Today was one of those days. I'm not sure what the first trigger was, but there were so many... Monday is grocery shopping day. Normally, I pile the boys into the car and we go to the grocery store together. The managers know us well and are so accommodating when the allergy friendly check out line isn't open. Either they open it for us or lead us to the 10 items or less counter (with our entire cart of groceries) and explain that it's okay for us to check out there. But starting in November grocery trips have become very different. You see, due to the holidays, grocery stores bring out all of their peanuts and tree nuts (there is a difference) and tend to place them in the most convenient places. At Wegman's, the only store that offers allergy friendly food here in town, these nuts are located in the produce isle, out in the open for people to grab and bag. They are at the perfect level for Adam to touch and possibly eat. Some may say, "Well, can't you avoid them, just not go down that isle?" That's easier said then done, especially when they are directly across from peppers, parsley, lettuce, spinach, and so many other essentials. Then one must consider that other people bring their shopping carts down the isle too, causing us to have to move even closer to the nuts. Okay, so a possible next argument, "Just make sure he doesn't touch them!" Easier said then done, especially when there are two toddlers to tend to, while grabbing food. Adam is a professional at grabbing cans, jars, boxes, and whatever else he can find, off of shelves and bins. I can not guarantee he won't touch anything, unless I don't bring him at all. So, my shopping trips take place late at night, after the kids go to bed. I've enjoyed the alone time and definitely appreciated the time to study labels more closely, but the inconvenience of not being able to go to the grocery store when I want to is quite annoying. Especially today. Jason worked late again.
We ran out of allergy friendly cereal, a staple for the boys for breakfast and snacks. We are out of allergy friendly hot dogs for Adam and chicken nuggets for Owen. We are out of french fries, yet another staple. Owen's allergy friendly milk is down to the last drop. And snacks... It's hard enough trying to come up with meals with such limited diets! I'll admit. I panicked today. What was I going to feed my kids? It's not like I can just give them anything. Fortunately, Owen likes homemade allergy friendly french toast and Adam likes cinnamon toast. I had a few allergy friendly chocolate chip cookies still in the cookie jar which helped. But still... It was a long day!
While Owen was napping, Adam managed to get hold of Owen's apple juice sippy cup. Adam knows how to drink from a sippy cup. When I found Adam, the juice was completely gone. Panic again.
I won't go into more details, but there were more than three other incidents today involving crackers, bread, and leaves. Fortunately all did not have to do with Adam. Both boys ended up being medicated.I think I do so well with the boys and the challenges they have come with, but days like today make me second guess just how well I do.
Tonight I found myself very emotional about everything. I cried as I read other allergy blogs. Living with food allergies is SO TOUGH! Especially when there are so many. Even if Adam is diagnosed with Angioedema and he is treatable, all of the allergies won't go away. The doctor says they'll just be more manageable. Again, that's if the type he has is treatable. I'm hoping to get him tested tomorrow or Wednesday. Results shouldn't take too long. I'm guessing a week at most.
As I was reading other allergy blogs tonight, which by the way, is the best medicine ever, I came across some pretty amazing things that I LOVE and want to share. I've found that it's so hard for close friends and family to fully understand the kids' allergies and the impact they've had on our lives. Some may think I'm overly protective or obsessed. Others just try to bring comfort when I need it, yet have no way of understanding and so the comfort doesn't come. I really do appreciate all the support we do receive from family and friends. It's just as hard if not harder for Jason and I to have to accommodate the boys' allergies. It's been a complete lifestyle change.
Lately I've been asking myself questions, partly in fear of the future. Can schools really provide a safe environment for the boys, especially Adam, when it is time for them to go to school? I've read up on 504 plans etc..., but Adam has SO MANY allergies. Will I have to home school? The boys started toddler time at the library. We went once and then learned that there are parties with treats. Picture twenty 18 month old to 3 year olds having a party with treats. I had to dis enroll because the environment was so unsafe. There are posters placed in the nursery at church listing approved snacks that the boys can eat. All of the other nursery children and their parents have been asked not to bring any sippy cups or other snacks in, because they pose a danger to the boys. If the nursery leaders can't provide a safe environment for the boys, then we can't be there. We have stopped attending all ward activities and functions, because they all have buffet meals and snacks. With so many people and so much activity, food is everywhere. It dawned on me the other day that the boys may not be able to serve missions. I asked the Elders when they came for dinner one night. They said, "Most likely no, with the raising of the bar." After, they did mention that they could probably serve missions from home, most likely in Palmyra, just coming home at night. That gave me hope. I was talking to my best friend on the phone expressing my frustrations about the allergies and mentioned that I was worried that the boys would be looked upon as so different, unable to participate in so many things. Would they ever find a wife who would love them and take care of them? I know this is all stuff in the FAR future, but it's real.
So tonight, as I was reading through posts, I stumbled across this and wanted to share it. It comes from a website http://www.allergymoms.com/, listed on a website http://www.itchykidsclub.com/.
10 Things Children with Food Allergies Want You to Know
By Gina Clowes
1. I long to be included. I would like to look, act and eat like everyone else. I’d like to buy my lunch and sit wherever I want. I know I can’t, but I am so happy inside when someone cares enough to provide a safe potato chip, cookie or Popsicle for me. It’s nice when I can have something similar to what others are eating but I love it when I can eat the same thing as everyone else. Whenever it’s possible, please think to include me!
2. I’m scared I could die from my food allergies. I’ve heard my parents and teachers mention “life-threatening” food allergies and I remember having some reactions where I felt very sick and really scared. I could see how frightened my parents were too. Sometimes, I could use a little reassurance that I will be okay.
3. I feel like I’m the only one sometimes. If you have a support group or another way to arrange for me to meet other children who have food allergies, I would really like to know that I am not the only kid who has food allergies. Having another friend with food allergies in my classroom or at lunch time helps too.
4. I get confused when grown-ups offer me food. I know I’m supposed to be polite and listen to grown-ups, but my parents have told me I am only supposed to take food from them. When you offer me food or especially candy, I’d like to take it but I’m not sure about what I am supposed to do.
5. I get itchy spots sometimes when grown-ups kiss me after they’ve eaten something I’m allergic to. I get itchy spots when your dog licks me too. I’m not quite brave enough to tell you this so I’m hoping you will remember that if you have just eaten something that I’m allergic to, I may get hives if you kiss me soon afterward.
6. I’m embarrassed when people fuss over what I’m eating. I know I have to eat my own safe food, but it’s easier for me when I’m not singled out. Sometimes, it’s embarrassing when grown-ups ask lots of questions. I love to fit in more than anything.
7. I hear all adult conversations about my food allergies. My ears perk up when I hear grown-ups mention my name or food allergies, so don’t pity me or act terrified because then I get scared. Food allergies are just one part of me. Let me overhear you talk about all the other wonderful things about me!
8.Sometimes I’m sad about having food allergies. It’s hard to be the only kid in class not having a cupcake and eating something different from my box of “safe treats” especially when there are about 20 other birthdays in my class. I know it’s not the end of the world, but from my perspective, it’s tough at times.
9. I’m watching you—Mom and Dad! You may think that I’m too little to notice, but I see that you went back home to get my Epi-Pen® when you forgot it. I see that you read the ingredients on the Smarties every time. You are my role models and I am learning how to manage my food allergies from you!
10. I will do about as well as you do. My parents “can-do” attitude will help me cope with the challenges of living with allergies and ensure that food allergies don’t stop me from being everything I was meant to be!Even as I read this through a second time, I tear up.
Okay, so now to the good stuff! The Itchy Kids Club website is WONDERFUL!!! I found so many great products that I LOVE and WANT for the boys. It opened me up to a whole new world of possibilities. At this point, it's pretty much impossible for Owen and Adam to understand their food allergies. Owen knows when we tell him not to eat something, because it will make him sick, that he shouldn't eat it, and he's such a great help with Adam when it comes to Adam sticking everything in his mouth, but he doesn't know what an allergy is and he doesn't know what he can and can't eat. It is going to take a very long time to educate him and an even longer time to educate Adam. It's funny, we make a point to avoid books, games, and toys that are foods or about foods, just because of the confusion it causes with the boys. An example is the board book: Yummy Yucky. Foods that the book teaches are yummy are very dangerous for the boys. But did you know that there are amazing books, videos, and music out there to help teach the boys about their allergies? I guessed there was a book or two, but definitely not music.
So here are a few things that I REALLY REALLY WANT to help the boys, family, friends, teachers, and myself cope and become more educated with allergies. Feel free to check them out on The Itchy Kids Club website,especially the CD of music. You can hear samples of every song. The books are available on Amazon. These products really brightened my day and helped me to have fun with food allergies again, despite how NOT fun they can be.
1. Music CD: You Must Be Nuts! Music All About Food Allergies, By Kyle Dine
2. Book: Ask Before I Eat, By Ellen L. Ferrell
3. Book: The Bugabees: Friends With Food Allergies, By: Amy Recob
4. Book: A Day at the Playground with Food Allergies, By Tracie Schrand
5. DVD: "I'm Not Nuts": Living With Food Allergies
6. Book: Sophie-Safe Cooking: A Collection of Family Friendly Recipes that are Free of Milk, Eggs, Wheat, Soy, Peanuts, Tree Nuts, Fish & Shellfish, By: Emily Hendrix
7. Book: One of the Gang: Nurturing the Souls of Children with Food Allergies, By Gina Clowes
8. Book: The Itchy Kids Club, Silly Poems for Itchy Kids, By Jill Grabowski
Just recollecting the contents of each book, DVD and CD I feel better already!