Last Saturday, I went upstairs to start my grad school homework I neglected all day because of our five kids’ sports schedules. Just 20 minutes later my husband came into my office worried that John might be having a reaction. I expected to go downstairs and put a plan into action. But what I didn’t expect was to find my son at the bottom of the stairs, eyes red, teary and panicked. I’ve always read about “the impending sense of doom” in some cases of anaphylactic reactions. And here it was, the look of doom staring right at me. In that one brief moment, I KNEW.
I started hammering him with questions as I jumped on a chair to reach the medicine cabinet over the desk, looking for the Epipens:
Does your mouth hurt?
Does your tongue feel funny?
Does your throat feel like it hurts?
Does your tummy hurt?
Do you feel like you are going to throw up?
“I’m scared mom”.
It’s OK John, keep talking to me.
At the same time, my husband relayed the story of what he ate – a Popsicle with dairy in it. He bought it earlier in the week for the other boys, and John grabbed one for dessert after checking the labels. Contains Milk was not bolded in the list, but he failed to see the first ingredient in normal typeface – Nonfat Milk. John blurted out that he ate half of it before his mouth started hurting. He felt the reaction almost immediately, but didn’t want to tell his dad yet. So he got a paper towel and tried to wipe his tongue clean first. He said he felt worse by the second and was forced to tell my husband he was having a reaction.
I grabbed the Epipen and firmly injected it into his outer thigh. Michael, his four-year old brother was by his side looking up at him in stunned silence. David and Matthew, (9 and 8) sat on the couch nearby, but I was too distracted to know for sure what their reaction to John was. He said started feeling better almost immediately but I knew we had to get him to the hospital right away.
This is where I made a huge mistake. In a panic I was worried that if I called 911, they’d take him to the hospital nearby which is NOT where I wanted him to go (I had a horrible experience there a year ago and vowed never to return). I wanted to drive him to a much better hospital 15 minutes away. As I drove, John told me he still felt sick and his throat started to hurt again. In that moment I knew he should have been in an ambulance getting monitored instead of sitting in the front seat of my car. I was so angry at myself – I should have known better. Lesson learned, and will never be forgotten.
When we got to the ER, it was of course, packed with all sorts of trauma; people throwing up, a knee gashed open from an accident, an elderly woman who was too weak to fill out her own paperwork and a little boy who split his eyelid open. I knew John’s vitals needed to be taken right away. When the woman behind the glass window asked me, “Can I help you?” I became the Shirley McClaine character in the film TERMS OF ENDEARMENT – the part when she started going crazy on the staff so they would give her daughter pain pills. Though I didn’t go that far, I did let the nurse know in no uncertain terms he needed immediate attention and told her what happened. I thought he might be experiencing a bi-phasic reaction. The nurse stood up and called a doctor right away and John’s vitals were immediately monitored. His blood pressure and pulse ox were subnormal. He was dizzy, quiet, and weak. He started shaking and shivering violently. He was nauseous and wanted to throw up. He look terrified and confused – wasn’t the injection supposed to make it all go away? I tried to explain to him, yes, many times it does. But sometimes the injection simply buys time, and the body continues to react.
I was alone with my son in the ER, holding him, pushing his long, golden hair away from his deep brown eyes and praying to God that his body would fight back. I was angry, sad, scared and numb. I told him he would be just fine, and that he would feel so much better soon. With every reassurance I gave him, I needed to tell myself. Eventually he did overcome with aggressive treatment and he started to feel better and his condition stabilized. The doctors and nurses were incredible, especially one doctor in particular. He spent a lot of time with us, and asked a lot of questions about food allergies in general. He told me when he was in medical school he wanted be an allergist, but the ER is where he landed. Before we parted, he told me he learned a lot from our case and thanked us.
Over the next few days things returned to normal for John. He went back to school, soccer, basketball and band practice. He hung with friends and played play station with his brothers. But for me, I was stuck in the sadness of watching my son nearly die from a goddamn popsicle. Everyone asked me all week – how is John? How are you? And every time they did, I felt the trauma all over again. I kept thinking about the Shannon’s, Hom’s and Giorgi’s – and every other family who have literally watched their child die from a food allergy. I wondered how did they ever find the strength to go on? How they continue to fight and advocate for the rest of our food allergy children? How does a parent go on after losing their child? I’ve lost both my parents (my father from lung cancer at 14 and my mom from pneumonia at 22), and that pain and loneliness never really goes away. But when I had my children I started to finally feel love once again. What I experienced with John last weekend rattled me to the core. I became numb and terrified and retreated into myself all over again – because the very thought of losing one of my children put me into a tailspin of pain and abandonment. It’s the unspoken symptom of being a parent of a child with a food allergy – the vulnerability and fear we live with every day. The fact that John could face anaphylaxis next week, next year, or maybe in 10 years is something we as food allergy parents have to live with. And then maybe that ONE time he wouldn’t make it. Like last Saturday. When he almost didn’t make it. I know I can’t dwell on it, but I can’t forget it either.