It was the end of November and our son’s first Thanksgiving and Hanukkah.
Everyone in our family shows love by way of food. That’s a typical Jewish thing. “I love you. Let me make you something to eat.”
“What can we cook for the baby? Will he eat the turkey?”
But our son is deathly allergic to many foods, including nuts, dairy, eggs, sesame, strawberries and raspberries. In our son’s first years of life, we’ve completely lost the capacity to trust others in his care and feeding , and this will shape holiday gatherings for us with family and friends now and into the foreseeable future.
Our son’s food allergy diagnosis has already been a long journey and he’s not even two. How did we get to this place of ‘mistrust’ so soon?
We began introducing solid foods at about 6-months and red patches — that we later learned were eczema — began appearing on his skin.
Then, it was hives. Benadryl, for the most part, did the trick calming them down.
We took him for allergy testing. Almost everything we tested him for came back positive.
We were given an EpiPen prescription.
It felt casual. “Your kid has allergies. Fill this prescription.”
When we got the diagnosis, there was no heads up on how scary it could be to have to use an EpiPen. There was no discussion about how life altering it would be to see your child struggle to breathe after eating something you thought was safe, or the importance of evaluating every single morsel of food in your kitchen you might put into his mouth, just to keep him safe. There was no how-to guidance on navigating family and social situations that are all too often food focused and full of good (if misguided) intentions.
We learned a hard and important lesson about trust soon after our son’s diagnosis.
A friend offered to share some vegan mac n’ cheese she’d made for her daughter. A nurse practitioner, she knew our son’s allergy history and we trusted her completely when she said, “There’s nothing in it that would be a danger to him. “
A few bites in and his face became puffy red. Hives appeared all over his body. We got the Benadryl. My wife ran to the car to grab the EpiPen just in case.
His throat started closing. My wife was screaming, “He’s choking. Use the EpiPen,” while she called 911 and ran to get help from a neighbor who was a cardiologist.
I blanked after that. Everything slowed down. This was life or death. I couldn’t read. I couldn’t put letters together. I’m back and forth with our friend, hoping she’s calmer than me, hoping she can read while I can’t.
“Do it. Do it. Can you do it?” I say. “Is he breathing?”
“Yes, he’s breathing.” She says. “I got it. I can do it.”
“Go. Go. Go,” I scream! Shaking. Holding my son. At this point I’m convinced he’s no longer breathing.
She jabs. I breathe. He breathes. He cries. I’m still shaking. I run to find my wife, cradling our son tightly against my chest as I run. She’s in the middle of the street with the neighbors, the doctor, the guy who was going to save him.
The ambulance pulls up. We get to the hospital. After some more epinephrine, some steroids and some time, my son is back to himself.
But my wife and I — we are never the same. The near loss of our son, this little person we love more than life itself, has changed us forever.
We’ve completely lost the capacity to trust others in the care of our son.
So, the holidays arrive as they arrive each year…except this year we have a son with severe food allergies.
“What can we cook for the baby? Will he eat the turkey?”
Well, the turkey is full of stuffing and lathered with butter so, “No thank you. No turkey. We’ll handle his food.”
There’s lots of this back and forth. When your baby has so many allergens to avoid, you continually find yourself saying “No. No thank you. Please don’t.”
Holidays are a time to give, to gift. And when the act of giving and gifting includes food, it feels rude to push people away when what they’re doing comes from love.
But they don’t understand. Most don’t, that is.
We didn’t either. We didn’t until we misplaced our trust and almost lost our child.
It’s one of those “unless you’ve been there, you couldn’t possibly understand” situations.
On the upside, while it has been extremely hard over the holidays to constantly say, “No. Please do not make food for the baby. Please do not put anything into his mouth. Only his mom and I are allowed to feed him,” we’re finding that the people we surround ourselves with are more understanding than not. They want to keep him safe. They do not want to cause harm. And when you explain that, "the safest thing we ALL can do is stick to what we know is safe," they get it.
What I’ve learned is that there is no middle-man to guide you on this food allergy journey. You need to figure these things out yourself. That’s not to say there aren’t wonderful resources or communities to take part in, but there won’t be someone to hold your hand through it all, and when it’s a matter of life and death, you might have to get through it alone.
This is a journey for all of us, our circle of loved ones included.
We are learning ourselves and we are also teaching those around us what we learn as we learn it.
Some Resources For Newly Diagnosed Families (suggested by Allergy Force)
Michigan Medicine video on food allergy with a great demo on using an auto-injector at 3:42
About the Author: A Bethesda, Maryland native, the author Rachel Grossinger currently resides in Philadelphia with her family. She works as a full time Product Marketer. During her free time, she likes to spend it at the beach, traveling, watching or playing music, and spending time with loved ones.
Image: Thanks Taryn Elliott on Pexels and Wix Media