The Hard Part

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.


School update

JT has been in school for two months now so I just wanted to update you on how it’s going. I was really nervous about sending him to school at the beginning of the year (you can read about some of my concerns here) but it’s actually been amazing! He loves it, I love it, everyone is happy. His teacher is super attentive, his school nurse is very involved, he has friends that sit at his lunch table with him and (as far as I know) there haven’t been any allergy related instances that have made him feel left out. His classroom celebrations are not food based so there aren’t any situations where everyone but him is eating a special cupcake. He has seen the nurse a few times due to a belly ache but none of these seem to have been food related and the nurse is great about keeping me informed. I actually think a few of those “belly aches” may have been an excuse to go chat with the nurse, he likes her a lot and he’s very talkative! He’s never come home itchy or rashy, which is incredible! We went to a birthday party just this past weekend that involved kids eating pizza and then playing on an inflatable play structure and by the time we got home he was all red and splotchy from touching the surfaces that kids had been touching with cheesy hands. I’m confident that the kids are washing hands after eating like they are supposed to (according to JT’s health plan) and that the cafeteria is cleaned after lunch and before it becomes the gym. The entire staff seems to really be paying attention.

Aside from having our allergy related concerns relieved (really it’s never totally relieved, I still keep my phone right by my side all day, just in case, and still sometimes have a knot in my stomach at lunch time) all of the normal concerns have passed too. JT is making friends, having fun and learning! Watching him learn to read is so fascinating! We have our first teacher conference coming up next week and I’m excited to talk with her.  In our town the kids go to 5 schools before reaching senior year so it seems just as the kids (and parents) get used to one school it’s off to another, I can only hope each transition is as smooth as this one. Oh…and he is still being driven to school every day but after hearing that the bus ride is 45 minutes long (we live about a 5 minute WALK from the school) I’ve decided to be OK with that (for now)!