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.