by Jon Gonzalez and Joyce Ahrens
Food Allergy Foundation
A mother's story.
“The test results are positive.” Never have the same five words caused me more joy or sadness with their utterance. When I said them in February of 2000, my face beamed with anticipation as I told my husband with tears in my eyes that we were expecting our second child in the fall. That September we were blessed three weeks early as tiny, beautiful Emma Elizabeth joined our family. We chose the name Emma because it meant “embracing everything.” As I held my newborn, I envisioned a world free of obstacles for her as she explored and experienced life to its fullest.
Emma’s babyhood was not one without mysteries. She was jaundiced at birth and they were hesitant to allow us to take her home from the hospital. After we got home, she had daily heel pricks, weigh-ins, and a bili-light vest to wear continuously for a week. For the next month, Emma nursed every 1½ hours around the clock (can we say VERY tired Mommy?) as her body recovered from the jaundice. At one month old Emma developed an ear infection and required antibiotics. At two months she began rhythmically rubbing her face on our shoulders when we held her. She literally rubbed the skin off of her own chin, leaving bloody abrasions in its place. This continues for months. Our pediatrician did not have answers. I was breast feeding Emma as her only source of nutrition and asked if it was possible that something I was ingesting could be irritating her. The doctor told me that it was chapped skin from slobbering and instructed me to smear Crisco shortening on the baby’s face, just like the pediatrician’s grandmother had done years before. We quickly switched pediatricians!
The Internet was just taking shape back then, so there was little information available for parents concerned with food allergies. I found some information suggesting that dairy may be a culprit, as the milk proteins can travel through breast milk, so I removed all dairy from my diet. Soon Emma’s face began to clear and she seemed much less irritated. (Less irritated, that is, until I ate soy cheese, but we’ll save that story for another day!) The allergist instructed us not to give Emma any nuts until age two because of the observed milk sensitivity, telling us that children with food sensitivity as an infant have a higher risk for nut allergies.
Two and a half years later those same five words brought me to tears again, but not tears of joy. One sunny November morning after I had taken big sister Rebecca to kindergarten and our busy toddler to her mother’s morning out program, I answered the phone to hear the voice of the nurse from our allergist’s office. My heart sank as her news had medically confirmed what I had witnessed a few weeks earlier. I had given Emma a piece of bread with a thin layer of peanut butter spread on it. Emma was two and I wanted to see if she was able to eat peanuts. I’m not sure what I thought would happen next, since her dairy “allergy” only caused respiratory congestion, skin irritation, and ear infections. Emma, who we had nicknamed “Action Ahrens” had quickly grown into her name. She was full of energy, exploring the world at her pace- a fast one! She took the bread from me and immediately stuck the peanut butter side to her face! As I peeled the bread back, I gasped as I saw that there were instant welts on her cheeks, mouth, and nose. I quickly washed her face, gave her antihistamines, and called the doctor’s office. We knew so little about allergies then, and I am thankful each day that Emma did not eat that peanut butter. Sometimes what you don’t know CAN hurt you. As I hung up the phone after hearing the results of the RAST blood test, I sobbed knowing that each day ahead would hold danger for my child. How would I protect her? How would she lead a normal life? What if she had a reaction? Would I be able to save her?
In the nine years since her diagnosis, I would love to be able to tell you that the answers to those questions have gotten easier to contemplate. Each day I love my precious child more, and each day the answers to those questions change as she changes and grows. It’s a journey that we are on together every day, helping Emma to navigate those obstacles that I had hoped she would never encounter.
Jon Gonzalez is CEO of the Food Allergy Foundation (FAF), a national 501(c)(3) nonprofit organization dedicated to helping families, individuals and children with food allergies. We are the "louder voice" in the food allergy community focusing our efforts on funding food allergy support groups, education, awareness, advocacy and research across the country and around the globe. We invite you to help us help others. Visit us at www.foodallergyfoundation.org. Jon can be reached at email@example.com.
Joyce Ahrens is a writer, pediatric occupational therapist, and advocate for individuals with special needs, but her most important job is being Mom to her two daughters, Rebecca and Emma. She is currently working on a childrens’ book about food allergies that she hopes to publish in 2012. Joyce welcomes your comments at firstname.lastname@example.org.