Thursday, May 17, 2012

A Letter to The Mom Whose Son Just Died

Dear grieving mother:

I'm not going to put your name, or your son's name, in my column. But I know there are dozens of support sites, bloggers and magazines that are doing just that today. The sad reality is that allergy deaths sell, and underneath the food allergy support community is a big money-making machine.

But I want to do what I can to apologize for my community. Because I know what you're going to find when you Google your son's name in a month, or a year, or when you've put the freshness of your grief behind you. Maybe you'll run across my column, even without a link to his name.

I'm so sorry that you'll find parents who look like they're blaming you. Oh, they'll couch it in terms like "it's just so sad they didn't get educated by their doctor or the internet." But, underneath, they're going to take apart your choices to let your child eat at a buffet, without an Epi-Pen. I know why they do it. They need to distance themselves from you, to essentially say "this could never happen to my child because I'm a better parent who makes better choices." But I know it's going to be heartbreaking for you to read their blame, and I'm sorry that you'll have to.

Keep in mind that the vast majority of these parents do not yet have teenagers. The uptick in food allergies has increased exponentially since the early '90's, so your 15-year-old was one of the oldest allergic kids. My son is 17, so I have had some experience with "but my med bag looks like a purse, Mom!" and with wanting to fit in with other kids. Peer pressure is rough. Parents who still have the illusion of control because their child is five, or nine, may not have the same opinion in a few years when their child is 15, or 17.

They also may not understand that precautions that worked can suddenly stop working during the teen years. Your son died at the height of the pollen season, at the onset of puberty. The reality is that there may have been nothing anyone could have done to stop the reaction. I read that he got at least some epinephrine    there's simply no guarantee that more would have made a difference. You won't see that posted much on the boards you read because it scares the crap out of other moms. They would much rather believe you did something wrong than to believe it could happen to anyone. But it COULD happen to anyone. I'm just so sorry it happened to you.

I am not going to post on your son's Facebook memorial page. I know you are faced with the tough choice of making the page private and having to screen for those who really knew your son and might need the chance to interact and remember him, or leaving it public and allowing anyone to post. And they WILL post. The mothers from my community will feel the need to leave their condolences. They won't take into account that there are soccer friends and community members and teachers whose posts will get lost because they overwhelm your board.

Perhaps you'll become an advocate for the food allergy community in the hope that some good can come from your child's death. Or perhaps you'll  tell us all to screw ourselves and leave you alone. Unfortunately, only the first role is going to be supported and I'm more sorry for that than I can say. Regardless of what you choose, they will use your son's name as a lesson to scare their kids, and as fodder for any parent who might stray from the path of the most rigid precautions.

Yes, it's human nature. But human nature is ugly. I'm so sorry you'll have to deal with all of this on top of your son's death. If he had died in a car crash, or from drowning, or from any of the other myriad common ways we lose teens, he would not be splashed all over the internet. I'm sorry you didn't get to choose this. I'm sorry that, even if you do choose to fight it, there's nothing you can do to control it. I'm sorry for my community. They do a lot of good, but at times like this I'm just ashamed.



To my readers: I realize a lot of you will be pissed off and say "but I didn't mean it that way" when you read this. You'll may even unsubscribe from my blog. I'm angry enough that it's worth it to me to have at least had my say. Please - have the decency to just leave this family alone and not dissect their choices. They haven't even BURIED their child yet!