Living with Food Allergies

I get asked a lot what it's like to have daughters with many allergies. I never know quite how to answer this question. There are so many things I could share, but I hate to sound like a know-it-all. I'm not. I know a lot about our situation, but every child has to deal with it differently. But if you are curious, without any further adieu here's the long version of what it's like.
*In lieu of the youngest's allergy appointment yesterday this post is a little emotional. You've been warned. :)
  • my oldest is allergic to eggs, dairy, pears, peaches and sesame. At one point she was also allergic to strawberries and pineapple too.Whether or not she out grows these allergies will be permanent by age 12.
  • my youngest is allergic to eggs, cashews, pecans, walnuts, almonds (is very likely to develop a peanut allergy) and dairy upsets her stomach. She will never outgrow her nut allergies. The others are probable. 
  • I read every single label for the food we buy at the store. I could tell you now without looking the items in each isle that we can purchase. We have 1 option for bread in the bakery section, 1 box of fruit snacks, and 1 brand of 'yogurt' ($1 per cup!) at our grocery store. It does make shopping fast though!
  • we eat a TON of veggies, and thank goodness my daughters love them. In fact the oldest feels denied if I don't include broccoli or cauliflower with her meals. Her bed time snack is carrots. Seriously. 
  • we drink rice milk, eat soy yogurt, and coconut butter. The entire family is now on this plan because this momma isn't making 4 different meals for dinner. 
  • We often have to turn down invitations to parties or leave when refreshments are served. I know there will only be cake (with eggs) and ice cream (obviously with milk) for dessert, and I have to tell my daughters so many times that certain foods make them itchy, that I avoid the situation when I can. I haven't learned to just bring desserts with me that they can eat, because we never buy them. I need to remember to do this. 
  • When my oldest does accidentally eat something that she shouldn't, it takes weeks, and sometimes months to get her skin to return to normal. It is a constant cycle of meds, and bandages, and baths, and lotions. 
  • she can use up to 14 medicines in one day. 3 creams +lotion in the morning, 3 creams +lotion at night and 2 types of oral medicine on a 12 hour rotation is her typical routine. 
  • the type of eczema she gets, that is caused by her allergies, is heightened at night. She hasn't slept through the night for an entire week ever in her life. I'm sorry I just don't feel bad for new moms that complain about how their 6 week old won't sleep through the night yet. My daughter is 182 weeks and doesn't sleep through the night. 
  • Even when she is sleeping, she will sleep scratch. She will scratch until her legs/arms bleed without even knowing it. She wakes up bloody and sore and scared, almost every night. She is so used to seeing her own blood, that I have a feeling she will be a doctor when she grows up. It does not phase her. 
  • Every morning I get to stain treat her jammies that are now spotted with blood. We don't buy expensive pajamas anymore. 
  • I feel bad at times that my girls miss out on "kid food": chicken nuggets have egg in the batter, mac and cheese is milk, ice cream, cookies, brownies, cakes, peanut butter and jelly, chocolate chip cookies, pancakes, waffles, corn dogs, cheesitz, gold fish crackers, rice krispy treats, cheese, Alfredo sauce, pizza, any chocolate candy (try buying something other than jelly beans at Easter that isn't chocolate!), and only being able to eat about 1/4 of the Halloween candy they collect.
  •  I love that fact that they have to eat healthy, and being young they don't notice. Yet.
  •  Our kids with be "those kids" in preschool that all the other mom's hate because they can't bring in cupcakes for their kids birthday. You're welcome.
  • Then there are the food items that at first glance you think are fine like chips. Unless they are plain, it probably has milk in it. sour cream and cheddar, sour cream and onion, even most brands of salt and vinegar-milk. Taco seasoning packets-milk. frosting in a can-milk, ranch dressing-eggs, mayonnaise-eggs, most salads have cheese on it. It goes on and on. 
  • Nothing is fast. Almost everything is homemade, and we pack a back-up meal with us where ever we go, along with an epipen. 
  • we feel like they skip almost everything unhealthy that we give our kids all the fries they can eat. She wants 2 small fries from Wendy's, it's all hers. 
  • I can tell you the most efficient way to un-bandage and re-bandage a leg at 3 in the morning in the dark and half asleep. I have that process down. 
  • We received a medical bill last month that was in the high $5 hundred range. This is not unusual. 
  • The only lotion that has worked on their very sensitive very dry itchy skin is $15 a tub. They have used more lotion in their lives than I have in mine. 
  • wool pajamas are out it makes their skin too dry.
  • Even with all of these 'inconveniences' my daughters still live a relativity normal life. The oldest is learning what foods make her itchy, and knows to ask when a new food is introduced. She is so good natured about when we have to tell her no. I love her for that. 
  • I also love our families and friends who never ever make us feel like a burden for adapting every single meal we have as a family to accommodate our daughters. My parents and in-laws even find it rewarding when we can have an extremely similar food. Fudge made with vegan cream cheese surprisingly tastes wonderful. 
  • I can give you vegan substitutes for almost any recipe now, and so we can add some things back into our diet due to the substitutes. We don't have pizza, we have stromboli and just leave the cheese off of the kids. They don't know it's in our food, and everyone's looks the same. Vegan Alfredo sauce and vegan waffles are the newest additions to our diets, and all taste about 95% close the the original made with the good stuff. 
  • Day-to-day it's not bad, it's just the little things that really kill me. Saying no to the very generous deli man that offers my girls a slice of cheese every single time we go, or when my girls get handed a little fun sized candy bar that they can't eat, when friends drop off cookies, or not dying eggs at Easter. It's those types of things that remind me how hard they have it. 
I love them and am so grateful that they don't have any physical limitations. I see parents that have to struggle with that and kids that have to live with it, and I just die for them. I have been blessed with two beautiful intelligent little girls and I wouldn't want it any other way. 



realmaplesyrup said...

I wOnt even begin to understand what you and Adam might be going thru-and of course the girls-but strictly on a parent level I can attempt to intellectually empathize what it must feel like. It takes a special kind of person to have the patience, dilegence, and dedication to deal with something of this level. The girls are lucky to have parents that love them so much.

Shalise said...

I never realize all the work that goes on behind the scenes to accommodate these allergies. With all the attention and work you do for them, they'll probably try more foods than the average kid-they were meant to come to you for sure!