooms. Small tasks that make a huge difference.
Part 2- Light at the End of the Tunnel coming soon!!