On November 26, 2014, a young man named Chandler Swink died after suffering a severe allergic reaction to peanuts. I wrote this article that day. I waited to post this because I didn’t feel right discussing my fears as if they were as important as this man’s death. They aren’t; my fears are nothing in comparison to what he, his family and friends have gone through, and what so many other families have gone through when a loved one is lost due to a food allergy.
To the family of Chandler Swink: My heart is broken over your loss. I have thought of and prayed for you often since I read your story and will continue to do so. I am praying for your comfort, for you to find peace, and that God and your loved ones will carry you through the difficult days and years to come. I pray that the memories of your son will be vivid and will bring you joy and solace through your pain. I thank you for speaking out about your family’s experience with food allergies and for advocating for other children.
From November 26, 2014.
Today was just a normal day. I woke up and spent time reading my bible, praying and journaling in the warmth of my bed. I felt great.
A quick shower, and the kids were awake. I spent some time snuggling with my 4-year-old, talking about what we to do today, and we prayed to start our day. By now, we could hear my daughter squealing and playing in her room. We cracked the door open and peaked in to find her jumping up and down in her crib, giggling as we entered. As always, she was ready to go and full of joy.
Thanksgiving on the way, these sweeties to spend the day with…I went downstairs with smiling kids, and an even bigger smile oozing off my face. Today would be a good day.
I served breakfast and sat down with a piping hot cup of coffee to check my email before heading out to run errands. Nothing important in my email and the kids were still eating so I opened Facebook and started to scroll down the news feed.
The second post stopped me in my tracks. I spilled that hot coffee on my hand. It burned, but my reaction to the coffee was nothing compared to what I read.
A college student in a coma from an allergic reaction for a week. A grim outlook. It didn’t even sound like he’d eaten a nut. A contact reaction. Later that day, I’d read of his death.
I can’t adequately describe the tightness in my chest and the intensity and loudness of my heart throbbing wildly I looked across the room our son.
Innocently eating breakfast, giggling with his sister. All smiles and silliness with a mouth full of cereal.
My eyes welled up with tears instantly, and I walked out of the room. I tried to compose myself. This news was much too heavy for a 4-year-old to bear and he doesn’t need to see me cry. When he is older, perhaps I will let him see my tears over these stories, but for now, I spare him.
It saddens me that this is not the first or last time that I will read news like this. To say my world is turned upside down is an understatement. It releases fears that I usually give to God and move on from. But today…
The fear rises…
Welling up with a ferocity and power I can’t control. I suddenly find myself paralyzed by fear and subject to my own terrifying daydreams of my worst fears. My mind wanders to places it shouldn’t be allowed to go. Thinking horrible and terrifying things, down a rabbit hole I go…The story of a child being harmed or dying is enough to make ANY parent find heart stopping dread in the possibility of what could happen to their own child.
News of severe and fatal allergic reactions occurs too often and reduces me to tears and heart seizing fears almost every time. It wasn’t even a month ago when I was reading about another child who had a fatal reaction on Halloween. I don’t think they ever learned what caused the reaction to occur. It shook me then, and now, again, it shakes me today. But deeper. Building on the knowledge that this isn’t a one-time news story. These deaths are too frequent. Too real. They make me realize our own frailty, and to fear this outcome for my son who has a peanut and tree nut allergy.
These death are accidents that happen to vigilant and responsible people. It is not carelessness. They are doing everything they can to protect themselves and their loved ones from allergic reactions. Then suddenly, an unforeseen, unplanned interaction with an allergen, and suddenly what should have been a normal day becomes deadly.
On what started as a normal day for me, I suddenly find myself trembling, my white knuckled fist clutching a tissue as I struggle to catch my breath. I desperately plead with God to not only save this young man and comfort his loved ones, but also to protect my own child. And to help me simply continue on with the day and enjoy my children who are here with me now, safe and sound.
I’m sure this child and his loved ones started that fateful day just as simply as I began my own. Unassuming. Hopeful. Joyful. Unaware that it would be the last day he would ever wake. As parents of children with food allergies, we always have that nagging voice that reminds us to keep them safe. But most of the time, I don’t wake thinking that today will be the day that a reaction occurs; that this could be it. We don’t think about how even if we do everything right that a reaction could occur and that an Epi-Pen may not save them. We can’t thrive if we spend all of our moments like that. But it could be a reality we may face, any day.
Too often, I find myself soothing my fears with the Epi-Pen. Not good. News like this reminds me that an Epi-Pen isn’t a cure. It’s not a security blanket. It surely gives them a fighting chance, but for a severe reaction, sometimes it is no more than a Hail-Mary.
It. Might. Not. Work. There are no guarantees.
These stories. These deaths. These children and broken-hearted families. We stand with them. We know these families are living the truth that we often want to forget and that society doesn’t always understand or acknowledge. Proof that food allergies can be deadly. Proof that deadly reactions do happen to responsible children and adults. Proof that food allergies are not just a nuisance we live with. They are a real, powerful reality that requires vigilance at ALL times.
Food allergies require empathy and help from the community. This particular story followed news of a school administrator who made light of food allergies, and of parents and community members who thought she was actually funny. She rightly paid for her comments with her job, but these children and families pay with a life. A precious life. There are no appropriate jokes when it comes to this.
All these thoughts swirling…I found myself this morning, and again this afternoon in our downstairs bathroom, sobbing. Stifling the sound so the kids wouldn’t hear me. I’m not sure I can explain this to my 4-year-old today but I know the day is approaching when we will have to. So here I am. Broken. Helpless. Fearful. Sucking air.
The burden is heavy. And much too real. I wish he didn’t have a food allergy. But he does. And we must go on. I cannot stay in the bathroom all day weeping. I will not squander the moments I have with these kids wallowing in fear. I can’t prevent the fear or the unknown, but I do have control over my own actions.
SO I pull myself together and focus on what I can do:
- Keep going: I wipe my eyes and compose myself and open the bathroom door. I put one foot in front of the other, pull myself up, and move forward. I continue to love and parent our children. They are a gift, not to be squandered.
- Pray: I pray for all allergic children to be protected. I pray for a treatment that would be effective when Epi-Pens are not. I pray for answers to why allergies are affecting kids with increasing frequency and for a way to stop it. I pray that these deaths would cease and that no more would be lost due to FOOD; eaten or touched. I pray that my son will NEVER have a life-threatening reaction.
- Trust: I do the only thing I can do in moments like this. I put my faith in the Lord and remember that He has given me these children to raise and care for. I remember that He is Lord and He is sovereign and faithful. I pray that God would help me trust Him to protect our son because trust doesn’t come naturally. I believe that no matter what, God will see us through whatever happens. I trust in His promises in scripture to give us rest and peace:
- “Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls.” – Matthew 11:28-29 (ESV)
- “Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” – Philippians 4:6-7 (ESV)
- Advocate: I will speak out for my son’s safety no matter what the situation. I will educate others and make sure they understand his needs and the true risks of his needs not being met. I will do whatever I can to make the world safer for him.
- Equip: I will continue to educate our son how to protect himself. I will ensure that those caring for him are educated as well. I will take time to learn all I can about allergies, scientific research and technologies.
- Be Grateful: I commit to be grateful for each moment and that my son is sitting in my kitchen eating his cereal. I will be grateful we found out about his allergy with a test, not an ER visit and that he has never had a life threatening reaction. I will be grateful for family and friends who made our holidays nut-free and safe this year so we could relax and enjoy the day. We are so grateful for all of you who keep our son safe…it truly takes a village…
My son smiles as I walk in. He and his sister won’t know why they receive such intense hugs and kisses on the head. Today, they are oblivious. I’m glad I can protect them from this reality for a little while longer, but the time is coming when they, too, will have to know and understand these things. Today I am grateful my son is a carefree 4-year-old boy who knows there is food he cannot eat and medicine he has to carry. For now, he thinks nuts will make him feel sick and knows to ask before he eats anything…
But he knows nothing of death. This looming potential threat won’t always be hidden from him. His own fears will be tangible, real and heavy. The responsibility will be huge. My daughter will have fears for her brother’s safety, just like my husband and I do. I pray that by the time they have to carry this burden, I will have learned how to carry my own so I can help them carry theirs.
In the long run, I can’t control this, fix it, or heal my son. I can’t make his allergy go away, even though I would gladly take it on myself if I could. I will keep moving on when fear rises because there will be plenty more days like this. The fear creeps up often; when I’m unprepared with alternative safe food, when we’re in an unknown church, school or home, when a dessert loaded with nuts passes by us in a restaurant, when I learn my son ate something before a label was read, and when I read stories of those who have had reactions or have paid the ultimate price. I will keep looking forward and prepare as best I can for the days when I send him to kindergarten, summer camp, and someday, college. I know this fear will certainly be present in the days to come, but I cannot let it rule me.
So I hug these two little ones tightly. And today, I rise above the fear.