Empowered & Lucky....But Not Today

Multiple times, I have heard the following in reference to Landon's allergy

"I would be so afraid"

"I don't know how you deal with it"

"It is so scary"

and "How will you ever send him to school?"

And I have to be honest and say on most days, I don't feel scared or worried. I feel empowered and lucky. Yes, lucky. Lucky because God gave me this child who has opened my eyes to things I wouldn't have taken notice of before. I am grateful because if it weren't for Landon we would not be empathetic towards children with food allergies. I would not have knowledge of the importance of food labeling, food exclusion, or anaphylactic symptoms. On most days, I feel it is my responsibility to advocate, make others aware, and educate myself on food allergies not only on behalf of my child but on behalf of all the children who live with severe food allergies. I am also always well aware and grateful for the fact that although his food allergy is severe, he only lives with one and many children like him have multiple food allergies.

But today was not most days. Today, I didn't want to feel empowered. I didn't feel like explaining to another person about how Landon wouldn't be able to participate in certain school activities unless they were made safer.  I was sad that my 5 year old had to tell me he ate a candy that he wasn't supposed to eat even though his brother wasn't around. Frustrated that I had to check all of his candy to make sure it was okay to even bring home.  I watched all the Kindergartners hunting for their eggs knowing that when it's Landon's turn to participate in this activity, I will have to be there. I will have to check every piece of candy before he eats any of them and I will most likely have to take some away. The cupcakes that the children decorated today were so adorable and a fabulous activity but when Landon is in school unless I have made the cupcakes, he will not be able to eat them. And the M & M's that went on top, he will have to avoid. Was discouraged at the "Nut Free" tables in the cafeteria that were not labeled and were completely empty. Will he eat alone every day? Or do I have to worry he'll sit next to someone with a PB sandwich, which if touches his food and he eats it, he could die?

It is exhausting. Reminding, teaching, and being cautious. Sometimes it is exhausting to keep him safe. Many people don't understand why does it matter what his brother eats at school if he's not allergic. Because I have to be careful that he doesn't bring anything home that Landon could get into or eat. I have to constantly be thinking when situations happen how to ensure he doesn't come into contact with peanuts. We go to birthday parties and bring his own treats. We avoid restaurants that cook with peanut oil or serve dishes with peanuts. I pick up peanut butter candy wrappers and crackers I see on the floors or in grocery carts that people have left so that he doesn't put them in his mouth. Unexpected things happen all the time. Whenever I drop Landon off at Sunday School, MOPS, or Bible Study I have to ask what they are having for snack. I have to be sure that they are not offering anything other than the goldfish. I have to tell them every week, he is allergic to peanuts. And sometimes they will say, oh we are "just" having cupcakes. And then instead of explaining to them about traces or the dangers of eating from a bakery, I just simply tell them he is not allowed to have any. And then I feel bad because he will be without a treat.

This month there have been 3 incidents in the allergy community. Two deaths, and one in a coma.....all from peanut allergies. I had a dream the other night that someone gave Landon a white Reeses Peanut Butter Cup and he wasn't breathing and I was running with him to try and get him his epipen and he was laying lifeless in my arms. But the worst part of this nightmare is it could be true. Someday it could be true. And I know if he ever has severe reaction, I will feel completely at fault. And so I have to keep up my defenses and do everything I know how to do. Bore people with my allergy info, continually tell them why we can't eat certain places, or participate in specific activities. And it is at times exhausting.

He has also become a lot more aware this past month. He identifies Reeses and M& M's as things he can't eat. He is constantly talking about nuts or if something has nuts and "I can't eat that because it will make me sick".  This is bittersweet to me because it's refreshing in knowing he is beginning to truly understand and verbalize his allergy. But sad because he is beginning to realize he is different than his brothers, than us, than other people who can eat wherever and whatever they want.

And so today I don't feel like fighting. I don't feel like advocating. And I don't feel like explaining why just because something doesn't actually have peanuts, he can still have a reaction. Landon has been known to throw up, on more than one occasion, just from eating foods with traces of peanuts (meaning it could have been made on the same equipment or in the same facility).

Today I kept him safe but I was too tired to fight his battle. And on this day, I felt weak as I foresee how many more situations we will encounter, how many times I will be frustrated, and how many more times I will have to smile and be patient with others who look at me like I'm crazy. I know as he gets older, he will be able to be more responsible for his allergy. But sometimes that makes me tired too. Because that is my responsibility as well. Teaching him how to keep himself safe. Hoping he will be responsible enough to make those decisions. And so I write this so I don't forget at this moment what it feels like to be his mother. Just like I said when I wrote  The Nutty World I Live In/The Way I See It, I know there will be different stages.

 

For now, I allow myself to feel tired and discouraged. And tomorrow I will get up and continue to fight battles for him. Teaching others how to keep him safe, instructing them on what to do if he has a reaction, teaching my children to be empathetic to others who are different, and smiling and being patient with people who don't understand. And no matter how discouraged or weary I get, I praise God for Landon and the way he made him. I praise him for the fact that we have the opportunity to educate others and if we're lucky things could change for the better for him and for other children.

Landon wearing his "Peanut Free" sticker to church.