I was in the minority growing up. I grew up knowing about food allergies. In the 80’s I was aware of them and even though they weren’t mine, I understood that they could be deadly. My brother was plagued with several. None of which were Epi-pen worthy, but they still needed to be addressed. His were pretty easy to navigate around: citrus, melons and tree nuts. My aunt’s allergy to oranges was Epi-pen worthy. Although we only saw her several times a year, we knew that oranges weren’t allowed. At restaurants we requested they weren’t on our plates and we never had them in our house when she came to visit. For our wedding I didn’t need to be reminded about her allergy, I knew to request that oranges be removed from the premises. This was an easy request because it meant my aunt could safely attend my wedding. But did I need to do it or did I want to do it? I guess you could say both. I wanted to do it because I wanted her to attend our wedding and I needed to do it in order for her to be there.
Skip ahead 5 years and we are plagued with another familial food allergy. Only this time it is my son. I watched his face go from 1 one hive to twice it’s size in less than 10 minutes and I pinned him down in the ER while they put an IV in him. I watched the staff buzz around him and even move his room to in front of the nurses station and the entire time I was in denial. I didn’t want to believe that we were facing a food allergy. Over the next 4 months I read, talked to other moms dealing with food allergies, and called manufacturers to discuss allergy policies and contamination concerns. Did I need to do this or did I want to? I guess both. I wanted to be proactive and I needed to keep my child safe.
At this point, we have lived through 2 allergic reactions and in both cases Charlie has ingested less than 1/8 tsp of peanut butter. In fact he probably ate the tiniest little smear of the stuff. His second reaction happened at one of my friend’s home that is very allergy aware. She calls to find out about food she could get to serve Charlie, she asks about allergy friendly eating in public places so her children don’t possibly harm other children and makes sure that she scrubs down her kids before playing with mine and Charlie had his second reaction in her house. It didn’t happen because someone was being malicious or uncaring, but because sometimes accidents happen when you venture into a peanut filled world. That being said, does she need or want to be this conscience about a diagnosis that does not directly impact her. I guess both. She wants to have her Godson in her life (technically both her Godsons have food allergies) so she understands the needs that go with that.
We’ve only gone peanut free for a little over a year now and in that time I’ve been told that I was being ridiculous, I’ve had people act like I was hurting their feelings because I brought food to their house for Charlie to eat, and people that have told me that I want to pack his food wherever we go. Maybe all of these things are true, but maybe it’s because I need to value Charlie’s health over their feelings. Imagine you go to eat at a restaurant and your server tells you that the food being served has a 10% chance of making you terribly ill and/or killing you. What do you do? Do you throw caution to the wind and eat it anyway? Or do you go home and eat food that is 100% safe? Now imagine you have to feed that food to your child, do you give it to him? Remember, one bite could kill him and you know this giving it to him. If I had to guess, you would probably return home and eat the safe food. You would probably also start packing a lot of your own food when you went to places and you may even sneak food into places that say they don’t allow outside food. Theoretically you don’t need to. So are you needing or wanting to bring your own food?
Here’s my answer: I need to bring food. I need to bring my own food because I love my son and I want to keep him around for awhile. I need to call ahead to your birthday party and ask about the menu and I need to read food labels. Believe me, I don’t want to do any of these things. My life would be 1,000 times easier and grocery shopping would be much faster if I didn’t have to do these things. I don’t want to call Betty Crocker from the baking aisle of the grocery store and talk about cookie mix ingredients and then ultimately decide to bake them from scratch. I don’t want to ask to speak to managers or chefs at restaurants and then trust them to not kill my son. I don’t want to worry when he goes to preschool and I don’t want to sit and discuss emergency action plans with his teachers. These are things I need to do. I need to do them because I don’t want to go to the ER today, I don’t want to jab my son in the thigh with his Epi-pen and I sure as hell don’t want him to die.
As a mom to a child with food allergies, I don’t expect you to really understand the difference between need vs. want. It’s really something you can’t empathize with unless you have been there and have made the choice, do I NEED to do this or do I WANT to do this? I do ask though that you don’t question my judgement of my needs vs. wants or take it personally if I don’t 100% trust you to meet my child’s allergic needs because his diet is not a choice that I wanted to make.