It has been two years this month since my daughter had what we now refer to as her “most violent anaphylaxis.” I wish I could say it was her only anaphylaxis, but as a family navigating our way through living with life-threatening food allergies, we have had several severe reactions. However, the one that haunts me the most happened in October 2014 when my daughter was 7 years old.
That night we left soccer practice and we stopped at a well known convenience store where she selected her on-the-go snack: a hotdog. When we returned home, she took about two bites and then she came to me as I was getting her younger brother bathed and said, “Mommy I have that feeling that I am scared,” which I would later learn is the feeling of impending doom that some people going into anaphylactic shock experience. She began to grab at her chest and it appeared that she was trying to rip her shirt off. I immediately reached for the Benadryl and began to pour it down her throat. Covered in Benadryl and my child’s tears, I told my husband I was taking her to the ER. I wasn’t sure at first what was really happening because this looked so much different than her anaphylaxis as a preschooler. This reaction did not bring forth any topical reactions. There was no rash, no hives, no redness and no swelling anywhere. To this day, we still are not sure what was in that hot dog.
Still, I threw her in the back of the car and drove her to the ER rather than call an ambulance because we lived so close to the hospital. During the drive she started to vomit so violently that her nose began gushing blood. As I pulled up to the children’s ER entrance, I slammed my SUV into park at the door. I can still hear the sounds of her gurgling and struggling as I lifted her out of the backseat. I can still see the terror in her eyes and the vision of her covered in vomit and blood. I can still recall the feeling of her tiny fingers clutching my clothes as she coughed while clinging to me with labored breathing. I can still recall the feeling of my own heartbeat and the panic I felt on the inside while I tried to keep it together for her on the outside.
She was given epinephrine in the ER and one of the first things she asked me was “Mommy, am I going to die?” For several months after she would ask that question before meals, before bed, during asthma attacks and sometimes just at random. Though we are always working through what happened, that fear is still with us both today. That fear is what keeps us alert and aware. That fear is what set us on our mission today to advocate. That fear is what sometimes makes me public enemy number one when I walk into Board of Education meetings, or 504 planning meetings to advocate for my child and others about the dangers these kids live with each day. That fear keeps me on my wobbly legs as I stand in front of groups of people and implore them to take a closer look at how we might all work together to create safer procedures to keep these kids alive. It’s not always easy, and other parents who are advocates for their children will likely agree that being an advocate puts you in undesirable circumstances at times. It can make you very unpopular. Taking a stand for your child comes with a cost.
Two years later, I can see the fear and anxiety that arrived that evening creep back for her even in non-food-related situations. I see the uncertainty when we walk into birthday parties and she scans the food selections to determine if there is anything she will be able to enjoy. I hear the anxious tone in her voice when she asks me to just tell people that she doesn’t like cake, rather than tell them she is allergic when we decline a piece, because now as a 9-year-old, she gets embarrassed. I feel the anxiety rush through her, as my hand grips her sweaty palm when we leave her allergist’s office after more testing and less answers about when and if she will outgrow her allergies. I sense the burden she carries when each year her final request to Santa on her Christmas list is: No More Allergies Please!
It has been said that everyone you meet is fighting a battle that you know nothing about, and though I do not know how this battle will shape her outcome in life, I’m proud of who she is today and who she is becoming living with life threatening allergies. She is now fully aware and understands that ingesting certain foods put her at risk for a fatal reaction. She is also aware that she is not alone in her struggles and two years later, she has agreed to allow me to share her story with more details. This is her story, and I am here to help tell it until she can find the right words to communicate what life is like for her and her peers living with this fatal but often silent threat. While this is not a journey that I ever imagined that I would be on, I am grateful for one very special tour guide who is showing me the way.