Life With Food Allergies: How FPIES Made Me A Better Mom

May is Food Allergy and Celiac Disease Awareness month.  I’ve been avoiding the topic because it just feels too big and all-consuming.  This is something I deal with every single minute of every day as a mom to a toddler with FPIES, which in short, makes my son allergic to food.  He’s just a few weeks shy of his second birthday and has exactly 17 foods he can safely consume.

I mention his food allergies often on social media.  I’ve written about it here and over on The Leaky Boob.  I sometimes get lost in the specific restrictions and frustrations FPIES inflicts on our little family.  I start to resent how profoundly  our lives are marked by this disease.

But here’s the thing about being a parent to a remarkable kid with special challenges: it has made me a better mom, and on a larger scale, a better human.

I take nothing for granted.

After nearly losing my son to a stroke 36 hours after he was born, I am keenly aware that his presence on this earth is a gift.  When his first foods made him vomit to shock, and he was restricted to only breastmilk and a little organic coconut oil for the first 12 months of his life, I wept with relief when he passed spinach at 13 months with flying colors.  It never occurred to me to be thankful for every breath, every bite of food that passes my lips, but he reminds me. His breaths, his bites, his life all serve as a reminder to be grateful.

Empathy is a second skin.

I’ve always been fairly compassionate and empathetic, but having a son with chronic allergies has given me a sense of empathy I never knew existed.  Any parent who has walked a rocky road with their kids can agree: You never look at a kid or family with special challenges the same way again.  It’s no longer a detached empathy.  It becomes personal to you, too.

I’ve become the anti-helicopter parent.

It’s counter-intuitive.  My son is allergic to food.  And guess what?  Food is everywhere.  Play dates, people’s houses, playgrounds, toddler music class, dog food dishes, restaurant high chairs and booster seats, trash cans, floors, walls, ceilings, shopping carts, faces, hands, mouths, toys…you can’t escape it.  I have to be a helicopter parent in social situations, especially when other kids are present.  He has so many restrictions, and when I have the opportunity to let my guard down in a food-safe place, I do.  I let my son roam within my eyesight, climb and test his limits, and explore to his heart’s desire.  I encourage him to play on his own and have age-appropriate adventures and only intervene when absolutely necessary.  After seeing him suffer more in two years than many will suffer in a lifetime, the minor bumps, bruises, and messes don’t seem to bother my son, so I don’t let them bother me, either.

I put up a fight.

Before becoming a parent, I often felt nervous expressing an opposing view point, or challenging authority.  I feared losing friends (and even family) by becoming too opinionated or outspoken.  Having a child with severe allergies makes it impossible to not offend people.  I feel zero hesitation telling strangers not to touch or offer food to my son. I wipe my friends’ kids down with a wet paper towel before they play together. I speak often and loudly about respecting parents and their choices, allergies or not.  I openly advocate for causes I believe in without apologizing, even when I know it will turn some people away.  Most surprisingly, I don’t really care.

 

I question everything.

I call food companies and inquire about any hidden, unspecified ingredients. I inspect every space that has been deemed “safe” for my son.  I question every test, procedure, medication, and diagnosis my son’s doctors try to administer, and generally annoy the crap out of them.  And I have no problem educating doctors about the specifics of FPIES because most don’t know about the syndrome, and if they do, it typically isn’t much. It’s not their fault.  FPIES is relatively unknown, and until this month, didn’t even have a medical diagnosis code.  Considering I’ve spent the last 18 months immersed in research, and am an expert when it comes to my son, I don’t expect the doctors to have a firm grasp on his condition.  I listen, I stay open, and I respect their training. Then I weigh the potential benefit and the potential harm and advocate for what is best for him.

I own my strength.

I pumped every single day for 21 months.  I fought post partum depression and PTSD while figuring out my baby’s food allergies and dealing with insurance and doctors and mounting medical bills.  I went on a Total Elimination Diet and stuck to it for a year in order to keep my milk safe and allow my son’s gut to heal, even though I dreamed about Eggs Benedict and wanted to submerge myself in a vat of guacamole. I had to be disciplined.  My son’s life depended on it.  I also fought to keep my marriage intact, even when the pressure of that first year nearly shattered us. Owning the hardship and vulnerable places allowed me to own my strength, too.

I crack jokes ALL THE TIME.

I feel my feelings, and I can get stuck in FeelingLand.  Humor is one way for me to deal with the overwhelm.  I have fully embraced my snark and wit and unladylike bathroom humor.  Remember that quote “the only way out is through”? I choose to get through it with laughter and sarcasm.  Because it doesn’t matter HOW you get through it, it just matters that you do.

Gratitude.

Empathy.

Trust.

Tenacity.

Curiosity.

Strength.

Humor.

These are the ways FPIES and my son have made me a better mom and human.  I’ll take it.

Eff you, Fpies.
Carrie