There are plenty of times when my husband and I stand face-to-face, toe-to-toe, at a complete standstill. Except that we aren’t completely still. I am shaking my head back and forth and he is nodding his up and down, at equal velocities and with equal vehemence. That’s why, by all accounts, we are stuck.
I was the only one of us to witness the first two episodes of anaphylaxis that our son experienced. This played a significant role with my husband’s initial willingness (head nodding yes) to participate in certain events that I found intensely uncomfortable and potentially dangerous (heading shaking no). This is often how the story starts – unequal fear, unequal worry, equal isolation, equal frustration. When Gino had anaphylaxis on a weekend when my husband was home, our standstills (more like standoffs) quickly became less frequent. I think we can all agree that it’s hard to believe how fast and scary a reaction can be but once you see it, you never, ever forget it.
We still have times when we are just simply not sure what to do. Is this situation safe for the kids? Have we done everything we can to make it a safe environment? Do the benefits outweigh the risks? If something happened, could we ever forgive ourselves? How in the world do we decide what to do? And then we frequently find ourselves submerged in this gray area wishing there was someone who could just tell us what we should do.
Well, no one can tell you what you should do but I will share with you how we find our way through the often-murky waters. What has taken us five confusing years to master (I use that term loosely), I’d like to share with you in five minutes. Our way is balancing act of “Educate. Integrate. Keep safe.” It keeps us on the same page, side by side.
Educate: First, we ask ourselves if we feel that our children can be educated so that they really understand what having food allergy means to them. At the beginning of our journey, the children were definitely too little to understand what food allergies were and too young to be responsible for not putting everything in their line of vision directly into their mouths. The risks were too high. They were ineducable; therefore, they couldn’t be integrated because we couldn’t do enough to keep them safe. We missed a lot of celebrations during this stage. The early years were extremely isolating and definitely very hard on us.
As the boys got older, we started realizing that their understanding was shifting. When I would ask them if they knew whether or not they could eat cookies at Uncle Danny’s party, they would swiftly reply, “No! We are allergic to them!” This is when things started to change a little for us. We felt there was at least a possibility of introducing the kids into certain social situations depending, of course, on the rest of our discussion.
If we are comfortable that the children understand the food rules, our next question becomes whether the people in our family, our circle of friends, at the restaurant, in the school, etc are educated or open to being educated about food allergy. For example, when my mom makes an allergen-free meal at her home and she cooks using all of the proper precautions we have discussed, we know she understands and we trust that she has created a safe space for us. When another family member states that she can’t throw a party without peanuts, we know there exists a lack of understanding. In one situation, we feel as though it will be safe enough to bring the children and in the other, obviously, we don’t.
Integrate/Keep safe: When we feel that everyone involved is properly educated, we move on to the next two topics: integration and safety. These are inextricable and fluid. Is it safe enough to integrate the kids into this party or school? If we are at a restaurant, can we set up a place at the end of the table and bring our own food? Is there a way to create a buffer between their safe food and the allergy-containing foods? When we feel we are able to create a safe enough environment, we are willing to integrate the kids. But we watch. We stay vigilant. We hawk over them. We know every move they make without them knowing we do. And because you can never, ever guarantee complete safety, we never, ever forget their epinephrine.
But now that we have integrated, does it continue to be safe enough? We have been in plenty of situations when no matter how vigilant we are, what we thought was going to be safe is no longer. You cannot feel so committed to your initial decision that you stay in an unsafe environment. At the point when we feel that it is no longer safe enough for us to integrate, we have to leave… and often this is when things literally disintegrate. I become very anxious. The kids are either nervous or mad at me for leaving. This moment of disintegration usually happens when the cake and ice cream roll out at birthday parties or when we notice that every table is filled with an over-flowing bowl of mixed nuts.
“Educate. Integrate. Keep Safe.”
I hope that in some way this approach is helpful to you, especially if you haven’t developed your own strategy yet. It took us years to figure out a system to guide us when we had no idea what to do, were paralyzed with fear and began to express our frustration as anger toward each other. It’s a starting place, at least, for conversations with your spouse, your parents, your friends, and your children. In a world full of grays, it is as black and white as we could get.