Like most food allergy parents, I often times find myself on edge. Filled with anxiety. Fearful. Scared. I long for the days I had my little love literally living in a bubble; the bubble of my womb, where she was well taken care of and most of all, SAFE. Safe is all I have ever wanted her to be since she was diagnosed with her first allergy, even though at that time we were blissfully unaware the full weight that burden was. Then we added another. And another. And then I really delved into what we were in for and as I watched the walls of my ignorance fall around me, I was immediately rebuilding new ones to keep my child safe. I say all the time (and it’s even the motto of my little blog here) that I strive not to keep her in a bubble. But if there is one thing that I can’t stress enough is that is the war. Not the battle, the war; the true war of living with food allergies is not living in a bubble. I never want her to believe that there is anything she can’t do because of her allergies. When kindergarten began, and we wanted to home school so badly because we were so petrified that I already had the paperwork in place that all I would have to do is make the call to the school and say we were doing it, we didn’t. We chose the war. I’d love to say that education would be our reason for homeschooling, but I knew that we would selfishly only be doing it to keep her safe; keeping her in a bubble. Being a sociable only child (though extremely shy), she craves being around other children, and that is not something I wanted to take from her because I was afraid some other parent would think their child’s right to a peanut butter sandwich is more important than my child’s right to live. Most days I feel like you could teach her that the sky is green and the grass is blue, and I wouldn’t think twice about it if I was assured that she was safe. This is my battle I fight every day. I know that her education should be my top priority, but it’s just not. It is most definitely a close second, but still second.
I fear that her friends won’t be empathetic, or worse; that she may be bullied because of this. There was one incident in preschool where a little boy she was playing with on the playground told her that there were peanuts behind her on the slide. Her teacher quickly jumped into action and dissolved the situation ensuring Breezy that there were no peanuts on the playground anywhere, and that the little boy was made to apologize and informed him that allergies are absolutely no joking matter. But Breezy didn’t go near that slide for days, until I went with her to her playground to look to make sure. It took that little boy 5 seconds to put the fear of God into my child. This happened in preschool. Preschool. What happens when she gets a little older? It worries me. It concerns me how kids can be so cruel to judge someone on something that they can not help. It’s the equivalent of judging someone because their eyes are blue. They can’t change that. It’s the way they were born. Don’t get me wrong. A lot of kids are very open minded and empathetic with her situation. I’ve heard several of her friends tell her that they haven’t ate peanuts all day and that they washed their hands before they play with her. It melts my heart to hear those things. But they are still tiny and sweet and innocent. What happens when they aren’t anymore?
Most of all, I fear the epinephrine. Crazy, I know. Why Would I fear our security blanket, our insurance policy, our life saver? We have been so completely lucky to have never have had to use it (knock on wood) in 4 years. My husband and I regularly retrain ourselves often, we are vigilant about every single thing that she eats or is even brought into our house, and we make sure we all keep our hands clean. If she has a bubble, it is most definitely her home. I fear the day will come that we have to use the epi-pens. I am as physically and mentally prepared for that day as anyone could ever be. Emotionally is something I will never be. To hold her down, to inflict that pain on her, to hold her hand in that ambulance ride to the hospital, and to pray to God that everything went right and she makes it through smoothly with no complications, and to keep my emotions in check in front of her is something I’ll never be emotionally prepared for. I fear what would happen after it’s all said and done.
I fear that she may quit eating. I’ve heard of this happening before to several other food allergic kids after experiencing anaphylaxis, even to the point of severe malnutrition. I fear she’ll have episodes like she did after this close call, where she will ask me repeatedly before each bite if she can have it, or if she can even swallow it. I don’t want her to feel that anxiety. I want her to feel safe.
If you follow me enough, you know that I take blogging breaks way more often than I would like to. This almost always has to do with the sometimes overwhelming stress that food allergies causes. It is enough to have to live it every day. It’s another thing to advocate the way that blogging does. It’s all consuming, and sometimes a person just needs a break. It’s just like a lot of the leaders of the No Nuts Moms Group will tell you; you need to step back sometimes. I sometimes am so mentally and emotionally exhausted from something we just went through, that I can’t find the strength to share it, let alone try to find the strength to encourage others. If you are in any of the food allergy forums, it can mentally and emotionally exhaust a person jut to read all about other people’s trials and tribulations that come with this way of life. But the important thing to remember that almost always gets back on my horse and riding again is that is how we improve. That is how we learn. That is how we encourage. We have to SHARE, because that is what keeps us going as parents of these amazing kids. I’ve said it before, and I’ll say it over and over again, but the No Nuts Moms Group was my light bulb moment. Because of them and what they have taught me (and continue to teach me) by sharing their stories from their journeys , I find my strength. And it reminds me why I started this blog in the first place. It was so educate and advocate, and my job will not be done until there is a cure.