By Christine Negendank-Minetola

Our 12 year-old daughter, Emilia, has a severe, life-threatening food allergy. She is not alone. As many as 15 million people in the United States have food allergies. Food allergies among children have increased approximately 50% between 1997 and 2011.

Every 6 minutes in the U.S. someone suffers an anaphylactic reaction to food. Anaphylaxis is not the same as intolerance to food. Anaphylaxis occurs when a flood of chemicals released by the immune system causes a person to go into shock with a sudden decrease in blood pressure and a narrowing of the airways that block normal breathing.

Anaphylaxis is often a fatal reaction unless treated rapidly with injectable medication and life support. There is no cure for food allergies and the majority of children with nut allergies do not grow out of them. Strict avoidance of food allergens and early recognition and management of food reactions are important measures to prevent serious health consequences and death.

What does this mean for us? As parents we have to monitor every morsel of food that enters into our daughter’s mouth, what she touches, and what she smells. She cannot be in any environment where peanuts are being opened as peanut allergens can be airborne. She cannot eat any food with nuts, foods made in a factory with nuts, or foods that have any possible cross contamination with nut products.

As parents we have to monitor every morsel of food that enters into our daughter’s mouth, what she touches, and what she smells.

She cannot eat friend’s birthday cake or go to parties and enjoy the treats. She cannot know the pleasure of going to an ice cream shop on a hot summer’s day, buying a bagel or muffin from a bakery on the way to school, or eating chocolate from the fancy chocolate shops downtown.

She cannot go to many restaurants or even enjoy holidays because of the constant risk to her health.

Children with nut allergies are excluded from many events and places. It is important for children with nut allergies to feel safe and included especially in their faith community. St. Luke has made the decision to go nut-free.

St. Luke has made the decision to go nut-free.

This decision was made to prevent the exclusion of children like our daughter from the one place they should not be fearful to go. This decision now allows our child to engage with the youth at St. Luke fully.

This has been a great blessing for her and for us. She smiles every time she sees a “no nuts” sign because she feels loved and included by God’s family.

As parents we have been told we are “neurotic” and want our child to have special privileges. In reality, we just want our daughter to survive another day.

When I say goodbye to her each day at school I make sure to remind her I love her. I daily have in the back of my mind that she may have a reaction and I may not be able to tell her I love her again.

I daily have in the back of my mind that she may have a reaction and I may not be able to tell her I love her again.

This may seem dramatic—but it is not. It is not easy, despite our hypervigilance, to keep her safe. We know many parents who have lost their children to food allergies and it is heart-breaking and terrifying. We have seen our child go from happy and active to rapidly decompensating and starting to pass out from lack of oxygen.

We have seen her experience anaphylaxis four times. Every moment is terrifying as we never know if the epi-pen is going to work fast enough to save her. The wait for the ambulance to arrive feels like an eternity even though they have always come in a matter of minutes.

The last anaphylactic reaction she had was to pizza we bought at a local pizza shop that we have been going to for three years without problems. This reminded us once again that we can never let our guard down and she is never truly safe.

We have seen her experience anaphylaxis four times.

Adding to the complexity is that there is no standard for labeling packaged foods in the U.S. so contaminants could be present but not listed on food labels. Even foods that state they are “nut free” are not required to test their ingredients so we can never be completely assured that what we feed her is safe.

So where does our faith fit into all of this? I have always believed that our children’s lives are fully in the hands of God’s good and gracious plan. However, it is one thing to say that we trust the Lord implicitly with our children’s lives and another to truly live it.

Having a child with a food allergy presses us to grow our faith to a much deeper level. I have to completely trust that God is in control and will make good come from every negative situation. This is not easy to do and requires constant prayer and immersion in God’s Word.

Prior to living in the type of fear we do now, I feel my prayers were superficial. I made generic requests while keeping my composure at all times.  Now my prayers are much deeper and more real.

When I pray I praise God, I argue with Him, I get angry with Him, I cry, I ask for forgiveness for my lack of faith and trust, and always end my prayers with, “God, help my faith to grow deeper so I can trust you completely with our lives and the lives of our children.”

The relationship I now have with God would not have happened without this issue in our lives. We have also seen God’s work through the outpouring of love and support from our friends and faith community who have taken the time to learn about what this allergy means for our lives and have gone above and beyond in being advocates for our daughter.

Our friends will keep all food labels for us to check when we are coming to their house, sanitize their kitchens to avoid any cross-contamination, and help us educate those who get angry when we ask for a nut-free environment. There are very few places we can go to where Emilia feels 100% safe and the majority of these places are the homes of friends from our church family.

Through these relationships God has shown His love for us in ways we have never before experienced and have also helped us to understand the importance of developing and maintaining our relationships with others in the church.

We hope and pray that God will at some time feel that we have learned what we need to from Emilia’s allergy and take it from her. However, recognizing that through every hardship comes immense blessings, we also submit to His plan for her life and for our lives and trust that He always will lead us on the path to stronger faith in Him.