Food Allergy PTSD

Parents of kids with food allergies tend to have a form of PTSD. It’s a commonality that ties us together. We get it. We know when we’ve run into another parent who understands us. Most parents empathize, but only we can truly understand.

At least that’s how we feel.

Food allergy PTSD leads to a lifetime of sensing threats around corners, threats both real and imagined. We have intimate knowledge. We have the knowledge you can only get when you are holding your baby and running for help while he is dying in your arms. The one job we are tasked with above all others, to keep this child alive until he can do so on his own, is slipping away and every second counts and you know, KNOW that were this a hundred years ago you’d be burying your baby. Having survived it you are changed. Broken. You are facing a changed landscape and a changed job. It’s unfair but it’s pointless to dwell on it.

I remember thinking terrible things about the parents of young kids at Target or Wegman’s or any of the other places one finds themselves mixing with young families before having kids of one’s own. I remember thinking, ‘Wow. How can they talk to their kid like that? It’s just mean. I’ll never be like those people.’ I remember thinking of friends that had a kid, ‘I’m tired. I’m always tired. Who are these people that think they’ve cornered the market on tired.’ These were reasonable thoughts to have. I had no freakin clue what the hell I was talking about. Having no clue was my perspective. Still is in many areas of life, to be honest. The fact that it was completely uninformed and laughably ignorant doesn’t invalidate that perspective.

The only thing that could revoke the validity of my perspective was having kids. Since then I have caught myself scaring my three year old into compliance during a short trip to Target. I like to think that my terrifying, clenched-jaw frustration was less upsetting to the ecosystem of the store than the screeching of others. Of the parent of three trying to get the grocery shopping done without a full meltdown, but to anyone that saw me around a corner, grasping the scared little boy’s biceps and staring him in the eye with the insane focus of a cartoon villain I’m certain mine would be the one more deserving of a call to CPS. Dad scary can be truly scary. I remember this from my dad, who I knew all along was the most gentle and loving and thoughtful father the world has ever seen. But toddlers require different. My mother once caught me at 5 or so playing with matches inside a camper and when she told me ‘Just wait til your father gets home.’ I knew enough to be terrified. Since it is required to scare kids early on to make the point, we change. We have to. And when we do we feel shame around other parents who might be having a good day while I’m staring at my little boy and doing my best impersonation of DeNiro in Cape Fear.

When it comes to other people and our kids food allergies it’s insane to think they can have our intimate knowledge even after they’ve heard our harrowing tale. Only we have that. That’s why we are each other’s best support. We can speak shorthand. We can elaborate on our stories, on our near misses with one another and know that we are understood. Regardless of how compassionate, empathic, caring and sensitive we are, for most of us, we’d be lying if we said that we didn’t change when it happened to us.
For many of us there’s residual shell shock and we find ourselves frantically unloading on kindly people that will listen and simply increasing our volume because why shouldn’t everyone share my perspective and this fight. At least all parents. My god, your hummus and carrots are a literal loaded gun free to be played with in any room where my little boy is. Don’t you get that? Is hummus really that important to you? ARGH!! You’re awful!!

Intimate knowledge can be like that. It can seem so true to you, so elemental that you forget there was a time before you had acquired that knowledge. Acquiring it leaves you changed. When I became a dad I was surprised by a few things. Certainly the amount of time there is in 24 hours. I thought I had that concept down, but I was way off. I was surprised by how aware of my own mortality I became. That’s how the responsibility hit me I suppose, that and the love. Also, I was surprised by the instant sense of connection and empathy I felt for parents everywhere. We can get as modern as we want but the primal nature of holding your newborn baby, however he or she got to your arms, is universal. Nothing was the same ever again. Almost immediately I was sliding away from my former perspective and a new life was stretching out before me. As it unraveled it revealed understandings of my life and its meaning. Now that I was here, on this side with the other folks that had had this beautiful and magic epiphany, I knew it was where I wanted to be. I proceeded on this path and began to find less and less in common with the people who hadn’t had kids. I was fully a parent.

Then I was born into a smaller family of parents. The rare club that was more exclusive and less desirable. I became a food allergy PTSD dad. I became a husband that had to relearn how to relate to his family and the world with this terrible new knowledge. Our son had an anaphylactic reaction to a single bite of a sandwich with a small amount of dressing on it that contained a small amount of sesame and it nearly killed him. It would have had a seed fallen to the floor from our bagels or our Chinese food that we had eaten regularly that first year and he had gotten to it while we were in the other room. Its traumatic information to live with. As hard a time as I had relating to parents before having kids, and as hard as it became to relate to people without kids after having them, it is now equally hard to relate to parents that don’t worry about their kid’s immediate environment every minute of every day. I just don’t get them. I can’t. What’s worse now, I somehow feel like they should all be able to relate to me. The childless, the parents of kids without life threatening food allergies, everyone needs to be in this thing with me. Right?

It’s easy and understandable to lose perspective. Sometimes it’s even advisable. And since it’s our kid’s lives I’m all for erring on the side of crazy if there’s any question of safety. But from time to time we have to poke our heads out of the bubble and remember that it’s a great big scary world out there for a lot of people. For a lot of reasons.

In my son’s classroom, where they will see me and confront me and Charlie every day, I may need to ramp up the nutty. Perhaps it will cause that extra attention when it’s called for, which it may never be, to save my son’s life. But if I want my message to be heard by the people that don’t have reason to understand my plight intimately, it’s my job to learn what invisible realities they are facing and try to share in those struggles. To not be so blinded by the dangers of the world as to forget that others have children suffering even worse, more assured tragedies. That while there are loaded guns ready to end my child, there are others whose children have bullets headed there way. That there are many parents in the exact same situation as me that couldn’t stop the grip of the unknown entity that ruined their lives forever. That it is a great gift I’ve been given to be able to know for sure what I need to do to assure my child safe passage and that I shouldn’t ever take for granted how lucky I am. That if I want empathy and understanding I have to remember that the world is full of parents facing innumerable struggles, challenges and threats and it’s my responsibility to support others and seek out ways to help, just as I ask them to do for me. Compassion is not a finite resource, it is infinite and needs to be fed constantly in order for it to grow.

Sometimes the PTSD and the eminent dangers make me rude. Make me insufferable even. Sometimes I’ll need others to forgive me for that. Sometimes I have to forgive myself for that. Sometimes I have to learn from it.

What I’ve Learned

I’ve heard that there’s no style of learning more effective than experiential learning. This stands to reason. I have some experience in this area. Here are some things I’ve thought and some things I’ve learned.

I’ve thought, ‘What a freaking nuisance. You know this is just an overprotective helicopter mom and because of her, because of these two or three nut jobs I can’t make myself a damn peanut butter sandwich without breaking building ordinances. Anywhere.’

I’ve thought, ‘Don’t worry about it. We’ve got it covered. Sure, little Billy’s mama made a stink about it, but we got one of the pizza’s with soy cheese. We’re not jerks, of course we want the kid to be safe and able to have fun.’

I’ve thought, ‘This is mom’s issue. The poor kid gets stuck at the table with all the other kids he doesn’t know and has to have a special plate of crap brought out to him with his name on it. All because mom loves the attention she gets calling 13 times a day to make sure he’s not eating anything other than what is on the stupid list.’

I’ve thought, ‘Seriously, what’s the worst that could happen?’

I’ve rolled my eyes and used air quotes when explaining that a kid in my care, but not my kid, had ‘food allergies’ and gone on to explain in coded but withering judgment of said child’s mom and her hyper anxiety.

Whether it was coincidence or not it was always the moms.

Thank god, none of these misconceptions had fatal outcomes or even critical ones.

Then experience came knocking and taught me in an afternoon how mistaken I was.

Do you remember your 9/11 story? I do. For years after that terrible day anytime you were with someone you either didn’t know before or hadn’t seen since before that day the conversation always got around to your story. Your experience of that day. Still happens, just not as much as more and more ‘adults’ are not of an age to have remembered it or you’re so familiar with everyone’s tales that you reference rather then recount them.

Well, parents of kids with anaphylactic food allergies engage in the telling and retelling of their tale whenever we find someone that gets it. Unfortunately for us and our kids, parents of kids with anaphylactic food allergies are the only ones that get it. Each of us encounter the ‘me’ from above who doesn’t get it and we know they don’t get it and it can only make us act crazier. See we have to be crazy, insane, so crazy that you’d rather just bitch about me and my hyper anxiety then have to deal with my crazy wrath if any of my seemingly bizarre and self centered requests are found to have been ignored. We’ve been granted the greatest education possible through our experiences. Here’s what I’ve learned.

Many parents have a crazy period early in their first child’s life, first week or two, when they can’t stop thinking that it’s possible that the baby will stop breathing and just die. We had this bit of experiential learning ourselves and for a 10 day period after getting the kid home one of us was awake at all hours of the day and night to make sure this didn’t happen. How we’d stop it if it did is something we never even considered. Just seemed the right thing to do. Then you realize, this is crazy, if he’s gonna give us a few minutes we need to take them. You learn these fears are baseless.

Then, a year later or so, we were having our normal lunch. Then little red pin pricks around his red and watering eyes. That’s weird. Then bright red blotches all over his face and a high whistle of air trying to get in and out. Then running to the car. Then heavy vomiting as its the only way it seems to breath. Then, no breathing and beat red. Then enormous vomiting. Here’s something. Do you know where you park at the ER if your baby of 1 year of age is red and unable to breathe, turning purple and all of you and your wife and your baby are covered in vomit as he writhes to try to loosen the vice grip of the snake he feels choking him, only its not a snake, it’s his own body choking him from the inside? Where ever the f**k you want. In our case it was at the door. The car was vomit filled, and I mean covering the windows, all of them, including the windshield. By at the door, I mean they see you and guide you right to the door. You leave your car there running, doors open.

I don’t know about you, but my experience at the ER has never failed to include a stop for at least a second of triage. Not us. They see a baby, see he’s barely holding on to his precious little life and the breaths are gone, they point and TELL you, ‘RUN!!’ and you do. Your adrenaline is flooding your body and brain and you do it. You run.

2012-11-13 09.41.29When you get there you don’t care who it is. You just need someone to save your baby’s life. They do. You calm down on the outside and panic on the inside as you help your baby calm down. Eventually he’s laughing and playing and you and your wife are trying to reflect his carefree demeanor, sneaking in conversation about what the hell could it be. You won’t get answers until you see the allergist in a few days. So you empty your kitchen. Almost all of it. Because something in there can cause that silly fear you had as new parents to be a reality. Your little love can just die. It’s knowledge you carry until there is either a cure or you die. That’s it. That’s the list of all the ways you’ll come to stop worrying. You get better at living with the knowledge, but you reorder everything. Used to have a career working in the city, but since I know from all my conversations how many people think this whole ‘food allergy thing’ is being way overblown by nervous parents, I pretty much ignore that job and rest on the laurels I’d earned and after that on the sheer audacity to just show up late, leave early or not show up at all, while trying to find something that works closer to home, since you’re told that if he goes into shock the staff at the daycare’s can’t go with him, he’ll just be taken by the ambulance, terrified, waiting hours, hopefully, until we arrive. So, I take a 20,000 pay cut and take a gig, a good gig, one I love, but a step down to be sure, to be with him for the day, feet away, always ready to run. Which you’ve done once and hope to never do again.

These experiences stick with you. Forever.