HEATHER HEWETT
tHE THIRD TIME MY DAUGHTER ALMOST DIED from a sip of milk was entirely my fault. It was a late afternoon on a hot summer weekend in 2010. My six-year-old daughter ran around the backyard with her little brother while my husband and I cooked dinner. Mark grilled, and I chopped vegetables. Very 1950s. I carried plates and glasses to the deck while the kids laughed and screamed. We sipped white wine. I felt myself relaxing into the evening.
I poured drinks for the kids. Cow’s milk for Liam and soy milk for Jessie—because of her dairy allergy.
I set their glasses down beside their placemats, making a careful mental note to remember who was sitting where. I realized I’d forgotten the margarine and went back inside, where Mark was cutting the grilled chicken.
I carried the margarine and a plate full of food back to the deck. As I opened the door, I heard a scream.
Jessie was pushing her chair back from the table, her eyes wide with terror. “My mouth is burning!” She coughed and spit. “It’s spicy! It’s spicy!”
My brain jerked out of its serene state. Jessie was sitting at Liam’s place. Where I thought he would sit. Where he sat the night before. Jessie’s skin was turning an alarming shade of red. I turned to Liam, who looked at me.
Jessie screamed again.
“You gave me Liam’s milk! You gave me Liam’s milk!”
She threw up.
“Oh my God,” I said, unable to move.
“Get the EpiPen!” yelled Mark.
The events that followed will be familiar to most parents of children with anaphylactic allergies: the taut moment of plunging an enormous needle into a screaming child; of trying to breathe while reciting important numbers (911, our street address); of being pierced by the wail of an ambulance descending upon us; of listening to the sudden silence that wrapped itself around us.
As the ambulance pulled away with my husband and daughter, I looked down at my three-year-old son and tried to remember what to do. I needed to gather things. Items we might need: clothes, books. Food.
Our dinner lay untouched on the patio table.
I could see Liam working through what had just happened. “It wasn’t Jessie’s milk,” he explained to me. “It was my milk. She drank the wrong milk.”
“I know, sweetie,” I said, holding back tears and cursing myself under my breath. “It was an accident.”
But I didn’t really believe myself. I knew exactly who to blame.
• • •
A friend of mine, a mother of two kids who are allergic to more foods than my daughter, believes that food allergies provide much-needed perspective on the whole parenting project. For example, sugar. She is a committed organic/locavore/foodie who just can’t get worked up about sugar anymore. “So what?” she said to me one day, as her two sons munched on Skittles at the playground. “As long as it doesn’t kill them.”
It’s true that certain things recede in importance, and it becomes much easier to resist the ideals of the Good Mother. Okay, so my daughter’s hair isn’t brushed and she hasn’t showered all week. But at least she has safe and healthy food to eat. I’ve learned to accept being a “good enough” mom in many areas.
Embracing less-than-perfect mothering is one thing, but negligent mothering is entirely different.
To be sure, most of the time I am not a negligent parent, yet I have not always maintained the vigilance necessary to keep my daughter safe. The stakes are high when your daughter has life-threatening allergies to seven major foods, plus asthma and Celiac disease.
The first piece of evidence: the milk mix-up.
Shouldn’t I have paid more careful attention? Why did I let down my guard? And why the hell was I drinking a glass of wine while cooking dinner?
The second piece of evidence: the time that Jessie drank from a sippy cup in the fridge that the nanny swore contained soy milk. We ended up in the hospital.
Why did I believe that nanny? Did we let our attachment to her outweigh my daughter’s safety?
The third piece of evidence: my inability to give my daughter a shot of epinephrine in either of the above instances. Both times, her life was saved by paramedics and my husband.
Why was I so afraid of giving her an injection? What if someone else had not stepped in and saved her?
“It could have happened to anyone,” Mark said to me after the milk mix-up. “Stop blaming yourself.”
But I couldn’t help it. I replayed the scene in my head, again and again.
Because when you have a child with life-threatening allergies, you can’t let down your guard. Not for an instant.
And so I am haunted by my failures and my lapses. By the “what ifs.” They terrify me.
Few women can escape the Good Mother. From the photos of celebrity moms to the articles in parenting magazines, she is everywhere. Our culture endlessly produces messages about what we must do in order to join her ranks, and what happens when we fail. The resulting range of acceptable behavior is about as wide as a slender, steep path up the side of a mountain.
For some of us, like me, the path narrows even further because of our situations. It’s as if I’m pressing against a rocky wall on one side and leaning away from a plunging cliff on the other. Against my will, I’m climbing without a rope.
The directions I’m given about how to proceed seem to conflict. On the one hand, I need to exert vigilance and control; on the other, I need to let go. These mixed messages collide inside my brain, and I hesitate.
The result? Sometimes, my daughter isn’t perfectly safe. I’ve put her in charge of her own EpiPen, and so it is forgotten at movie theaters, birthday parties, and parks—leaving her without the medication that has saved her life multiple times. Then there was the time that I got confused between her maintenance inhaler and her emergency inhaler, which meant that she wasn’t taking the proper asthma medication for months. During this time, the poor kid ended up in the hospital twice, once on Christmas Day.
If only I could embrace my inner slacker mom—but I can’t. Because this stuff matters. Unlike most moms, I don’t have much of a margin for error. One misstep and we go plunging down.
Other times I know I’m doing my job, such as the afternoon I passed out hand wipes to twenty four-year-olds at a pizza party and made sure that each and every kid wiped her hands. Or the summer I dropped my daughter off at sleepaway camp and never left; her multiple allergies made the newly minted nurse feel “nervous.” I remind myself that I’ve spent hours talking with teachers, principals, nurses, religious education counselors, camp directors, babysitters, and other parents about how to keep my daughter safe. But even in these moments, I can feel myself treading a different kind of line. The line that stands between good mothers and overprotective, neurotic ones.
You know, the “crazy” moms.
Deep down, I feel crazy too. But I don’t want to be put into this category. I want to be reasonable. And so I temper myself, and at times keep quiet when maybe I shouldn’t.
I have stayed silent while forty kids were shaking Ziploc bags filled with milk in order to make ice cream (a parent-led science project) in my daughter’s classroom. I just didn’t have the heart to ask these parents not to bring their project into school. They had called me ahead of time to suggest that I bring soy milk for Jessie’s plastic bag, and they were very enthusiastic. Plus, it wasn’t like I was spending any of my free time coming up with super-cool science projects for kids.
I have refrained from asking the other parents in my daughter’s class not to bring in cupcakes for their children’s birthdays. For holidays. For class parties. The list goes on.
I have worried that asking other parents not to do this would be seen as evidence that I was too pushy or overbearing or overly sensitive, that someone might feel I was being “unreasonable” to expect that other kids should alter their behavior—or lose a special learning opportunity—because of Jessie.
In none of these cases did I feel that my daughter’s safety was truly imperiled. She wasn’t eating the ice cream, after all. But I felt nervous. I worried about bags rupturing and milk spilling all over the place and Jessie feeling unsafe and generally left out. All of which came to pass, by the way. And in the end she was fine—of course she was fine—but maybe that’s not all I was worrying about.
Maybe I didn’t want her difference to mean her exclusion.
Maybe that’s why I don’t always speak out when I wish I could.
Maybe I want some of the other adults in the room to open their eyes and see what’s going on.
In a world where food appears everywhere—every social gathering, classroom, and celebration—anxiety about social exclusion complicates the fear that my daughter might brush up against death. And so Mark and I have made choices, when we could, to let Jessie be a part of things and learn to live with her own anxiety, to recognize the difference between being uncomfortable and being unsafe.
I’ve had to learn to recognize this difference myself.
It helps to travel this road with another parent, to have someone with whom I can talk these things over. It helps to have a daughter who is growing up and taking control of her own life, bit by bit. The day that Jessie took one bite of fish and felt her throat closing, and told me clearly that she needed an EpiPen—and I gave her one—was a day of triumph.
I might have been trembling, but I placed my faith in my daughter’s absolute certainty. Her beautiful moon face, brown eyes fixed upon me. Now.
Who was this amazing girl child in front of me? So preternaturally calm. So fearless.
She has made this journey easier, my daughter. She has made it possible for me to unclench my grip, little by little, to focus my energies on working with the school nurse and other adults to make sure they can recognize allergic reactions, use an EpiPen, and form an invisible if imperfect safety net around her. And I’ve felt my fears recede, little by little, as my daughter gains confidence in her ability to find her own path.
She’s restless to rise above these cliffs, this one.
And then it occurs to me. Maybe she feels safe because I’ve been climbing, too.
Maybe it’s just my perspective: I’ve been looking down instead of up. I haven’t realized that my daughter is ready to soar.
All parents know the fear of losing their children. Whether or not we acknowledge it, we feel its shadow. We see it pass before us when we glimpse a child with cancer, or when our teenagers pass their driving test.
Seven years ago, a child drowned in our neighborhood pond in the middle of winter. He had taken a neighbor’s dog for a walk, so proud of his new responsibility, but they strayed out onto thin ice. I didn’t know the mother, but months later a friend told me that she had been seen at the local coffee shop. I was haunted by the thought of this woman, sitting alone at a table, sipping coffee and gazing out the window. It was her only child.
If we’re lucky, we don’t have to face this possibility. We push it away and bargain with God and cross our fingers.
Having a child with food allergies is no different. It’s only that some of us are tempted—at least I am—by the thought that we can control every detail of our children’s environment, in part because that is what is asked of us. Perfection becomes an expectation. We begin to secretly hope that maybe we can protect our children forever.
This, of course, is an impossible dream.
I want to reach out to that mother in the coffee shop. I want to say, it was not your fault. We are not in control of the winter, the dog pulling the child, the ice. I want to put my arms around her, to comfort her sorrow, to cry along with her.
It seems easy enough, this work of rejecting the myth of the Good Mother and embracing the good-enough mom. But to understand how difficult this task truly is—and, perhaps, how necessary—one must peer over the edge into the abyss while trying to remain calm.
We must hold our children close, and then we must let them go.