When I tell people about JT’s allergies and about all of the precautions we have to take the most common response I hear is “that must be so hard”. People hear about how you grocery shop, what you cook for dinner and how you prepare for outings and they say “I don’t know how you do it!”. And really, there is nothing wrong with this response. It’s not insensitive or rude and I don’t mean to imply that it is. I’m sure in a different life I would have had a similar response. But, things like shopping and food prep aren’t hard. Does reading EVERY label in the grocery store make shopping take twice as long? Sure. Does finding (or creating) recipes that are safe for JT and still yummy and healthy enough to serve my family require more research? Of course. Is not being able to just spontaneously grab dinner out at a restaurant inconvenient? You bet. But those things aren’t the hard part.
The hard part has nothing to do with time or convenience. The hard part is that gut-wrenching hour after you notice a few unexplainable hives on your childs face and you are just watching and waiting for an allergic reaction. It’s rubbing your childs back as they retch and vomit for 6 hours straight because tests results have shown that they have outgrown an allergy, but not an intolerance. It’s seeing your brave child’s lip tremble as they hold back tears at a birthday party and the cake that they can’t eat has their favorite character on it. It’s emergency room visits, hospital stays, ambulance rides, testing and testing and more testing. Hard is dropping your child off at school KNOWING that at some point they will be in a room with something that could kill them and hoping, just HOPING, today isn’t the day you get a call from the nurse.
That’s what is hard. The other stuff is easy.
My husband and I get this question all the time….The first question is always “What is your son allergic to?”, once we answer that people are generally overwhelmed and wonder what in the world we feed him. To be honest, for the first 2 years he survived on mostly rice, ketchup and green beans. As we have adapted to this new life we’ve gotten much, much better at feeding our son, thank goodness! Our son, JT, is allergic to all dairy, eggs, soy, peanuts, tree nuts, beef, mangoes, melon, shell-fish and when he was younger white fish, peas and wheat. Fortunately he outgrew those last 3 when he turned 3. Being able to eat peas has not helped much, he is still a picky little boy, but being able to eat wheat has made a huge difference. Imagine…bread…pasta…flour!! When he was first diagnosed with all of those food allergies at 4 months old we asked the same question “What CAN he eat?”. It was overwhelming and it was scary. Each time I introduced a new food we worried and watched, waiting for the first signs of a reaction and crossing our fingers that it wouldn’t happen. And we were lucky. Nearly all of his allergens have been discovered through testing and any reactions he’s had have been fairly mild. We’ve never had to use his epi-pen and we hope we NEVER have to in the future! As it turns out, he can eat all sorts of things! I just had to learn to adapt the recipes that i already made to work for JT. I learned to make “meatloaf” without eggs, milk and beef and it still tastes good too! I also had to learn to read and decipher food labels. I was shocked at how many foods in the regular grocery store he could eat. We’ve never been foodies, we don’t eat all organic, and I can’t afford to constantly be shopping at specialty markets. Over the years it’s gotten better and much easier but you can’t let your guard down. Part of why we have been so fortunate is because we are constantly vigilant, constantly talking about it, if I start to get lazy a company will change their product ingredients and it will go unnoticed, or I’ll cut my sons sandwich with the same knife that I used to cut his sisters grilled cheese. If I have succeeded in raising a healthy kid with food allergies, you can do it too and I’m happy to help!