Monday, October 12, 2015

The Reality of Being an Allergy Parent

A little over two years ago, Will had a bite of peanut butter toast that would change our parenting with him for what likely will be the rest of his life. In that moment, we became the parents of a food allergy kid and the most common and comforting of foods would become the most dangerous.

You don't know what you don't know. And you don't know what everyone else doesn't know until you suddenly become in the know. And it's amazing how that perspective of knowledge versus lack of knowledge and lack of understanding changes you into someone you never thought you would be.

This fall has brought Will into the world of what I will call the official preschooler. He's in a one-day-per-week cooperative preschool, he goes to a playgroup once a week while I go to my moms' group, and he has speech therapy twice a week where he interacts with other kids as well. He's getting invitations to birthday parties for friends, we go to parks and playdates, we go out to dinner and lunch and he has opinions and wants and desires and an imagination that he can clearly express.

His bright blue eyes and his wide, gapped-tooth grin and giggle melt my heart and his small, giant hugs could comfort the largest beast. The deep expression on his face when he takes his quiet time, snuggling his Monkey close to his face is just so peaceful I could watch him sit like that for hours.

I understand I'm biased... but my son really is an amazing kid.

As his parents, we live in a scary reality where a simple peanut butter and jelly sandwich at a playdate or dripped maple walnut ice cream on a park bench can put our son's life at risk. We've been told to continue to give him the one nut that's been safe, and every time he coughs after he's had some I worry his body is rejecting that too. When we're out, everything gets wiped down at a table before we eat just incase someone came before us that had something with an allergen or brought their own food that may contaminate our son's meal.

You don't know what you don't know until you have to know. And wish you didn't have to know.

I turned around 20 minutes into an hour-and-a-half trip to turn around and retrieve a forgotten Epi-pen. I've had to stop a little girl waving a peanut butter sandwich around a train at an amusement park from sitting near our family - to the exasperated reaction from her grandmother and an annoyed but sort of understanding reaction from her mom. I've had to ask another mom not to put her breakfast that included huge, exposed walnuts down in front of him. I've had to research and explain label reading to the other moms in our preschool cooperative. I've spent a good chunk of time texting with another mom to make sure that the birthday party he'll be attending at their house will be safe (and screened the pizza place they'll be ordering from too). I've had to ask a friend to double check the ingredients to the stuffing she'd be serving at her house for dinner when we came just to make sure it wasn't cross-contaminated with anything that might pose a danger. I debated whether or not to leave a change of clothes in the basement to change into after going out to dinner with friends just incase we got suspect nuts on our clothing during the meal.

And that... that's just in the last week.

And our little guy *only* has two allergies. There are people who have far more that have far more dietary concerns and social situations to watch out for. There are kids whose parents MUST carry around a "safe snack" back to birthday parties and outings to amusement parks because their allergies are so extensive that bringing their own foods are the only way they can guarantee their child's safety. We have friends whose son has milk allergies so severe that he's "allergic to the whole cow" - he cannot have beef either - among other food allergies both with him and other family members as well. Another friend has a daughter whose food allergies made her so food averse as a baby that it has taken years for them to get her to try new foods because she trusts none of them.

There's a reality that you have to live in as an allergy parent that is hard for those who don't live it themselves to really grasp. I say this as a person who attempted to empathize and understand what it was like to live with allergy concerns for years... you just don't know what you don't know until you have to know.

You don't know that exposure to an allergen can cause an immediate extreme reaction that Benedryl won't help.

You don't know an immediate extreme reaction needs an Epi-pen hit within seconds.

You don't know that a hit with an Epi-pen requires that 911 be called immediately and that a trip to the hospital in an ambulance is a requirement.

You don't know that even after an Epi-pen hit, an ambulance ride, and treatment in emergency/acute care that your child could still have what's called a biphasic reaction later on... when you least expect it... including in their sleep. You don't know that this reaction could cause the cycle to start all over again.

Until you live with the reality of a potentially anaphylactic reaction causing food allergy, you may intellectually understand the ramifications of exposure to an allergen... but you don't really feel what those ramifications can mean.

If I tell you that my son could die with exposure to peanuts or certain treenuts... I'm not exaggerating.

Yes, I have his Epi-pen. Yes, we know how to use it and we have a crash plan in the event of exposure. And yes - I am fully aware of how annoying I sound when I start asking questions about ingredients in what you're eating or how psychotic I seem when I dive at your kid when they come at mine with a peanut butter chocolate chip granola bar.

I didn't know what I didn't know until I wondered if I was going to be seconds away from an anaphylactic reaction in a house with no Epi-pen, no Benedryl, and no idea how to help my 17-month-old son make his eyes stop watering or the hives go away. I didn't know what I didn't know until I sat in an allergist's office and watched the bumps of a skin-prick test rise up on my baby's back.

I had a new perspective on what hope is when I sat on the phone with the same allergist and went over the results of my son's blood test last spring and asked for translations of the numbers he was reading off to me... and was told that his numbers were "low enough" to indicate that he will very likely be eligible for an in-office food challenge in a few years if they stay this low.

To think that there's a chance that what most of the world considers normal could kill my son... and that maybe, just maybe the world could be normal for him someday too. Hope.

When Will was 9 months old, he had a severe case of croup. It was bad enough that while on the phone at midnight with our pediatrician to find out what to do, she heard his barking cough and told us we shouldn't bring him to the ER ourselves - we needed an ambulance to help us to keep the carseat propped up safely to keep his airways open.

Sitting in the back of the ambulance with my baby boy, watching the headlights of my husband's car behind us, staring at the face of this helpless, sad little one clinging to his taggie blanket with his giant blue eyes... it was the hardest experience I've ever had as a parent so far.

I never want to sit in the back of an ambulance worrying about my child's breathing again.

And now he has gotten to the age that we have to train him how to protect himself too. We have to remind him every time we go anywhere that he can't share snacks with other kids and that he can only have things that safe people tell him that he can eat. He has basic knowledge of how to work an Epi-pen and has helped me show people how to use it.

It is our job to help him understand the seriousness of his allergies.We had to tell our 3-and-a-half-year-old that peanuts and treenuts could make him sick. Really really sick. So sick that he would go to the hospital in an ambulance and he could possibly die. It is a hard thing to try to explain to a toddler on the verge of kidhood, but it's one of the most important things that we need to have him understand.

That's the reality of being an allergy parent.


For more information on food allerges and how you can be a support to those in your life that have them, please check out FARE's website.

Also, this Halloween consider taking part in the Teal Pumpkin Project and help make the night fun for everyone.

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