Educate. Integrate. Keep Safe.


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.



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18 Responses to Educate. Integrate. Keep Safe.

  1. Diana says:

    That was a very good article. It is so hard to keep our kids safe while at the same time trying to make them fee like they are not missing out on something. The most important point you make is never, ever forget the epi-pen!

  2. Susan says:

    Simply ditto to your every word and feeling! Our motto is similar…educate, equip, and enjoy!!

  3. Marisa Nachman says:

    Well written

  4. Jannie says:

    This is so eloquently written – a wonderful insight for those without children with food allergies and what a great resource for those with food allergies. Thank you so much for sharing your experiences!

    • Sarah says:

      Jannie, That is exactly what I am trying to do – reach out to everyone, with or without food allergies. It is becoming such a wide spread problem that it seems everyone is somehow affected. Thank you so much for your kind words and all of your support. Sarah

  5. Mike says:

    Interesting article.

    My wife has lots of food allergies, and I have none. I remember when we first started dating thinking that this was going to be a potentially difficult situation. She’s allergic to nuts and seeds, so Asian restaurants are almost always out and eating desserts out is usually not possible either.

    But, like most people, we figured it out. When I’m traveling on my own or eating by myself, I’ll get my Thai fix. Her allergies motivated her to bake her own desserts.

    Now we have a 2 year old with dairy and egg allergies. She’s beginning to notice that we’re not giving her the pizza her mom and I love (and thankfully isn’t dangerous to us). So, we’ve solved our own problems, but now we’ll have to figure out how to help our daughter :)

    • Sarah says:

      Mike, Good to hear from you again! Pretty soon I will start to post some top-8 allergen free recipes as well. Maybe that will give you some more ideas to help your daughter! Having different food allergies under one roof, as we both do, can be so challenging! As with anything, it is a work in progress. Keep in touch!

  6. Aubree Affeldt says:

    Hi Sarah,
    Wow! I truely appreciate your sharing your real life stories and informative solutions. I am a food allergy mom of 1 -3yr old beautiful girl. I truely love my daughter more than life itself. I couldn’t believe when we found out that the reason she was constantly sick and losing excessive weight and always broke out from head to toe with blisters and eczema was due to sever food allergies. She has also had to anaphylaxis episodes that about killed me to watch. Our household is still a bit divided or standing toe to toe as you put it on certain items. My husband feels that we should be more laxed so as not to come off as those “crazy parents” but I on the other hand don’t mind the crazy title. I take my daughters life very seriously and feel others should as well. She is a gift given to me from God and I will always cherish her as such. I truely appreciate you and your family for advocating for the Epipens in schools. As my daughter is in daycare/preschool, I have had to fight to have meetings with the staff about possible contaminations and also just being able to use an Epipen on her. This school year is better, but I am so glad that there are those out there that are getting the message that this is life saving and a neccessity. My daughter is learning real fast to say no to adults when they offer her food, candy, snacks, drinks etc. She knows now to ALWAYS ask mama before she even touches it. She has had bad experiences of people touching her hands who have just ate something she is severely allergic to and had her hands, arms and chest break out and bleed from blisters. I cry alone a lot over the things she has to endure. I love that you gave to us your great list of three “Educate. Integrate. Keep Safe.” I am going to share this with my family this evening. I feel that those who have not had to encounter what its like to live this life, truely don’t understand the pain, pressure, anxiety, loss of sleep, constant watching, reading, researching, etc that it takes to keep going every day. We too have days and nights that we dont know what else we can give her to keep her wanting to eat the few things she is able to. I am just so glad there is another mother who knows what it takes. I don’t have a forum or a support group in my area. I know there are others who are going thru the same things but they haven’t reached out. I am so thankful for you and Cybele Pascal and all the allergy mom bloggers for all that you do for our unique community. Keep sharing and help us learn together. I too await the day when they can say there is a cure for these ugly food allergies.

    Love your family every waking moment!

    • Sarah says:

      Aubree, Please consider me your support group. That’s what I am here for! I hope that sharing this post with your family was well-received. I’d love to know how it went. Stay strong, friend. Thank you for reading! Sarah

  7. Jennifer says:

    It’s hard for mom and dad to get on the same page sometimes. Nursing was a tough challenge for us. I just wrote about our experience here: Love your blog!

    • Sarah says:

      Jennifer, I just kept thinking, “Please tell me he didn’t eat that pizza!” I was happy to see he quickly jumped on your page! Thank you for reading and thank you for sharing too!

  8. Alice says:

    I’ve been reading through your website and just want to say thank you for taking the time to share all of these stories and thoughts with us. It is because of people like you, blogs like this and support pages on FB that I am able to cope with my 3 year old daughter’s peanut allergy. My husband and I didn’t see eye to eye at first a year ago when she was diagnosed. I think it was part denial for him combined with the fact that I have always had a tendency to stress out and overreact to things. I turned to support pages to help me feel like I wasn’t alone. Thankfully, he came around and we are now on the same page. I still find these sites to be incredibly helpful and informative. We are at the stage right now where it is just so much easier to not go to birthday parties and food based celebrations. We tend to have as much at our house as possible to make sure it is safe. Unfortunately, there are only a select few in my family that really seem to understand and try to help. I do need to work on trying to educate our family members more. I have a problem with writing people off because I know it would take seeing a reaction for some of them to get it.

    • Sarah says:

      Aubree, I am so happy that you have taken time to read my posts. I was thinking that it may be a nice idea to use my post, FAI speech, as a tool to help teach your family more about food allergy and the reality of how serious it can be and how that just might be a little related to your level of stress…. Take care. Let me know how it goes. Sarah

  9. Heidi says:

    I have life-threatening peanut and cashew allergies, and I totally agree with this article. You need to know what is safe and what isn’t before you put yourself in an environment where there is a risk. It’s especially hard at lunch in the school cafeteria – like asking a friend’s boyfriend to switch places with someone, or something, because he’s eating a PB&J sandwich. Or when someone brings homemade trail mix with peanuts, cashews, peanut M&Ms, and they pass it out, I make sure that if someone sitting next to me has some, either I move or they move. It’s very frustrating, because most people don’t seem to get how serious my allergy is – that I could die sitting next to them. Of course I have epi-pens in my lunch bag and backpack, but… I would feel a lot better if all my friends read your blog posts. They are very helpful. :) Keep on writing!

    • Sarah says:

      It is so wonderful to hear from an individual who has food allergies and to hear that you find the posts helpful as well. That is tremendously important to me. If there is anything you would like to hear from this blog, let me know. Have you shared this blog with your friends yet? Via facebook or anything? If so, what was the response?
      Thank you, Heidi. I am so proud of the way you keep yourself as safe as you can and I hope that my children continue to do the same as they get older.

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