Not Easy to Share

I don't really talk about the emotional aspect of having a child with a life threatening food allergy, but it's something that has been on my mind a lot lately (it's in the back of my mind always) so I'm going to go ahead and share.

In short: It sucks. It is still so hard to wrap my head around the fact that a microscopic bit of peanut protein could potentially kill my child. I mean, that is just bizarre. Food is not supposed to kill us. Basically every time she puts something in her mouth, there is a risk (albeit generally a small one depending on the source of the food) that she might die. I feel like I don't even have the time or energy to worry about the things that most parents worry about when I am consumed with making sure her food is safe.

And now, as she gets older, the responsibility has to shift onto her shoulders so that she will be prepared to handle it on her own. I'm so scared of the teenage years. I remember reading that food allergy deaths are most likely to occur between the ages of 13 and 20. That freaks me out. I really try to not let my mind go there too much, but sometimes I can't help it, especially with the sad news of a 13-year-old girl who died last month. My heart aches for her parents.

Sometimes I wonder how I will ever be able to let Mikaela go do stuff with friends. What if she starts to have a reaction and no one helps her? I mean, teenagers can be plain dumb. You hear the stories of kids binge drinking and passing out, then being left to die of alcohol poisoning because their friends ditched them or just didn't think to get help. What if Mikaela has a reaction so severe that there is no time for her to Epipen herself? What if she's alone and there's no one there to help her? Reading about a recent study that kids with food allergies are taunted and bullied doesn't help.

I get so angry when I read articles about how food allergies are often misdiagnosed or over-diagnosed, and then people are commenting with speculation that parents just make up their kids allergies. First of all, why the hell would someone make that up? And second of all, if a doctor tells you that your kid has an allergy, needs to strictly avoid that food and always carry an Epipen that might save their life in the instance of a reaction, are you going to test it out to see if the allergy is really that severe? I don't think so. Even if allergies are misdiagnosed, that is the problem of doctors, not parents, and definitely not the kids.

One thing that people don't realize is that even if an allergy is initially diagnosed as mild, you never know what kind of reaction you'll get each time. I am a perfect example of that. Several years ago I started noticing that my neck got itchy when I ate cucumbers. It wasn't horribly annoying so I continued to eat them occasionally, up until the reactions started worsening and I started avoiding them. This last spring I accidentally consumed some at a restaurant (they were diced into really tiny pieces in tabbouleh) and ended up having an anaphylactic reaction and now I have to carry an Epipen as well. Allergies are not very understood, and it's unknown why someone can have a mild reaction at one point and then full blown anaphylaxis at the next exposure to that food. It's not something one would want to mess around or experiment with just to see what happens.

I'm not looking for pity with this post. I'm just trying to give an inside view of what it's like, to help further understanding. Here are the main things that I would like people who don't have to deal with food allergies to know:

1. It's extremely stressful. Luckily Mikaela is in a very safe school at National Jewish Hospital right now, but the first school she went to I literally dropped her off every morning and wondered in the back of my head, "I wonder if today will be the day that I get that call." Not to mention the stress that she is under as the one with the allergy. She has to constantly be mindful of not touching her mouth, nose and eyes, washing hands often, checking to make sure that everything she eats is safe...and more.

2. Please try to put yourself/your child in our shoes. It's easy to say, "Just let that kid sit at a different table, just not have the treat being offered to everyone else, just be left out if it's not safe enough," etc, until it's your own kid.

3. I get that it's inconvenient. You may have to modify your kid's lunches and snacks if they go to a nut free school or have a nut free classroom. My goal is not to inconvenience you, though. It's simply to protect my child's life, and I truly, truly appreciate it when people go out of their way to help.

4. Please don't assume that we're making it up or it really isn't that severe. Mikaela has had contact, inhalation, and ingestion reactions to peanuts, including an anaphylactic reaction where I had to jam an Epipen into her thigh and call 911. It was terrifying. I kept my cool in the moment and did what I needed to do but afterward just shook and cried. She could have died. Quite frankly, any insinuation that I'm making a mountain out of a molehill is extremely offensive.