A Half Full Attitude on Life

There are plenty of downsides to food allergies. It’s not a life I would choose if I had a say in the matter. However, I believe you should make the best out of life with the cards you are dealt. With Thanksgiving approaching, I have decided to make a list of the positives that have come into our lives because of allergies. Some days are more difficult than others, but today (and most days) I choose to be thankful for the healthy life of my child despite the always present risks.

1. You get to try new foods that many other people haven’t had before.

Peanut butter substitutes are not that bad. Sunbutter (made from sunflower seeds) is actually really tasty, and who knew you could make something from GOLDEN PEAS taste just like peanut butter (congrats, No-Nut Butter).

2. You have the opportunity to learn how to better communicate with others.

You must learn how to step outside your comfort zone when needing to make a special request or ask specific questions about foods and events from your family, friends, and even strangers.

3. You are able to grow closer as a family.

When you are faced with a difficult situation that cannot be changed, it gives you many ways to bond as a family and pull together for a common cause. When you need each other’s’ support, comfort, and help, you become stronger together.

4. Your eating habits just might improve.

We have been a generally healthy family all along. However, when you HAVE to read every label of everything you put in your cart, you notice unhealthy ingredients and alarming sodium content that you never noticed before. After reading a label with very few recognizable or pronounceable ingredients, it becomes much harder to just throw it in your cart and move on. Our journey encouraged us to eat healthier foods with more natural ingredients and to find substitutes for our favorites that are better for our bodies.

5. You gain a more realistic view of mortality.

This may not seem like a positive, but the truth is that any one of us could die at any time. We've always known it, but we try not to think about it. Knowing the truth of the severe risks with food allergies forces you to deal with the fact that you cannot completely control your fate or the fates of those you love. You simply do your very best and trust God to help you not be controlled by fears and uncertainties.

6. You learn it’s ok to need other people.

Through this experience, I've learned it’s ok to show people some vulnerability. It’s alright to tell a friend you feel overwhelmed and need someone to listen. It’s ok to go to a support group meeting! It may seem like it’s better or that you are stronger if you don’t need anyone, but that thinking only cheats you and your family of a better you.

7. You can relate to a group of people who, although growing each year, is still the minority (which is good…we don’t want to be the majority!)

This community of people have all experienced similar struggles, fears, and triumphs that other people simply wouldn't understand. You can laugh together about things that wouldn't make sense to others (like compulsively wiping tables out in public, practicing with your expired Epi Pen on an orange, and the celebration in the middle of the grocery store when you find that for once the cheaper option IS the allergy safe option).

8. You notice others’ struggles more and have more compassion for them.

You are reminded that although your child is living with a serious condition, there are so many ways that your child is happy, intelligent, healthy, and wonderful. You are reminded to pray for those parents feeling alone and struggling through any health situation with their children- no matter how big or small it may seem.

9. Disney World becomes all the more magical.

Ever since I learned that Disney is a very allergy friendly place, I have dreamed of the day I might get to take my children there. I get excited to think of handing my kid a menu and saying, “Pick whatever you want. You can even have dessert!”

10. You become smarter!

You are now filled with all kinds of information that other people don’t know. You know more about labels, ingredient names, medical procedures, epinephrine laws in schools, and super big words like anaphylaxis. If you had to take a test and saw the question, “What are the top 8 food allergens and how must these items be treated on food labels in the US today?” you wouldn't even flinch!

There, you have it! Ten ways your life may not be ruined after all when you find out someone you love has a severe food allergy. Here’s to a glass half full…cheers!

EpiPen: I Thought You Were My Magic Wand

Getting the EpiPen

When the doctor sits you down and says the words “severe food allergy”, be ready to hear another important word. EpiPen. Now, there are different brands (Auvi-Q, Adrenaclick, generic versions, and so on) but they all are basically the same thing- epinephrine auto injectors. They give out a measured dose of epinephrine (adrenaline) to help blood circulate and open the airway that may start to close off in an episode of anaphylaxis (severe allergic reaction). The day our son’s allergies were confirmed, we had to go to the doctor for a prescription for an EpiPen and for training on using the device. I had envisioned EpiPen training to be something like CPR training with dummies to practice on and having to memorize facts and steps to repeat back to the doctor before becoming “certified.” I thought maybe there was a workbook to fill out proving you understood all important vocabulary related to allergies and anaphylaxis.  No. Not at all how it goes. The doctor hands us a training EpiPen, a DVD, and a prescription and sends us on our way.  I start thinking, “This DVD must just be really thorough and cover EVERYTHING I’d ever have a question about.” No. Not at all how it looks. The DVD only lasts about one minute and doesn't even show someone giving a child an EpiPen injection. Regardless, we go to the pharmacy and they hand it over, our magic wand. The thing I EXPECT to save my child’s life when someone makes a mistake.

The Fear of Needing It

A few months go by. I carry it around with us everywhere. I never leave it in the car (to be sure it is not ruined by extreme temperatures).  I practice with the training pen on myself many times to try and be comfortable with the thought of injecting my child. I need it near me all the time. I dream about our son eating peanuts and having a reaction. I dream about people trying to give us food with nuts in it. I once had a dream I found him sitting in a closet surrounded by Baby Ruth candy bars and having them all over his face. Now, is it likely that he will be left alone long enough to find a whole closet full of a candy bars we don’t even allow in our home? No. The dreams may not be real but the worry of exposure is very real to me.

A Magic Wand No More

It wasn't that long ago that a story hit the news about a young girl, 13 years old, who died of a severe allergic reaction to peanuts. The story made me cry nearly every day for a long time. I kept trying to find an answer to why she died. The story is so unsettling because her father is a doctor and was there to give her three EpiPens, and she still died. She didn't swallow the food because she tasted that it might have peanut butter in it, and she still died. Her family followed all the rules they had been taught, and she still died.  As soon as I read their story I thought, I don’t want to do this. I don’t want go through this if there is no magic wand or eraser for all mistakes.

Of course, I don’t really have a choice. I have to do my best and teach others how to care for my child. I have to keep toting around this injector, hoping it will work when I need it to help save his life. I pray I will never need to use it. I normally hate to “waste” things I buy, but with EpiPens, I sure hope I “waste” $250 again and again and again for the rest of his sweet life.

Mistakes Mean I’m Human…And That’s Not Good Enough

I recently went to register my child’s EpiPen online when I realized they would send me emails when they expire and need replaced. The shelf life of an EpiPen is about 12 months, so it can be easy to forget to replace them on time. Sounded great! Problem is…wait what!? Mine were already expired, and I only had them for 4 months! How did I let this happen? Why did the pharmacy give me pens with only 1/3 of their life left? I felt the weight of responsibility and hated that I missed something so very important. The pharmacy was helpful in fixing the problem and issued me new EpiPens at no charge. In the end I learned a valuable lesson about checking the expiration dates before leaving the pharmacy.  As I left with new EpiPens in hand, I sighed a bit of relief knowing we were prepared. The pharmacist looked me in the eyes and said, “I hope you never have to use this.” I felt as if I were a soldier returning to war, armed but not at all ready for the unknown.

I hope and pray this will not be what takes my child from this world. I pray for a miracle. I pray that a cure is found. I pray that someone will pinpoint the cause so the numbers stop rising. I pray for all peanuts to vanish from the earth (ok, not really, but it would be nice). I pray that I never make a mistake and that those who care for my kid will understand the importance of keeping these foods away from my child. I pray that I won’t live to see the day my child leaves this world and that that day will not happen until he is old and gray and has lived a long and wonderful life working hard for the Lord. But I can’t guarantee that any of these things will happen, and I hate that. I have no control. All I can do is pray and prepare and spread the word…the rest I put into God’s hands- hoping He will watch over my little one and keep him safe. I guess that’s what parents are supposed to do anyway, right? Trust God. Give their children to the Lord. Understand that we as humans are faulty and fallen and make mistakes. We make peace with our brokenness and lean on our Savior to carry us the rest of the way.

How Did You Know He Had Allergies?

On February 14, 2013 (yes, Valentine’s Day), my husband and I decided to give our son his first taste of peanut butter. At that time, he was 16 months old and we didn't feel there was a need to wait any longer to introduce this new food. Neither of us had any experience with food allergies prior to this day, yet we knew there was always a chance our child could have an allergic reaction to any new food.

We waited until a day when we were both home in the off chance that he had a reaction and I am so glad that we choose to do it that way. I introduced him to the new food by putting less than a teaspoon of peanut butter on a cracker. After he ate the cracker, I kept an eye on him but  didn't give him another bite. I was curious to see if he would like the taste and hoped he would enjoy it. One minute goes by…two minutes….we have a problem. He started developing a rash around his mouth, and little alarms go off in my mommy brain. We call the doctor and are told to give him Children’s Benadryl and watch him closely for 6 hours. If the rash didn't get better or if he started to show other symptoms, we needed to take him to the Emergency Room. So I worried, doubted myself, cried a lot, and got the medicine he needed. Then, we watched him like a hawk. He played on the floor with some toys like nothing was wrong, and the rash slowly faded over the next couple of hours. In the end, we did not need to rush him to the hospital, and we are so thankful that his first reaction did not affect his ability to breathe. Then, we waited two long months to see the doctor again, and she put in an order for blood work. We hated putting him through the pain and stress of testing but knew that we needed to know what we were dealing with here. We hoped very much that the test would end up being a “waste of time and money” and show that he was allergy free. Unfortunately, that did not happen. When I received a phone call from the doctor's office, I had no idea what they would say next. They shared the results with me over the phone and told me that he has a severe peanut allergy and a moderate allergy to wheat, egg whites, and dog dander. Immediately, we had to go to the doctor for a meeting, training, and epipen prescription. We had to change his diet right away (he never had a peanut after his first reaction but we had no clue until this phone call that we needed to remove wheat and eggs from his diet as well.) Life changed so quickly, and we still often feel like we are just trying to catch up.

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Welcome and Get Comfy...It's Gonna Be a Long Road

Welcome to the launch of my blog detailing my families experience with severe and multiple food allergies. I hope that this blog will give me an outlet for the many emotions, fears, and triumphs that come with this challenge while also providing others with a better understanding of allergies.

I have been encouraged and strengthened by the words of many others who have traveled this road before me and are still going strong in their passion to keep their families safe. Many lives touched by someone with allergies have become advocates and voices working to change laws and regulations to better care for those they love. The words of these people, strangers bound by a single commonality, compel me to share my story in hopes that others will find my journey comforting and inspiring to them.

I don't know why this has happened to MY child. I suppose we live in a broken world where bad things are just a part of life. All I know for sure is that I am determined...determined to become an expert in this area so I can help provide the very best care and support for my child. I choose to take this situation and bring out something great. I don't know for sure what the future holds, but I hope that my experiences and new knowledge will compel me to help others and make a positive impact on those around me.

Join me on this journey from the very start...from our very first days with food allergies. I know there is a chance my child could "outgrow" his allergies, but that chance is small. I will live with the mindset of a long road traveler. This is my life, and I will take charge of my circumstances. I will rise to the occasion!