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    What It’s Like to Be An Allergy-Mom

    April 21, 2015 •  33 comments.

     •  Blog, News

    mom-with-boyThe food allergy community is a powerful one.  None of us chose to be part of it, it chose us.  And stories, successes, heartaches and strategies are often shared across networks and social media.

    Like the piece below.  Dawn Crowe, a mom with a child with food allergies, shared this on her Facebook page this morning.  It was written by Carissa K.  Her words ring so true.  Allergy moms are everywhere, from the beautiful Julie Bowen to the ones on the sidelines at soccer games, and as the mom below writes, we are all “humble and grateful and reminded of just how fortunate we are that we are the parents of a child with only food allergies.”

    “What it’s Like to Be an Allergy-Mom”

    1. As the parent of a child with food allergies, it makes us crazy when people make any sort of assumption about food allergies other than this one assumption — a food allergy is a life-threatening condition that causes children to stop. breathing. immediately. It’s very real… and it’s very scary.

    2. As the parent of a child with food allergies we want you to know that this is not a lifestyle choice. While it’s admirable that some people choose to eat healthy and be aware of the ingredients in their food, we aren’t standing in the grocery store aisle reading the label on everything that goes into our cart as a hobby. We’re studying those ingredients to make sure there’s not an obscure ingredient that could kill our children. (Did you know that caramel coloring is made out of dairy? Are you familiar with the difference between sodium lactate and potassium lactate?)

    3. As the parent of a child with food allergies there is not a playdate or school activity that our child will attend without us having a discussion with the hosting parent, event chaperone or teacher first. Every event my child has ever participated in (ever!) from t-ball to school to summer camps has always been preempted with a medical conversation first. We know we’re perceived as high-maintenance parents. And we feel badly about that because the level of diligence we’re forced to have about the subject of food allergies may not be consistent with the level of diligence our personalities would normally reflect.

    4. As the parent of a child with food allergies we have laid awake at night, wondering if we’ll be able to spot the signs of our child’s throat closing. We’ve been told that anaphylaxis can happen in less than two minutes, so not only do we wonder if we’ll be able to identify this emergency, we wonder if our child’s teacher, babysitter, grandparent, recess monitor, friend or coach will know when our child can’t breathe.

    5. As a parent of a child with food allergies we have laid awake at night, wondering if our child will ever be able to attend a party in college or share a random kiss. And if he does, who will carry his epi-pen?

    6. Speaking of which, as the parent of a child with food allergies we leave the house remembering the basics like phone, wallets, keys — and epi-pens. We know not to leave them in a car that is too hot or too cold and we always carry at least two, if not seven. Even with insurance, they are $25 a pop, so we treat them with the utmost respect for the year that we have them before they expire. But that’s all ok, because those little devices carrying a shot of adrenaline could save our child, or at least sustain them, until the ambulance arrives.

    7. As the parent of a child with food allergies, we sit outside every birthday party or sports practice while other parents leave.

    8. As the parent of a child with food allergies, we balance the emotional impact of being a helicopter parent against the medical threat of having our child go into anaphylaxis when we’re not around. We feel guilty and scared of both.

    9. As the parent of a child with food allergies, we have never relaxed, sat back and actually enjoyed or tasted a meal in a restaurant. Never. You see, we spend those meals playing and replaying the emergency plan in our head while quietly observing our child’s breathing as he enjoys his meal.

    10. As the parent of a child with food allergies, we regularly attend medical appointments in big time children’s hospitals where we can’t help but see other patients and deeply suffering families. And upon this realization, we are humbled and grateful and reminded of just how fortunate we are that we are the parents of a child with only food allergies. While our child has a life-threatening medical condition, it is manageable. And as long as we have help from you and others in managing it, our child is alive — and that’s really something!

    This article first appeared on Huffington Post. To read more of Carissa K.’s work, please visit http://www.carissak.com/

      33 Responses to “What It’s Like to Be An Allergy-Mom”

      1. Shirl

        I can only taste the anxiety that my daughter goes through every day of her life.
        I have seen her beautifully balance their life as a “normal family.”
        I have seen her weighed down like a pack mule with special foods, drinks, medication, and ointments every time they leave the house.
        She home schools, prepares special meals and searches out activities so that our grandson is not isolated from the real world.
        She is nothing short of the most fantastic mother I have ever seen.
        When are we going to understand what is causing this horror so that no more have to suffer?

        • Your daughter is so lucky to have such an extraordinary support in you. Thank you for your compassion. And yes, we need to stop this epidemic.

        • Alisha Kuempel

          Shirl….YOU are an amazing mother to love, respect, and support your daughter and her ‘choices’. (Some consider them choices, while we allergy moms don’t feel like there are much ‘choice’ when it comes to doing what we have to do to protect our children). Thank you!

          And this article was SPOT ON! 100%!

        • Catherine Niemann

          This was great to read. I am amazed that you only pay $25 for epi pens…we pay over $400 (this is with insurance and the $100 off coupon) and unfortunately at least once a year it gets left in the car and we have to pay it again. I would have so many backups if they were $25. Great article

      2. Liz

        I’ve read so many posts about being a parent to a child with food allergies. This was the best I’ve ever read. It’s so comforting to know all of the thoughts expressed above are not mine alone. i seriously cried when I read it. Carissa K, thank you so much for writing this beautiful post.

      3. Jenn

        #6, even with our health insurance & the $100 off coupon, we still paid $200 for our epipen jr. Life saving liquid gold is what I call it!

      4. Kerry

        This is so true..it gets different as they get older too. Harder b/c there’s less parental control , but easier b/c your child gets it and knows better. I love 3,5 ,6 and esp 10. Food allergies are nothing compared to what other people are going through with their kids. I am so lucky for his good health otherwise, and I have to remind myself of that every day.

      5. Olivia

        So true and so well written. Number 9 is my favorite. Thanks for taking the time and effort to espress this beautiful article.

      6. Angela

        I couldn’t have said it better. Thank you for your words.

      7. Mandy

        You can get an epi pen copay card from the doctors/allergy office. This year they cover 3 2-packs per kid for $0! It is incredible!! Ask for it if they don’t offer it! They don’t want people feeling the pressure to split the 2packs since 40% of reactions require a 2nd injection! It’s a great deal! I don’t want anyone to have to pay!! But I do want everyone to be well equipped in the case of anaphylaxis!!

      8. The Atomic Mom

        Great list. I especially, try and remember #9. We *only* have peanut and tree nut allergies, and for that I am grateful.

      9. Elizabeth Purdy

        Thank you so much for this! I feel like you took the words right out of my mouth. We are such a misunderstood people, aren’t we. Much love to you and yours, from someone who actually “gets it.”

      10. Jen

        This brought tears to my eyes because it hit so close to home. I’m sharing on FB – hopefully others will read this and realize I’m not trying to be an irrational helicopter parent – I’m doing everything in my power to keep my son safe and alive. Thank you!

      11. Melissa

        This is great! I know I’m not alone when I read things like this. My son is 11 years old and I’m lucky he has only had 2 close calls with his food allergies. He suffers from migrains 2 to 4 days a week because of his food allergies. Being allergic to fish, shellfish, peanuts, corn and bee stings I am faced with the reality he is in danger everyday.

      12. Denise

        I also am the mother of a child who had good allergies. I have dealt with it for 11 years. Actually what am I saying “I” for? It’s WE! My whole family. My son is now 14. We found out at the age of 3 that he fatal food allergies. I felt as if my world had collapsed and I didn’t know how I was going to handle this. I needed to get educated as soon as possible, as there are no room for mistakes. But happily 11 years later, we have handled it and so has he. Good allergies SUCK,,, but they are manageable. I believe that in my sons lifetime there will be a cure or a vaccine. There are just too many people these days with food allergies. So much research is being done…thankfully

      13. Anne

        As an adult who lived with severe peanut, egg and soy allergies from early childhood, and as a mom with four kids with varying degrees of food allergies, I have to say this article really irks me. Describing families with a child with food allergies as “deeply suffering” is absurd. Yes, it can be worrisome at times, but compared to some of the severe and complex medical issues some families have to deal with (e.g., ever raise a child with cystic fibrosis? Or muscular dystrophy? Or profound autism? Or childhood cancer?), families with food allergies get off easy. Your child’s food allergies are a non-issue unless they eat a forbidden food. Most parents with kids with other severe illnesses would love to wash away their child’s challenges as simply and easily by the mere act of controlling what their child consumes. Really, this isn’t the major issue it is being made out to be here. Step away and recognize how lucky you really are!

        • Angela

          Anne. Read number 10. Being the parent of a child with food allergies is extremely stressful. Watching your child fight for his life because he has touched something (or been close to something) is terrifying, heart wrenching and out of our control. It is all consuming and extremely difficult. However, due to frequent trips to hospital where we see kids with awful conditions we know how lucky we are. Those who have lost their children to allergies are not lucky though, are they? My child doesn’t have to eat any of his allergens, in fact he has NEVER eaten any of his allergens yet has suffered anaphylaxis. Health conditions are not a competition. One persons problem is just as serious, to them, as another’s problems are to them. Sometimes my son DOES deeply suffer due to his allergies, as do his brother and his parents when we witness it.

        • Angela

          And the author was describing the other families as deeply suffering, not food allergy families.

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