Living with life threatening food allergies has a way of defining our lives through our functional boundaries. We (who live within this worldwide epidemic) learn to navigate our way into complete avoidance of the allergic foods, as the best (and only) precautionary measure for safety. But, it can become a very monotonous, predictable, isolated, and an over-analyzed existence, as well. So many parts of our lives are not by choice at all, instead, our only life preserver. But, what happens when you leave your controlled and "figured out" safety net with familiar settings to break the molds we've set, and decide to explore the world with food allergies? My family decided to define our own boundaries when we decided that we had the tools we needed to take control of our situation and take on the unknown! We sold most of our belongings, drove east coast to west coast in an RV (to maintain our needed controlled environment), then moved to a small island chain off Southeast Asia!
We had a lovely home in a gorgeous town in Florida. Some could say we had a cookie cutter, suburban life. We'd made all precautionary measures for our daughter, who is anaphylactic to even the breath of cows milk. We followed, and made others follow, stringent rules all geared at keeping our little girl able to be safe in her own home. No shoes allowed inside, wash hands in the guest sink upon arrival. We provide the food. No outside sunscreen when using our pool- we would provide brands we knew were safe. Milk is hidden in everything and we learned that the long, difficult way. And so these rules were developed as each lurking milk protein was discovered, with the best intentions at heart. Our "bubble" of safety was not always well received and the isolation we felt grew palpable.
Living in our safety bubble, I began to worry that, while we were showing our daughter a sense of safety-trust-security, were we teaching her to isolate herself? Or, was that part out of our control and subject to the compassion of the people planted in her life? As year after year became 6 years, sadly-I began to think the latter. I know we did everything to give her a safe home and a sense of security. We started the non profit, Food Allergy Resources & Mentoring (FARM) http://www.fa-resources.org, to educate the community she lived in about food allergies. I know we did everything we could to make suburban life seem normal and seamless to her, but it was not a good fit. Still yet we'd become isolated, unconsidered for get togethers, and inevitably we began to wonder "why are we here"?
Looking back now, I know we really showed her how to manage her allergy. We brought enormous attention to food allergies in our community with accurate information, Epipen training, public speaking, free & inclusive community events, radio, print, & social media awareness of food allergies --the works!! And- we also showed her that we'd do anything in the world for her, because of the lengths we went to for her safety. I know because of our bond, and that she is so aware of what goes on around her. It was her who was ready for the journey of her life! She's innately a free- spirit like her parents.
The more people around us dictated their versions of what " we couldn't expect", the more I realized how little we had actually ever really "expected." It made me think if our meager expectations were too outrageous for the life we settled for, then what was holding us back from the life we really wanted? We were, afterall, becoming experts in food allergy safety, so we felt confident in our knowledge and abilities to push forward and create our own destinies. I began to long for the island life that we once had. The one we had set out into the unknown as newlyweds to live.
When an opportunity presented itself to move 10,000 miles away to the small island chain very dear to our hearts, we thought it was a great opportunity to see how strong our system of food allergy safety was. We would never do anything to risk our girl's health, but we came to a point in our food allergy journey where we felt like we really knew what we were doing. After all, we'd been leading the charge on food allergy awareness and safety with our non-profit and personal efforts for years and years. I trusted in our abilities to create a safe environment anywhere because we know how to take control of our environments, and form a "bubble" most places now. That's something we once thought was not-doable. This would be a great opportunity to teach us all that we are capable of traveling, something we had forbid as a safety precaution in our bubble. But, we needed to teach her to live!
Our cross country road trip was inexplicable! It was so educational, bonding, and an adventure non of us will ever forget. We worked in unison as a team, the girls were so excited to have our classroom moving across the country! We were able to visit with family we hadn't seen in such a long time throughout the journey. We learned about the 7 biomes as we drive through 6 of them, learned all of the state capitals, and numerous unplanned lessons that presented themselves organically in our experience.
Our diets, since our "food allergy awakening" consists of eating fruit, fish, rice, and vegetables as the main staples in our diet. There are other things of course, but not things we couldn't live without. Island living seemed so doable and a perfect fit even with our dietary limitations! Fresh fish from the fisherman daily, frozen organic produce, and fresh rice. Fried rice for breakfast! We really need very little to make our lifestyle and diets work, and our journey in the RV proved that concept. We made it completely across the country with no allergic incidents, except a few contact reactions from our visits in other peoples environments.
The plane was great! Asiana-Pacific airlines are incredible! They were so accommodating, helpful, and made accommodations to help serve our daughter. We were upgraded to first-class on seats in an efforts to isolate is from others and their contaminates. She wore an airborne mask and gloves to protect herself from the exposures beyond our control- so maintain. This is something I would never had considered when I was in the "bubble" mindset.
Our final push to choose to actually go and the day and create a new life for all of us was decided in an effort to open our girls minds to the world!. I wanted them to see the world, learn to adapt, learn to protect themselves, and stay humble and not attached to materialistic things.
Unplanned Obstacles
We have had our share of unplanned obstacles. Like, no almond milk in the store for weeks. Terrible storms that have wiped out fresh produce that were coming on ships. We've noticed an incredible need for food allergy education ! All of which we've managed to overcome and realize our knowledge has become needed here.
It's always great to buy some of your organic produce frozen. It's usually more affordable and it solves the problem of having it when you need it, in cases such as island supply and demand. Our morning smoothies and dinner stir fries have gone unscathed and uninterrupted from the typhoon, earthquakes, and other natural disasters we've experienced in the past 3 months.
Luckily, we've haven't experienced a very long power outage yet, but if we do, we have plans on how to manage that. There are campfires and man made ovens throughout the islands dating back to Spanish occupant times in the 1500's.
The journey has put us on another life track and I am so grateful for the risks we took. We trusted in our knowledge and broke our isolated "bubble" and learned how to bring our invisible "bubble" with us as we roam the Earth. We've been so preoccupied in adjusting to a completely new culture, that we are no longer totally encompassed in our limitations with food allergies. I now think that once you master your allergy, trust in your knowledge and go on with life! I'm grateful to turn our little ones into world travelers who are breaking every mold and every barrier places on them. I now don't worry about my girls feeling isolated or missing out on anything. I know they have been blessed with knowledge and travel, and all the added gifts that come with that. The world is full of people who once pitied is all. And as we move forward and meet people across the world, our minds are opened with new experiences as we are able to still live our own island dreams. Today I feel like somehow it will all work out.
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