Our peanut allergy research journey. August 22, 2018.

A year ago I wrote about one bad day in the life of a food allergy parent. That appointment was never planned. It was an afterthought at his annual checkup to start allergy shots for his hay fever. Before we could begin, he had to have an updated skin test. The reaction he had that day flagged us to be considered for a clinical trial and the rest is the history we are writing today…



Today my son was punished for this….

by me. 

He’s had peanut and environmental allergies since he was born. Following today’s skin test (big yucky reaction to grasses), we can finally begin allergy shots. Goodbye hay fever, ear infections, the line item on our budget for tissues!!! 🙌 No shots for peanut allergy, though. Those don’t exist (yet 🙏🏻🙏🏻🙏🏻). That whelp at the bottom was there for comparison – and it was off the charts  😩.

So while we were sitting in the exam room I looked around and asked him, “Where are your EpiPens?”

We looked… In his book bag, the waiting room, the car, the floors… The EpiPens were an hour and a half away on my kitchen counter. 

Last night I said, “Get your things ready to take with us to Children’s tomorrow. Don’t forget your EpiPens.” (ok)

This morning I said, “Do you have everything? Do you have your EpiPens?” (Yes)

In the car, one more time, “Got everything? EpiPens?” (Yes)

Did I check? Make him show them to me before I put the car in reverse? Nope. Has that been my habit and my responsibility since he was a baby? YES!!! Yes, yes, and yes again. But this is the year he has taken on the responsibility. We worked on it, we transitioned, we quietly let him forget but didn’t leave until he remembered himself, and we steadily took steps back as he moved forward in self-management. 

When I realized we didn’t have his EpiPens with us today, everything changed. I looked around.. we’re in a hospital. Okay. We’re safe. But we have to get home and it takes ninety minutes. Go straight home. No traditional “post-appointment lunch date”. No stopping anywhere for anything. My mind was racing, “Who or what has been in my car that may have had peanut?… Just stop. He made it here safe. It’s fine. We’ll go straight home.”  He didn’t see my racing thoughts. He saw my steely gaze, my clenched jaw, my white knuckles. I tried to hold it back. I did try. I lectured and scolded him as I would any other time. I didn’t voice my anger, yell or scream, or degrade. It’s almost autopilot anymore… forgot your pencil, where’s your water bottle, go get your book, why didn’t you answer your phone…. he’s thirteen and he forgets something every single day. But forgetting EpiPens is never ok. Never. 

As we left Children’s Hospital, I was trying to take deep breaths but the air in the car was highly charged with my fury, and he felt it. Everyone in the parking lot felt it. He was somber. I was terrified because we weren’t protected. He was terrified because of the same thing AND of my wrath. I found a calm voice and made it trump the screams that were surfacing and I said, “No more TV. Not before school. Not after school. If we have to leave the house for anything at all, no matter how early or late, no TV. You can watch for an hour before bed. My reasoning – when I’m telling you to get in the car, we’re running late, time to go… that TV is still on. It distracts you and results in you overlooking what you need to take with you. And today it was much more serious than a water bottle or library book.”  

The relief and enthusiasm in his voice when he said okay was pitiful. 

So he was punished. 

For leaving something behind. 

Something he needs because he’s allergic to peanuts. 

Deathly allergic. 

Logic and a mother’s guilt would conclude that I just punished my son for a life threatening condition that he was born with; something that has never been a choice or a consequence of a choice. That’s when I had to turn my face away and let the tears burn down my cheeks. 

Thirteen. He’s thirteen years old. He’s just beginning his journey of independence. He’s on the cusp of “the best years of his life”. I’m tired. I am so tired. For thirteen years I have been hyper alert to our surroundings and our interventions. It never leaves my mind for a second. I tell myself all the time that people have much, much greater struggles; that we can control his environment when others have a very bleak and imminent darkness of distress, disease, and mortality. I see the articles, every one of them, about another food allergy related death. Yes, most of the time the “things could be much worse” mantra snaps me out of a funk like this. But sometimes it doesn’t. Sometimes I reach my breaking point and I want to have that moment when he was 7 months old and had his first reaction to peanuts back, and I want a dadgum do-over. I want to relive that moment without the allergic reaction. I want it to never have happened and to never have railroaded our life. 

But it did. And it does. And it will continue to. And I will continue. 

I will continue to protect him. 

I will continue to encourage him. 

I will continue to guide him from being parented to being independent. 

And I will spend way, way, way more moments enjoying my children and making memories with them than fearing and failing. 

Heck, sounds like the same challenge every mother is charged with. Maybe I’m not so special after all. 

I’m so sorry, buddy, that you are allergic to peanuts. I would take it from you in a heartbeat. I would pay any cost to take it from you. But I wouldn’t rob you of being part of God’s glorious story of you. I can pray. I can trust my God who gave me the incredible gift of you. I want Him to use our struggle to reach others with His love, and compassion, and eternal hope. I want Him to be glorified. I want Him to be lifted high for all to see His grace and mercy through you, my son. However this falls into place, however it is part of His plan to love others, we embrace it. 

It’s not about TV, or EpiPens, or scoldings, or exhaustion…. it’s about faith.  

Learn your lessons. Live your life. Love and honor and worship your Heavenly Father. 

In our humanity, we slip into a sinkhole of self pity. 

And we are forgiven. 

In our faith, we plunge into the power of His presence. 

And we are victorious. 

“The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” Deuteronomy 31:8

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