The Hardest Thing ...
by Joyce Ahrens
This afternoon I asked my 5th grade daughter what the hardest thing is about having a food allergy. We don’t usually talk about her allergy using “those” kinds of negative terms-hardest, worst, or most terrible- choosing instead to count our blessings, maintain a positive attitude, and use our resources as best we can. We prefer to use terms like “challenging” or “frustrating,” but today, as I prepared to write this column, I wanted to hear honestly from Emma, in her life with a food allergy as she lives it, what she feels is the hardest thing.
Her first response surprised me a little, as I would have guessed it to be third or fourth. (There’s that Mommy-thinking-that-she-knows-her-child-best thing!) Her second, third, fourth, fifth, and sixth responses (and perhaps the fact that there were six responses that flowed so freely when I asked her for only one) made me just plain sad. I wasn’t sad because of the tone of Emma’s responses, but sad because I realized today that I have never really asked Emma before this moment how she really does feel about her allergy. It has been something that has existed in our lives since she was a tossley little two year old. It is this thing that we manage and learn about, maneuver, and plan around. We advocate, promote, educate, support, and just keep going. But what do we feel? More importantly, what do our children who are living with these allergies every day feel as they go through their daily walk, facing the prospect of their mortality on a daily basis, snack by snack, meal by meal.
Last week at school, a boy in Emma’s class asked her why she can’t eat nuts. The kids in her class have brought nut-free snacks for months, thanks to the kindness of their parents, without much discussion on the subject. She told him without hesitation that if she ate them she could die. His immediate response was “You wouldn’t die!” Emma actually laughed a bit at this retort from someone whose purpose of asking was originally to gain information. Apparently he knew the answer before he asked her? She then described an anaphylactic reaction to the boy, watching as his eyes grew larger the longer she spoke. We talked about it that evening and reflected on how frequently we experience disbelief from those around us.
So why have I not ever asked my child how she truly feels about her allergy? Of course we’ve talked about incidents when they’ve happened - how frustrating it is when Emma has come home heartbroken because a friend chose peanut products over her presence at a birthday party, or how annoyed she was when kids on the playground surrounded her with their lunch boxes saying they were going to put peanut butter on her. But my role in those situations is comforter and cheerleader. Preserve and build self esteem. Help her see the bright side, right? Trust me, I have gotten very creative with this one, because sometimes there just isn’t an easy one to find!
Maybe I’ve never officially asked Emma about how she feels about her allergy because I never want to create a habit of going through life feeling sorry for herself. I come from a proud, blue-collar small town in central Pennsylvania. In our little town there was no option for self pity. It is what it is. Deal with it. Move on. Someone else always has it worse than you. Done.
But maybe the real reason I haven’t asked Emma about how she feels about her allergy is because I’m afraid that she’ll ask me the same question. “Mom, how do you feel about my allergy?” How would it make anyone feel to know that one little mistake could cost us her life? Her life. I never want my feelings to scare her or make her worry more about what she already has to think too much about.
We continued our conversation about her feelings and concluded that having an allergy stinks. There’s no way around that. But we also concluded that we feel thankful for epi-pens, allergists, dietary options, and people who care so much in our daily lives. We are thankful for research, progress, and the possibilities of the future. And so we move forward together choosing to count our blessings, maintain a positive attitude, and use our resources as best we can.
The Test Results Are Positive
by Joyce Ahrens
“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 1 ½ 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 antihistimines, 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.
Dedicated to Saving Lives and Supporting Others
