After a few days in the NICU, and many consultations, the doctors and I had a pretty good plan. I would avoid eating dairy, we would use epi if she showed signs of anaphylaxis, and life would go on. The allergist said anaphylaxis is serious, but manageable. Her parting words were, “give her epi and she will be OK”. So I moved on with life, and still had very little fear.
Fast-forward 6 weeks and I’m sitting in the allergists office learning that my tiny baby is also allergic to eggs and peanuts. At this point I realize I’m in over my head. I don’t know what to eat. I need help!
I went online and started researching food allergies. This is where my fears were brought to life. I was bombarded by stories of death and how children with food allergies get left out. How their lives are lived unfulfilled. On Facebook boards, statements like “Allergies can change at any time, so past experience doesn't mean your kid won't die next time” and “all food allergies are life threatening” were daily banter.
On some sites, there is a “group think” phenomenon that takes over. Advice is given to keep your child away from the playgrounds, and that completely banning food is the only way to keep you child safe. If another parent disagreed, inevitably a handful of people will begin to bully, and statements like, “what if you do something wrong and your child dies” or, “You’re obviously not worried about your child’s life being in danger” would come into play. I had seen my baby in anaphylaxis and all I wanted was to keep her safe, everyone else be damned.
When it was time to start daycare, I had to find a way to make the staff understand that my child’s life was in their hands. I didn’t walk in prepared to educate or advocate. I went for the shock value. I didn’t say she had allergies, I said she had life threatening food allergies. I told them, in graphic detail, all the events of each anaphylactic reaction she had ever had. I did not tell them about the weekly small reactions that happened. I didn’t tell them that I understood how difficult it was going to be to avoid contact reactions to dairy in a room full of baby bottles. I didn’t even discuss that much pertinent information with them. I basically said, she only eats the food I bring and if you feed her the wrong thing you have 5 minutes to give her the epi or you’re going to kill her. It may seem like using scare tactics is the way to go, but each time I preached it, the monster in my mind grew a little more. Fear
A year and a half, and lots of anxiety later, Christmas comes along. My 4 year old nephew tried feed my daughter a cookie. When I looked down, he was holding the cookie against her closed mouth. I reacted instantly. I snapped that cookie out of his hand, threw it across the room and began to verbally assault my family. I didn’t see a 4 year old trying to share. I saw someone else’s child trying to poison my child. I saw my mother as the woman who put more value in a cookie than my child’s life, and my sister in law as an enemy. I saw “them” vs. “us”. My family just kind of settled into a stunned silence as I went nuclear. You see, I had taken the visceral hatred I had for the food and extended it to the people who were eating that food as well. The people I loved!
They had no idea what the big deal was. They were not educated on food allergies. I simply demanded that no allergens be served, or we weren’t coming (even though I wouldn’t allow my daughter to eat “their” food) I failed my family by not educating them, and my stubbornness about keeping all allergens away at all times had actually backfired and put my daughter in danger. If I had educated my family on allergen controls and learned, myself, how to keep my child safe in an allergenic environment instead of demanding a food ban in my mother’s home, no one would have been sneaking cookies. Let me say this one more time.
I yelled at 4 year old and took his cookie away. He wasn’t even my kid!
I went home and called the only other FA mom I knew, looking for support. She’d been at it for years. Her statement was simple, but it had a profound effect on me. “No one wants to be the person who hurts your child.” That’s when I realized there was a major problem, and it was me. My mind had focused so much on what “we” were losing, that I had totally lost touch with reality. I was mourning the healthy child I didn’t get and at the same time fighting as fiercely as I could to keep the baby I had safe. There was so much sadness, guilt, and anger in me. I had to fix myself before I could fix my family.
What I failed to realize in the beginning is that it’s really difficult to live a fulfilling life with the boogeyman in my head. Does it keep our children safer to imagine all the catastrophic events that could happen? No, I believe it has the opposite effect. You need to have a clear head when treating an allergic reaction, and having a constant fear of “what if” is going to hinder your ability to treat your child effectively. For some reason, even today, I will find my mind wandering down that path. The trick is to recognize when your mind is drifting and redirect it. I remind myself that she knows how to avoid her allergens. She knows how to use her epi pen and call 911. Every adult she is ever with is epi trained; basically, anything to redirect my train of thought.
We’re surrounded by negative stories. Every death that happens is plastered all over social media. Every school that violates a 504 or simply makes a mistake is demonized. The chat boards are flooded with pictures of young children, mid reaction. All these things do is propagate fear. Fear that we can't trust others and fear that our children will die. The reality is we have more medical technology at our disposal now than we ever did before, yet we live with more fear and anxiety than past generations did.
We have to change our way of thinking, if not for ourselves, than for our children. In 2009 a study was done researching the stress levels of food allergic children. The study did identify a subset of children who had increased distress scores. The children with mothers who had high levels of anxiety, also had high levels of anxiety as well as a more negative attitude about food allergies in general.
I do not want my daughter to inherit my fears. I will not psychologically handicap my child. She already has enough to deal with. There are tons of situations that still make me nervous. I would love to ban her from any event that involves food, but that’s not going to help her in the long run. She is going to have food allergies the rest of her life. I don’t want her to live a life of fear. She needs to learn how to live a happy, productive life in spite of her limitations. She has to learn how to cope with the emotional aspect of food allergies. While pushing it all away as long as I can feels like the right thing, I have to ask myself, what is best for her in the long run? Will demanding bans or instilling a fear of her allergens help her learn to navigate her environment? No. Is there a possibility it could influence her toward becoming an entitled and demanding adult? That is a concern.
I would rather she live her life fully, despite her allergies. I want her to realize that not everyone knows about food allergies. People don’t leave her out to be mean, but simply due to a lack of understanding. Even if they do leave her out on purpose, I want her to gain strength from the experience. Everyone is bullied sometimes, everyone feels different, and sometimes people get left out. I would love to protect her from those things, but they happen to everyone, regardless of allergies. I want her to realize that everyone deals with something. I want her to be empathetic. Mostly, I want her to really live.