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!


  1. Well done. I hope someday, that child's mom reads this. Thank you.

  2. Yes. What she said. You always articulate what I'm thinking in such the perfect way.

  3. Good for you! So beautifully written with great compassion. Thank you for this.

  4. I do agree that it is important to be very compassionate to this young man's family. My heart breaks for them. That is about the extent to which we agree on this issue. Once again I think your advice could lead to future food allergy fatalities. Patting people on the head and saying, 'there is nothing you could have done' is a disservice to those who are still alive with food allergies. The epi pen does not always work, even when given promptly but it usually does. It's track record for those who get the epi pen within at least 20-30 minutes of the start of a reaction is very good. Most deaths happen when the epi is delayed. Having gotten a child's dose instead of an adult dose (or two as many people need two or even more doses) also could certainly have not been enough. But also this child ate a nut-containing cookie with a known peanut allergy.

    My child is not yet a teen and I hope that he will always carry his epi pens and not eat high risk food and I can't know what he will do. I can only educate him and hope.

    There is a big group of people who do NOT get told to avoid buffets or baked goods when one has a food allergy or to carry their epis. I was told Benadryl can stop ana by an allergist and this isn't so! I was told I didn't need epi pens. I was not told how to avoid allergens or to avoid baked goods. I'm not alone. I would bet there is a good chance this mother wasn't told, either. And that IS a problem. And your thinking will COMPOUND the problem. This type of thinking can lead to further needless deaths. Well, don't tell someone they should carry epi pens because you might *offend* them. Don't tell people not to eat high risk food in high risk places because you might offend them. They have a different 'comfort zone'. I just won't ever agree with you on this.

    My heart breaks for this family and I want to help prevent this happening to others families. People have used the deaths of others to food allergic reactions in order to protect themselves and their children and I think this is something those who die would have wanted done for them! I can't imagine how many deaths Sabrina Shannon's mother has prevented but I am sure she has prevented some and also prevented many a reaction and unnecessary suffering. My own child may be included in that as her story deeply touched me and let me know that some things I was doing were not safe. She changed how we handle my son's food allergies. I think of her on occasion and have since I first heard her story 8 years ago, always with compassion, care and love and with a partly broken heart for her great loss.

    Please don't advocate for LESS safety. That is what I see as a trend in some of your posts. Still think this blog is great but I can't agree. Sorry.

  5. GardenGirl, I am NOT advocating for delaying an Epi-Pen! But you are essentially saying that you think the right to exploit the memory of dead children automatically trumps the wish their parents may have for privacy.
    I obviously think this is horrible.

    Sabrina Shannon's mom has chosen the advocacy route, and I honor her for it. Surely there are enough parents like her with dead children whose stories you can use (and I don't use the word "use" without thought), that you don't need to dissect on chat boards every single death that happens, right after it happens.

    I do not "advocate for less safety" as you put it. But I do advocate for *balance*. I will not judge other families for making decisions that work for them. We all take risks in every part of our life, every day, and food allergies are just one more risk.

    Your child takes a substantial risk every time you put him/her in the car to go to the supermarket, yet I won't condemn you if you accidently run a red light and he/she dies. That would be BEYOND heartless. I also won't post about you afterward on public chat boards and tell strangers how sad I think it is that you didn't get driving lessons. Why do we think this is normal with food allergies?

    As I've said many, many times in the past, anxiety disorders are a terrible way to go through life. This behavior - continually talking about deaths to ramp up anxiety - is pathological. If scaring our kids into compliance actually *worked*, I might feel differently. But it doesn't work. It just gives mothers an outlet for their anxiety, at the expense of these families who didn't choose to be internet fodder.

    I ask you: could you stand in front of this grieving mother and say to her face "sorry you might want your son's death to be private, but I need to use it for my own purposes, so tough."

  6. Telling people who didn't carry epi pens, who let a peanut allergy chid eat bakery cookies containing nuts from a buffet that there was nothing they could do could easily lead others to think this is just random stuff and that preventative measures don't count or matter. A newbie who reads this will come away confused and with less than optimal information. I would not write to the parents and say, "you should have" or "you should not have" but I would absolutely say so to a family friend or relative or school official or whoever in order to get them to keep my child safe.

    I think the traffic analogy would be more like if I put my child in the car with no car seat and no seat belt and was drunk. That would be a better analogy. What this child did was not an accident. He didn't carry epis and ate very high risk foods. That is a fact. Ignoring that could lead to others doing the same. The word should get spread that that behavior isn't safe.

    I am not talking with this mother. My heart breaks for that family. I would not say a word to her about what she should have, would have, could have done. That's not my business. That isn't what I have done.

    The other day someone wanted to feed my child something from a bakery and I was trying to explain why this wasn't safe. He wasn't understanding. He has put my child at risk in the past and my son actually had anaphylaxis as a result. I did use this example. I said, "it isn't safe. Very unfortunately a young man just died from eating a cookie that didn't have peanuts but was from a bakery. I can't take any chances." This seemed to get through to him finally even though I have talked with him previously. Is this exploitive on my part of part of protecting my son so he doesn't end up at the ER *again* from this other person not understanding food allergies?

    I see that you are advocating for less safe conditions in your various posts. You do not want to offend anyone to the extent that you won't call not carrying epi pens and eating very high risk foods dangerous because it might offend someone. I do not agree. Those are not safe things. I'm not being OCD to say so. Any allergist would say the same. Those are BASICS. Are you upset that people also advocate for using bike helmets and wearing seat belts and using car seats, etc? To me it is the same type of thing.

  7. Gardengirl, you're reading things into my posts that are just not there! I have never said people should stop carrying Epi-Pens, or that they should eat high-risk foods.

    This post was about naming this child and critiquing this mother's choices in chat forums and other public internet venues. It is NOT necessary to do that.

    What you want me to say - that every parent should have the same comfort zone - is something I just will not say. Every parent should work with their allergist to develop solutions. Risk is risk. You discount the risk of driving because it seems so commonplace to you, but a million children a year worldwide die in car accidents. If your measure of negligence is ANY risk of death, then any parent who drives their child is far more negligent.

    Our *perspective* is what makes one risk look allowable and the other look untenable. You would probably think nothing of that same cookie-giving father bringing your child home in the car from Little League. I'm not saying you should allow the cookie! I'm saying you should question why you're so afraid of one activity, but so unafraid of the other, when the driving is actually more dangerous.

    I want people to carry Epi-Pens and avoid potentially-contaminated cookies. I just don't want them to be *phobic* about it.

  8. I also feel you are seeing things in my posts that are not there as well. It is possible that we are not understanding each other very well at all. I think if the FA community NEVER talks about food allergy fatalities it really ties our hands when it comes to explaining why we need accommodations for our children in schools, etc. It would make advocacy much harder.

    I certainly can see that there could be people who step over the line and interfere with a grieving family and that would be very disgusting behavior.

    I do not want you to say that every parent should have the same comfort zone. But sending a child to play on the highway is not a comfort zone. Putting a child who should be in a car seat unbuckled into the front seat isn't comfort zone. Eating foods that are very high risk and not carrying epi isn't just comfort zone. It is either someone who lacked proper information or someone who is is practicing very risky behavior. Passing of recklessness as 'comfort zone' is in a way saying that such behavior is reasonable and fine. I would bet quite a bit that this child and his mother had doctors who did not do their job at explaining the gravity of the situation and the way to manage FAs. I bet they did not realize that bakery products were such a high risk food. I would say there is a very good chance that is the case. And if so they are very much victims of medical system that isn't doing enough to educate people about FAs. most pediatricians do not know enough to properly advise those with FAs and even some allergists.

    Risk is risk. That doesn't mean that we should send our kids out in traffic. It is a risk to drive our car. I take precautions and forget about it meaning I don't worry as I drive *in just the same way* as I take food precautions and other precautions at parties, at restaurants, at home and *I forget about it* meaning I have done what I can and then I don't worry about it. I don't think the fact that there is risk means we start thinking, 'there is nothing that can be done anyway.' That's an extreme in my opinion.

    People around here have to drive. We do not HAVE to eat bakery cookies when we have a known ana allergy to something frequently in bakery cookies such as nuts or peanuts. That is the difference. You are equating things that are not equal.

    My measure of negligence, and I would not say this family was negligent since I think it is likely their doctors failed them because they themselves were not properly educated on food allergies, would be knowing that bakery cookies can literally kill you and eating them anyway, knowing that epis given promptly are the key to surviving the very worst ana and not carrying them and eating high risk food. Those things are negligent.

    People sometimes are negligent. People sometimes do things that are not safe. Calling things that are clearly very unsafe 'comfort zone' isn't something that ever felt right to me.

  9. yes, if a person knows all the risks and truly understands and chooses to engage in high risk behavior that would be comfort zone but in all cases I know these people have some incorrect ideas in their heads. The person I know who uses his tongue to check for allergens in foods and doesn't carry epi pens has incorrect info in his head. The guy I know who thinks looking at food to tell if it has peanuts in it or not is always going to work and doesn't carry epi pens also lacks correct info. They both think that what they are doing is always going to work because it has so far. I hope they are right but I know they could be very wrong unfortunately. Both have doctors who have NOT educated them on this and who have told them very incorrect things. So, in their case I can't say, 'comfort zone' alone.

    When I fed my son a bakery cookie it wasn't out of comfort zone. It was out of lack of knowledge.

    I'm not 'so afraid' of bakery cakes vs driving in the car. There is NO REASON to risk giving my son a food that is very high risk. There IS a reason to drive in a car. We do not live where we can walk to almost anything.

    I'm not "phobic" about it. I recognize there is risk and I do what I can to cut down the risk in my life and then live my life. What else can we do? Doesn't mean I'm going to give a hang gun to a baby since there is risk out there.

    I do not think we will agree and I think you and I veered off from one another's thinking at a very basic level and are not going in the same direction on this general topic.

    Best wishes.

  10. Well said @Food allergy Bitch!! It's a time for compassion, not blame.....Some people can't wrap there head around that, because there are NO guarentee with food allergies...What's good for one,is not the same for another...I'ts easier for them to pass judgement and believe there choice is the right choice than to except that there is NO perfect safety net, we can only just do the best we can......

  11. I haven't read the whole back and forth between FAB and Gardengirl, but I think I got the gist of the argument from the few couple of exchanges. And I have to say, I gotta go with Gardengirl on this one.

    As the mom of a kid who has had an "8" reaction -- from your other post/poll -- I think it is very helpful to discuss these deadly reactions on our food allergy support boards. I know I read these stories very carefully to make mental notes of risks I hadn't thought about before. Or notes to self of types of things that teenagers are likely to do and how I might teach DS not to take certain risks in the future.


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