I won't sugar coat it... it's exhausting. I wanted to give some insight on what I (we) deal with on a daily basis and maybe many of you who may be reading this. It's better to have a village right?
First off, the planning. Lord, the planning. We can not eat at any new restaurant without calling ahead, speaking to the manager, possibly the chef, looking over the menu to find "safe" items, checking to see what may contain nuts that is fried in the same fryer of what our son would eat... There are no more eating places on a whim when it comes to places we go to with our son. Those days are reserved for my husband and I now.
We must plan all the time. Any venue (concerts, plays, amusement parks, birthday parties etc.) we attend, we have to think of places that possible nuts might be, bring safe snacks, wipe down any surfaces that seem questionable for traces of nut proteins. We just want our kid to have fun and never be left out. I'd never let him miss an event because of his allergy.
The planning of a 504/IHCP for our children when they attend school. Literally a plan to keep our kids safe, aka alive. It's ridiculous the amount of time and planning that goes into it. Some schools are even hesitant to allow parents to do this???!!! Our district was all for it, but not without at least 6 meetings prior and as of now (JULY) I am still waiting for the formalization for my child; who will be starting school in about a month and a half... What about explaining to your boss that your child's allergy is what is causing your absence because of these meetings? The annoyance you can tell over it... the certainty that he may think this is an intolerance and not a life threatening allergy.
How about planning a trip? First let's talk road trip: Possibly finding a hotel with a kitchen, score ! Making sure a refrigerator is in the room for safe snacks you are bringing or buying there, even better. Calling all restaurants you may eat before hand to plan out every single place you may eat, grab a snack or possibly dessert(dessert is always far fetched for us, 99% of the time, we bring our own.) Plane rides will be an even more difficult task (we have not done this yet....) Finding the airline that will allow you to pre-board to wipe down areas, possibly not serve nuts on the flight, make the announcement that someone on the flight has food allergies and the prayer that you will NOT have to epipen your child without medical assistance 30k miles up in the air. It's a pretty scary thought and not something that could not be a reality...If you don't have someone that has food allergies in your family, I liken this to possibly having a heart attack on flight... think about the response time up there??? Doesn't sound great right?
The constant watching your child when they eat something for the first time that is new to them. Even if you have researched it OVER and OVER to make sure it's safe. The waiting and hoping no reaction. If there is a cough, sniffle or my goodness vomit, you are concerned it's not just face value. The checking and re checking of EVERY item that you purchase for them to eat. Because companies change policies and ingredients at any moments notice. Many do not list possible allergens and they do not have to list if there is a possibility of cross contamination. The many calls you make to companies asking about their allergen statements, possible cross contamination, if their factories contain or if their equipment had a run of anything containing prior. Determining whether to trust the cleaning of the machines by their employee if they did? Could you imagine???
The excitement of finding new companies that make safe food for you child to eat that your kid may actually like but then the reality of the costs! Many allergy friendly foods are quite expensive. And some just taste awful, so to find one that your kiddo actually enjoys, score !
Some days I wonder why me, why us? Why were we selected to be the "allergy parents?" But I know for certain it's because I am a planner and my husband is a bit of the opposite. That part is just natural to me and with my husband pushing me to bend a bit, our son can lead an amazing life. This was the plan all along. We didn't chose it, but I would never change it. One day we hope my son can do the OIT therapy so there is less worry when it comes to his allergy. There is no cure, but with the therapy there could be less worry for cross contamination. Less worry for many things in the future.
Hang in there allergy parents. You got this ! We got this !
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