Rants of a Food Allergy Mom

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I’m going to be very upfront with you.  Some of the emotions in this post are pretty raw, and ultimately exactly how I feel (a lot of the time, but not always).  Some days are better than others, but there comes a time when one must get things off their chest.  It’s Food Allergy Awareness Week, and if I wasn’t an introvert, this is what I’d shout to all of the non-food allergy parents out there to raise a little “awareness” of the realness of food allergies.

I’m jealous.  I know we’re not supposed to be jealous of others, but I am.  When we go to the local dairy farm and I look over at your kid peering in the ice cream case to make his choice, I’m jealous.  Just once I’d love to be able to take Nathan out for ice cream (spontaneously, at that!) and let him stand on his tippy toes to peer in at the rainbow of ice cream flavors….and pick whatever he wanted.

I’m jealous of those pictures you post on Facebook of your kid at the major league baseball game, holding a hot dog….that you didn’t bring from home.  You see, when we go somewhere we pack food.  Every.  Single.  Time.  How do we keep a hot dog warm after an hour drive from home, a long walk into the stadium, and the search for our seats?  We don’t.  He’d have to eat a cold hotdog, or something that didn’t need to be warmed up.

I’m jealous when you invite us to lunch after a play date at the park, but we can’t go.  It hurts to see everyone driving to the restaurant as we turn to head home….because I didn’t pack a lunch for Nathan, and the restaurant food would send Nathan into anaphylaxis faster than you could say “I’ll have a cheeseburger, please.”.

I’m jealous when we go to church or story time and the teacher brings an unplanned snack-that is unsafe and I didn’t know to bring a safe alternative.  I see your kid gobbling up their candy or treat out of the corner of my eye, while I squint to read the ingredient list.  I only read it because Nathan asked me to.  I know that he can’t have tootsie rolls or doughnuts, but for some reason he thinks there is hope if I check the label.

I’m jealous of your vacation.  You stay in a hotel and go out to eat at Rainforest Cafe, Olive Garden, and Texas Roadhouse.  We stay in a hotel suite with a refrigerator and microwave, pack every single meal in advance, and often eat several meals in our hotel room.  A vacation is not relaxing to me when it comes to food.  It’s harder and more tiring.  I have to cook, pack, and plan for every snack and meal, and then some.  I cannot run out of safe food for him.

I’m jealous that your kid can go to birthday parties and eat the pizza and the cake that looks like a racetrack with Lighting McQueen racing through sweet, buttery icing.  Thankfully Nathan is still OK with his mom-made cake with white Pillsbury icing with added sprinkles to make it more festive.  Someday this will change, I know.  Tears will flow, and he’ll feel down in the dumps that he’s the weird kid.  I dread that day.

I’m jealous that you’re not scared to send your kids to preschool or Vacation Bible School without you there.  You see, I can’t trust that anyone else would react fast enough if Nathan were having an anaphylactic reaction, or even realize he was having a reaction at all.  Would they be brave enough to give the Epi-pen, or would they just call 911?  By the time the medics got there, he could be in cardiac arrest….and it’d be too late.

I’m jealous that you don’t have to wipe down restaurant tables, grocery carts, chairs-you name it-every time you go out in public.

I’m jealous that you don’t freak out every time your kid coughs.  Your kid will go to school and never bat an eye at unsafe foods in the cafeteria.  He’ll go to a friends house and have a PB & J for lunch.  He may be on a little league team, and enjoy the pizza party after the big win.  He’ll never have to say, “Don’t touch me until you wash your hands” or “No, thank you” when he really wants to say “Yes, please!” when you offer to share your  brownie.  Oh, and Halloween.  I just thought of that.  That’s a whole new post.

I’m jealous that you don’t have to read food labels one, two, and three times.  You grocery shop based on taste, desire, and price.  I grocery shop based on safe and unsafe.

I’m jealous.  I get scared.  I’m fed up.  I am angry.  I’m tired of researching recipes.  I cry.  I’m disheartened with positive blood test results.  I’m terrified of food challenges that fail.  I get tired of people staring at me when I look like a crazy germ-o-phobe while wiping down restaurant tables.  It’s not easy.  I hate it.  Adrenaline shoots through my body and I shake when I think he’s having a reaction or gets a hive on his face.  I live and breathe Nathan, food allergies, and safety.  Sometimes I hate food, cause I get tired of thinking about it.

That’s a glimpse into my daily life.  Am I uptight?  Yes, a lot of the time I am.  Am I overreacting?  You the non-food allergy mom may think so, but I’m not.  Dealing with the the possibility of death at any moment of any day is anything but relaxing.

Yes, this a lot to take in, and may be rolling your eyes, but this is my life.  Food allergies have made me more aware of others, and I will listen to your parenting hardships if you need to vent.   Hopefully this post has made you more aware of food allergic kids and their families and how we feel while keeping our kids safe (and this is really just a few situations that are difficult).  I pray that you will be more accommodating, less judgmental, and stop rolling your eyes.  I promise we food allergy moms don’t act like this all the time (at least outwardly), and I promise that I have a turn-that-frown-upside-down response to these rants, which I will share with you later this week.  But, no matter how I feel, when I lay my head down to sleep at the end of the day, this little gentleman makes it ALL worth it!  God has blessed me with a curious, energetic, persistent guy and I love him, food allergies and all.

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Now it’s your turn to vent.  Please share, let it out, and know that others like you are listening.  Food Allergy Moms, what makes you jealous??

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57 thoughts on “Rants of a Food Allergy Mom

  1. This was a beautiful post, from not just a Food Allergy Mom but just a MOM. We all breath for our children and I am sorry your little dollface Nathan has food allergies. My Alexander has a nut allergy and it is no fun but we are able to live with it. I hope you find snacks that can ease your everyday life. Most of all I want to remind you of what a wonderful Mom you are to protect your child. That is our main job as parents to keep them safe. I also wish we didn’t have to endure all this but I hope your day to day job becomes more manageable. Thank you for your honesty and don’t be too jealous I am sure others peoples children are not as cute as yours. 🙂

  2. Thank You for sharing every emotion you feel with these allergies, because they are exactly how I feel as well. You nailed every word and left me crying, yet glad (which is sad, because I hate that others have to go through this) someone else knows what it is like. This life of ours is hard and sometimes I would love to go live on some island with only allergy families….they know us best. Thanks again for sharing.

    • Tracy,
      Thank you so much for reading. I’m glad we can relate, because that builds us up more in the end. I was just thinking this morning, wouldn’t it be great if all of the food allergy people could just meet in one place, for just a day? That would be soooo awesome and encouraging!
      Rachel

  3. As the now food allergy adult that was that kid. Im in tears. You, so get it Rachel! and you get it as a mom with fear of keeping her child safe, and as concern and care for Nathan and what he will go through as he grows up. I remember every Friday my 1st grade class got fast food brought in. I had to order mine 2 patties no bun. can’t even touch the bun and then made my bun and french fry and katchup sandwich .. OH THE LOOKS….. I still get excited when a chef comes to the table and says what looks good to you on the menu and says I can do that Ill just substitute whats safe for you and it comes out delicious. Of course there is still that moment of panic after the first bite, “did he really substitute? does he know what he’s doing? did they mix up my plate and take it to the wrong table before mine?” and then of course their is the feeling of inconveniencing the others at the table who have to wait longer to order because we r waiting on the chef. Knowing you and Nathan has brought so many emotional things to the surface for me that I have finally been able to identify with and understand and put into words to others instead of just hiding in the corner when food is served as i try desperately not to be noticed as i attempt to be busy while a plate is passed. knowing that if i touch it my fingers may break out and start itching. Finding a true Gilatto place that has tons of flavors to choose from that are truly just fruit and sugar still gets me all giddy and I have to control my desire to try a taste of every flavor just because I can. I realize how much I have let my guard down as an adult because its just easier to gauge the severity of the reaction then just avoid one all together. I actually pick and choose, ill take watery eyes and a runny nose for a few days with that fried chicken or no I think i want to avoid a 100mph drive the the ER after accidentally grabbing your glass of milk instead of my cup of water so Im gunna strategically place my glass in between yours like i have OCD.. I still count my blessings every day my kids have not developed my allergies yet. But Im still am on high alert if someone offers or even has nuts or dairy in the room with my kids. Just habit i guess.

    • Jessica,
      Now I know the reason I got the job at EC-to work with and meet you! Thank you so much for sharing! You’ve helped me so much, too, and I’m so glad we can support each other. I can’t wait to hear all about your fun, safe-food-filled trip to Disney!
      Rachel

  4. I could relate to everything you were posting about. Especially when my daughter coughs or says her tummy hurts. It scares the you know what out of me and people think I am being overdramatic and it hurts my feelings because I am just looking out for my daughters LIFE. I just do not understand how they do not get that. If it were their kid it would be a completely different story.

    • Sumbal,
      I’m so glad I’m not the only one that scared me when Nathan coughs or has a tummy ache. At times I feel like the only one. Other people will never get it, we can just try to spread the awareness so that if they were in charge of our children, they would protect them as well. Thanks for commenting!
      Rachel

  5. This summed up exactly what i feel all the time- scared/jealous and i feel like i’m always stressed out that my kid is going to eat something he shouldn’t. While his allergies don’t appear to be as severe as your son’s, i completely sympathize and understand. Thank you for posting this! Agree with Cristina, your son is adorable!

    • Nina,
      Stressed out is right! I can definitely relate. My goal is to find a healthy balance in this food allergy thing so that I am not so uptight. I hope to pass this on to my readers so that we can all relax a little….while still being super safe. It’s a fine line, but we can do it!
      Rachel

  6. Thank you for this post! It says everything I’d just love to shout out from the roof tops! Tears came to my eyes as I read the part about freaking out every time your child coughs. That is how my son’s 2 anaphylactic reactions started…mild coughing which turned violent in seconds. My son is now 6 and every time he coughs, he looks over at me and says he’s fine or his food went down the wrong pipe bcs he still remembers how different his coughs were even though he was only 3 yrs old. The whole VBS situation hits close to home as well. Can’t wait to read your future response bcs am sure it’ll be similar as we wrestle with the fact that God is the Great Protector and cares and loves for our children more than we do but balancing the fact that we need to do all we can to keep our kids safe, too!

  7. I am not a parent of a child with a food allergy but I do have a dear friend with a precious little girl with a deadly peanut allergy. Since becoming friends with the family I have become so much more aware of food allergies and the danger these kids are in Every Single Day. I have actually told off a woman in line at Kroger who was complaining to the cashier about having to go out and buy a different snack for her son’s class because there was a food allergy. When this little girl comes over to my house I always plan our parties and the food so that there is no danger. I also clean everything she might come in contact with just in case and I tell anyone else that is coming not to eat peanuts that day. I check all labels and double check with her mom to make sure everything is safe. I throw a Christmas party (and planning on an Easter egg hunt) for my son and his friends and I plan it JUST so this little girl can come and be safe at two things she usually can’t attend anywhere else. It irritates me to no end to see the lack of compassion so many show today though I’m sure many of these people would want the world to do everything under the sun for their own children.

  8. I am so sorry that any person has to go through this. It makes me angry that people act like you are overreacting especially when he has deadly allergies. My 3 year old daughter has a peanut allergy and is gluten intolerant and I have crohn’s so there are quite a few things I cannot eat. It is hard to go out to eat and make decisions. My girlfriend has a son who is allergic to many things and she writes a blog allergysensitivekitchen.com and converts recipes. Maybe some of them would work for you.

  9. Your comments are so right on track that this had me in tears. Honestly I have thought each thought at some point, sometime I have had more than one occur at a time. But never have I thought of them in an entirety or listed them as you have. Such an impact! Thank you for sharing your thoughts. Stay strong! Us allergy moms understand completely.

  10. Amen, amen, amen! As I read this, I am struggling with the decision of whether or not to finally do VBS this year and am trying to muster the energy for a review of the hard won 504 plan. Tonight I didn’t want to make dinner, and my husband asked if I wanted him to pick anything up. Of course I did, but I am SO tired of our two options. We wanted to go away for a weekend to one of our favorite places as a young married couple, but I could not find any safe restaurant options and did not feel like scrubbing a strange kitchen and bringing everything with me, so we just stayed home. I hear you loud and clear.
    Furthermore, I just want to take my daughter out for ice cream this summer. 🙁

    • Jeni,
      I understand the struggle with VBS. I would love to send Nathan, but not sure it’s the best thing for us right now. He’s a bit young for it anyway, but I think I need one more year to work up to it! How old is your little one and do they go to preschool? I have kept my son home for now and did PreK with him as a relaxed homeschool. Thanks for reading!

  11. Amen! Your post was like it came from my own mouth and it stinks, but I am so glad to not be alone in these feelings!

  12. What a great read! It is amazing and comforting to hear another mom talk about all the things I think and feel everyday. This is something everyone should read…..maybe then we’d make more steps in the right direction as a country in dealing with this epidemic! Thank you for such a moving, thought-provoking, and insightful piece.

  13. Thanks for writing this. There are other moms “out there” who have similar issues and feelings and not only allergy moms. My son is 8 and has food allergies since he was 2 (tree nuts and mustard). Just when we got use to the whole idea, at age 6 he is diagnosed with type 1 diabetes. Thus there is additional label reading, 10 finger pricks a day and a shot for every ounce of food that goes into his body. Shots that have to be administered often in public with others looking like we are weird because they do not understand type 1 and type 2 and assume we must have given our child too much sugar. Then one year later he is diagnosed with delayed food allergies to dairy (EoE). He actually says he wishes that he would only have diabetes and not food allergies. Moms of diabetics have to stay up at night and constantly worry that they could die from a simple miscalculation, too much exercise, not enough food, growth spurts, etc. I have always told my child that someone has it tougher. Some days I feel that we are that example to many children and parents. This day and age at least there is a lot of support rather than a decade ago. I know that our children will be stronger by experiencing disappointment and a lot of other skills that come with these hardships.

  14. Everything here, Rachel! You’ve said it perfectly! I just wrote about FAAW myself and the things that I wish everyone would know. I KNOW you aren’t overreacting, you’re just trying to keep your child safe. {hug}

    • Kevin,
      I just love when a dad is in tune with their child…especially their food allergies. I am sure that you are a huge mentor to your son and that you do all you can to keep him safe-that’s awesome!

  15. I can relate on so many levels and we do not have any allergies but other medical problems. I have been there when someone says why don’t you just leave your kid in the nursery and then stare like something is wrong with you. The overwhelming fear everytime he falls should I go to the ER or get blood count. The multiple daily skin checks for new bruises and rashes. The task to try and find a “safe” vacation spot for the whole family while making sure you are only an hour away from a major childrens hospital. The fear that he will not be able to play any sport he wants or even sending him to preschool. When something is wrong with your child especially when it is rare and so serious it consums you whole life. But like you when I go to bed a night I wouldn’t take anything for my sweet little boy that God has blessed me with and I pray he gives me the wisdom and knowledge I need to provide for him.

  16. Pingback: I’m Not There Yet… | MapleMouseMama

  17. I am so sorry you and Nathan are going through this. Don’t ever worry if people roll their eyes at you. You are a great mom!

  18. I relate 100%! Vacation is not relaxing, my heart aches when my 2 year old asks for ice cream, I wish I could give her any food anywhere, my heart skips a beat when I see hives on her face, etc. I cry, too. Thanks for being brave and writing what so many of us food allergy moms think and feel.

  19. I did not read all the comments….I did read the whole article. I smiled and I cried. I have a son with a food allergy and the unfortunate thing is the people who need to read this, won’t. The people who believe it is their children’s “right” to have a pb&j sandwich over your child’s right to live. A lot of comments say they can relate to this article, which I totally agree. And which I will share….share with his teacher, share with his principal, share with our family, share with our neighbors, share with anyone and everyone. Parents of children without food allergies just don’t know, I won’t say they are ignorant, they just don’t know that any and every situation can be a life-threatening situation; and we (everyone who has commented) need to be that catalyst in an attempt to educate. Thank you so very much. Let the “share”ing begin!!!!

    • Bret,
      You’re right, the people we really want to read this stuff are the ones who won’t. I have never understood why food allergies are so hard to understand, but the majority of the population can “sympathize” with kids with other diseases/ailments, but never ours. I’d love hear everyone’s reactions when you share this with the non-food allergy crowd….check back in and give me an update if think about it! Thanks for reading!

  20. Thank you for your words. They are exactly how I feel everyday. Most days are good days but there are a lot of the sad/angry days too. I’m glad I found your blog as we do live in a world where most people don’t understand. It’s unfortunate but nice to find someone who does. 🙂 Thanks again!

    • You’re welcome! It’s one of the reasons I started this blog-so that we can all relate to one another and be of support to others living in the same world as us. I have sad/angry days, too, and today is kinda one of them actually. I try to take a deep breath and realize that tomorrow is a new day!

    • New Allergy Mom,
      I think I cried while writing it, and it did explain exactly how I feel sometimes. The good news is, we don’t always feel like this as allergy moms. Yes, there are rough & sad days, and there are a lot of good, happy days, too. Thanks for reading, and I hope this blog can be an encouragement and help to you!

  21. When I read your blog post, I was in tears. My son isn’t allergic to foods, but he was diagnosed with hyperactive disorder and asthma caused by food dyes when he was 3 so we had to take him completely off them, and I understand the frustration one feels to police foods and the looks you get from parents and others who just don’t understand when you tell them he can’t eat a class snack they brought in. But there is a light at the end of the tunnel. My now 12 year old son has been policing himself for 7 years and now actually likes taking his lunch (he gets to pack what he wants!) Can I make a suggestion about a vacation? Rent a vacation home. They are about the same cost as a hotel suite for a week and you get an actual house with a full kitchen to make meals, bedrooms, living and eating areas. We recently did that on a trip to Maine and it was the best decision we ever made. The owner was so accommodating for my allergies, cleaning the entire cottage.

    Oh, I also copied the website for this address and sent it to a principal friend of mine in another state where it is very difficult for people with food allergies, asking him to share it with all his parent and teachers. Gotta get the word out!

    • Thanks so much for stopping by! I’m glad you figured out what made your son have asthma and a hyperactive disorder. Sounds like things are under control for you and your son now! As for the vacation home, we do that when it’s possible, and actually just got home from our vacation that was at a house rental. It definitely it the way to go!

  22. I love your post! I often tell myself it could be worse. My daughter is allergic to dairy, eggs, nuts, fish, shrimp, and penicillin. I see kids with leukemia, cancer, and other life threatening diseases and tell myself that Sydney only has food allergies. It still doesn’t make it any easier for me or her. I would love to bring more awareness to my city, but I don’t really know where to begin. Thumbs up to all of the food allergy parents that try and make our children’s lives as normal as possible.

    • Hi Yolanda,
      Thanks for reading! Yes, you’re right, our kids could have cancer or other life threatening diseases. What size town do you live in? Maybe I can give you some tips to get started in how to bring awareness to your city.

  23. I am a food allergy kid and I go through a lot of the same things you do. Not being aloud to eat things at parties and gatherings with friends, packing a meal most everywhere I go, worried that I could react any minute. I also have E. E (Eosiniphilic Esophagitis) which makes it hard for me to swallow some foods and choke if they don’t go down right. Because of this I was strapped to the hospital bed with an IV in my arm and a board on top of that so I wouldn’t pick at it before I had even had my first birthday party. But I have made it to age 11 without needing to use an epi-pen or having to call the ambulance and I pray that others like your son Nathan will be able to say the same someday.

    • Lili,
      That’s great that you’ve never had to use the epi-pen in 11years! We’ve had to once, and hopefully that’ll be the last time! Thanks for reading and commenting 🙂
      -Rachel

  24. Thank you for this post. I am so thankful I came across your site today. We are just several months in to my 16-month-old’s peanut allergy and I already feel many of these emotions and have anxiety of those to come! We are looking at the positives every day, but you can not ignore reality either and finding that balance is something I’m having to learn how to do! Can’t wait to read more of your posts.

    • I’m glad you can relate! Food allergies are an emotional roller coaster, and even though I still experience these emotions 4 years into our journey, I will say it does get easier!

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