PISSED OFF

Oh my Gosh, I don't remember the last time I felt this pissed off and so angry and so heartbroken. I rarely let my mask come down in front of my kids, yet this one got control of me.

The only time Josh ever saw me get choked up was saying good-bye at the airport before he left for the year. Until now that was the hardest thing I ever had to do as a parent.

The only time Mikey ever saw me get choked up was yesterday hours before Simchat Torah was to begin.

Every Simchat Torah is nerve-wracking because so many unsafe candies are passed out during hakafot and it's a minefield to an allergic child. For a couple of years after Coby was diagnosed I stayed home with him on Simchat Torah. Then the next couple of years we took him to shul for a couple of hakafot but kept him up on Yitz' shoulders with a safe candy in each of his hands as I saw all the butterfingers, reeses peanut butter cups, take 5s, snickers etc. being passed around, watching the children rip it open, shove it in their mouths, chocolate melting on their fingertips. My imagination went wild thinking about all the things these children were now touching that can cause a problem if Coby were to touch it--- the benches, the door knobs, the flushers, the water fountain, the Torahs etc. I kept my eyes peeled on my kid, epipens in a bag right next to me, phone in our pocket, just in case...

Beginning last year Coby no longer wanted to leave after just two hakafot, he wanted to stay the entire time. But last year there was also a section of our shul's bulletin that reminded people that there are children with allergies in shul and to please keep that in mind when they decided what candies to bring to shul to give out to the kids. I still saw a few peanutty chocolates being passed around, but much less than the year before. Coby knew not to eat anything without checking with me or Yitz first (but to say thank you when an adult gave it to him) and not to touch his face (if he touched something with peanut residue and then wiped his eye or mouth or nose with that hand it can bring on a full anaphylactic reaction.... if he simply touched an area with peanut residue without touching his face his reaction would probably just end with hives).

This year in this week's shul bulletin in big bold letters taking up an entire half page was that same reminder. It meant so much to me that people were looking out for Coby. There are very nice people in our shul who always make a point to find safe candies for Coby on Simchat Torah, pack only safe shalach manot for us, make the children hakafot that take place earlier in the afternoon completely safe for Coby. And a simple 'thank you' is not enough to convey how much that means to us.

So what happened this Simchat Torah?

Monday afternoon after shul, Mikey came home from shul and told me he had something to tell me but that I was going to get upset. I braced myself and said, "tell me." He said that there was one particular adult having a conversation with a few of the shul's kids telling them, "If you are upset about the candies and chocolates being given out this year then blame it on Coby. It's because of him that we're not supposed to bring the good stuff."

Mikey tried to defend Coby saying 'it's not only Coby, there is another child in shul with a nut allergy.' That adult said, 'well that kid's allergy isn't so bad.' (turned out there was also another child visiting for this yom tov who also carries an epipen due to a nut allergy)

Mikey, "Do you know that 1 in every 13 kids has a nut allergy?"
Him, "In our shul it's basically just Coby & an entire shul should not have to do all this for just one person. I had to go through the big bag of chocolates I had bought and pull out the chocolates that have peanuts and I can't bring them to shul tonight."
Mikey, "Do you know he can die if he eats one?"

Him, "Still an entire shul should not have to do something for just one kid."

When Mikey told me this, I felt primal. I felt so filled with rage. I was literally shaking and my heart was pounding. I was ready to rip into this guy. I was ready to get up on shul bima and have it out with the entire place. Because of this one guy, I was getting so pissed at the entire congregation wondering why our shul is not always peanut free every single shabbos & kiddush the way the other shuls are. (Again taking a step back I can understand that most people may care about Coby and don't mind making small accommodations but it takes just one drop of venom to spread to and ruin the entire cup)

And it was all because this one guy opened his mouth to other kids. HOW DARE HE. Not only was this not a private conversation between this person and someone in our family; he was involving other kids in our shul and telling them to blame my Coby. I know some of the kids this man was talking to tend to 'share' things with other kids and I pictured these few children quickly complaining to all the others blaming Coby for the night.

Mikey told me to calm down as I tried to talk to him without my voice shaking. I mean, I knew in life there would be strangers that don't give a damn. I read about that person who refused not to eat nuts on a flight, ignoring the announcement, and causing a child to go into anaphylaxis. But a person who knew Coby for his entire life?! A person who knew my family for over 15 years?! We are not very close with this person (not even facebook friends) but we've had his child in our house several times and taken his child with us on outings as well. If he felt a bit pissed off, fine.... But then to spread the venom amongst the kids?!

I completely lost my appetite. I couldn't eat lunch that day (even though it was dairy and me, being the vegetarian look forward to the yom tov milchig meals). (Mikey tried to feed me some of the penne a la vodka, cute kid.)

This was my first experience with food allergy BULLYING. I read it will happen to 1 out of every 3 children with allergies. I know at times the bullying even becomes physically dangerous when kids get smeared with their allergen. I know that some children who are continually bullied are at risk for suicide. I was looking at my adorable sweet kind hearted 8 year old and my heart was breaking.

And I knew that if I can't even count on someone who has known Coby his entire life to be okay forfeiting his candy with peanuts for a total of 90 minutes to help keep my kid ALIVE and INCLUDED then what shot did Coby have in the real world? And this solidified my resolve that we MUST DO OIT.... We have to do whatever we can to protect our child!

We arrived at shul that night, and I felt like an impostor. I felt like my child and I were not wanted. Anytime anyone glanced my way, I felt like they were saying YOU RUIN EVERYTHING- WE DONT WANT YOU HERE- GET OUT! Chances are most of them weren't thinking anything of that sort, but I felt shattered. 

Candies were passed around- many were not safe for Coby. BUT not a single candy with an actual peanut was given out this year. (first time ever). So while Coby still could not eat most of the chocolate candies that were handed out, people made sure he had ample candy that was safe for him. And we didn't have to fear a touch or airborne reaction. When he danced with his friends holding their hands I didn't have to hold my breath as he then swiped at his nose. I didn't have to worry when Coby leaned over to kiss the torah that a person who had just eaten a snickers bar may have just kissed that same Torah. He was safer than he ever was! (Though did get quite upset on Simchat Torah day when he couldn't have a gooey type of candy (not chocolate) that had a 'may contain' label on it, on a whole he had a blast.)

But we didn't want to rain on everyone's parade- there was plenty of candy- dots, licorice, ring pops, wax lips, taffy, lollipops, m & ms, whoppers, heath bars, 100 grands, milky ways. We don't want to take away the kid's candies, we just want Coby to be 'safe enough' to be included.

Why was it necessary for this man to complain to the kids telling them to blame Coby that they wouldn't be getting their reeses pieces this year? Eat it at home the other 22.5 hours a day, and let my kid dance and be happy and live!

While he was physically safer than he ever was this year, I never felt like such a burden and so unwanted based on what this one person did.

*Yitz did approach this man before hakafot began and the guy tried to say 'i was only joking'.... 'it was a conversation just between me & Mikey' (not true)... 'I know it's not just coby b/c another child has an allergy too so why would i blame him' (when we know that when mikey pointed it out he dismissed the other child as not having a full allergy and turned it back on coby) He did tell Yitz that he's sorry & wouldn't do it again, but who the hell knows? And once you involve others it's too little too late.

All I know is that if someone who's known him all his life feels this way AND vocalizes it to others then what are Coby's chances?

Mikey also told me he tried to tell the guy 'we are trying to do OIT with Coby' and the man responded, 'so maybe in a few years we can get our candies back.'

Though now I have another dilemma.... I read that children on maintenance dosages can still go into anaphylaxis and at times it's brought upon by 'exercise' soon after eating their dose. So while I told Coby 'maybe a Simchat Torah in the future you won't have to worry about this and you can eat what you want'---- that would mean Coby wouldn't be able to do the dancing he had so much fun doing this year... Sigh. At least I wouldn't have to worry about Coby having an airborne or touch reaction to the peanuts that this guy and others members of the shul may want to get back into circulation.

Again, there are several people in our shul who go out of their way for us to help keep Coby safe and some reached out to wish us luck with our upcoming journey telling us we have their support and that means the world to us. Thank you to those sweet souls from the bottom of our hearts.