Ever paid $984 for a piece of candy?

I have.

My daughter is allergic to milk, tree nuts, peanuts, fish and shellfish. She just recently outgrew her allergy to eggs. My daughter’s food allergies have not been the topic of one of my blog posts yet. This is really a bit ironic, because managing her dietary needs has been and still is a huge part of our lives.

I think I haven’t written about it because I don’t want her to feel that it’s a burden on me and in turn blame herself. Or maybe I am in denial? Maybe it is too scary to face the “what-ifs”? Maybe thinking about the frustration, anger, sadness, and forever hope she feels breaks my heart?

At an Easter egg hunt a couple of years back, she mistakenly ate a small jellybean shaped whopper candy…yes, just one itsy bitsy piece. Despite our preparation beforehand (discussing what she could eat and bringing safe chocolate substitutes), the excitement of the day was distracting. Whoppers contain milk, and she quickly went into anaphylactic shock. To save her life, I had to jab an epi-pen (jr.) in her thigh, call 911, and spend the rest of the day in the ER.

I blamed myself. How could I let this happen? My poor baby! Is she scared? Hurt? Sad? Thinking I didn’t protect her? No. My amazingly strong daughter was positive, smiling, and cooperating with the paramedics. She even complimented me on the way I “tackled” her and administered the epinephrine. She was only 5-years-old at the time.

We hadn’t met our insurance deductible. The ambulance is not covered by insurance. So, that little whopper candy cost roughly $984.

Obviously, the money doesn’t matter. I would give anything to eliminate this problem in her life. It’s unfair. She doesn’t deserve this. It kills me when she suffers because of her food allergies. I can’t fix it or make it go away. I can only help her understand the condition and how to enjoy life with food allergies. I must also maintain and model endless hope.

Things will get better and these allergies can improve over time. My kid is simply amazing. I know she is stronger because of her food allergies and everything that comes with having them.

I try to make life as easy and “normal” for her as possible. When I found a cheese substitute* that actually melted, I almost threw a party. Seriously! She could finally have pizza. We did a happy dance when we found safe girl scout cookies* and ice cream sandwiches*. I make a lot from scratch, and add a lot of love~

Birthday parties are difficult. She gets invited, then thinks about how she can’t eat the cake and ice cream that will be there. I always bring a safe but obviously different treat for her. She often feels left out. Kids and their parents ask her, “Why aren’t you eating the ice cream? What kid doesn’t like ice cream?!” I remind them of my daughter’s severe allergies in a polite and positive manner. I can sense my child’s ears perking up, listening for frustration or fear in my voice.

Sending her to school almost caused me a panic attack. I pack her lunch everyday. I correspond with her teachers often about food being involved in lessons and brought in on holidays and birthdays. Her teacher keeps a safe snack for her just in case. Her epi-pen is in the office with all of her emergency contact numbers-911 being first on the list.

Kids have bullied and teased her. My daughter has felt isolated, frustrated, and angry at times. These situations send my motherly instincts through the roof! I want to protect her from everything from milk to classmates to M&M commercials-and mostly…the lack of empathy from others.

It can be overwhelming. I have found that most people just don’t “get” it. Adults sometimes act like I am making this stuff up. Kids have curiosity about someone who is different and often voice it. Someone who can’t do some of the things that they take for granted, like drinking a carton of milk at lunch or eating goldfish crackers. I am part of a wonderful online support group* that has helped tremendously.

My daughter has developed impressive adaptation and communication skills because of her food allergies. She has a strong personality. I am so proud of her. She holds my heart in her hands. Her pain is my pain. Her happiness is my happiness. I want her to know that I will always be her rock.

Now, as I write about her health issues, I am learning things about me. I know that I will never stop trying to bring awareness to the complex issue of food allergies. I know that I will be an advocate for her and all families struggling with this. I know that I will be strong too.

*The best, non-dairy melting cheese substitute and more: www.daiyafoods.com

*Thanks-A-Lots and Lemonades girl scout cookies only contain wheat and soy (yay!).

*All kinds of allergy-free, yummy products: www.tofutti.com

*Very supportive group of FA parents: www.ncfaces.org