I rode in an elevator with four other mothers of food allergic children on our way to a Food Allergy Initiative (FAI) luncheon a couple of weeks ago. As we rode up to the 24th floor on an unusually warm midwestern January afternoon and upon finding out that I was an allergist, one of the mothers asked me desperately, “So, what did I do wrong?” Another mother echoed her, saying, “I ate so many peanuts when I was pregnant.” And yet another mother with a sad downward gaze said quietly, “I feel so bad.” The conversation was steeped in guilt and blame. Wearing my physician hat, I held the arm of one of the mothers and told them all that they did absolutely nothing wrong, that it was not their fault that their child had food allergy. I am not certain how convincing I was however. Even though, as a physician, I whole-heartedly believe a parent cannot be blamed for pediatric disease, as a mother, I still, in every chamber of my heart, blame myself too.
During my pediatric residency I saw guilt literally destroy parents in front of my eyes – I have watched their spirits crumble, I have heard their hearts break, I have witnessed their hands wringing in pain and their lips trembling in fear. How could I have done this to my child? And it didn’t matter how many, “It’s not your fault”, that I poured over them, they didn’t believe me. They couldn’t let themselves believe me. What their child was about to endure had to be someone’s fault and it made complete sense to them that they had to own the blame. After all, we are completely responsible for the well-being of our children and so, of course, we feel equally responsible for their disease.
I have found a way to blame myself for every food allergy of each of my children. I can pinpoint the moment I did it to them. Rationally, I know that it is not my fault. Emotionally, the guilt weighs heavily on me. And on top of it, every other article that comes out feels like it is blaming me too – too clean, too little sun, no pets, not enough nuts, too many nuts, nuts too late, nuts too early… But I guess it doesn’t really matter how I did it, I have still managed to make their life so much harder for them. They can’t eat pizza. They can’t eat out at a restaurant. They have to bring their own food when they go to their friend’s house. They have to carry medications with them wherever they go. So, yeah, I feel pretty terrible about it. And because we all want our children’s lives to be easier than our own, the burden on a parent of a child with a chronic disease is heavy and perpetual.
A few years ago when my sister graduated from college, my parents threw her a party at one of our favorite restaurants downtown. I had the four kids packed in the car and my mom drove with me through the Friday afternoon traffic so she could help me get the kids into the restaurant. When we sat down, I did my standard preparations, wiping the tables and the chairs at our end, moving food and items they couldn’t have down to the other end. Just as I finished, the waiter brought the baskets of bread. My oldest son, without food allergies, swiftly grabbed up a piece of bread, warm and soft, covered it in butter and started eating it. Enter guilt, stage left. If I wouldn’t have waited so long to introduce Gino to wheat, maybe he wouldn’t have had anaphylaxis to four penne noodles and could be joining his brother in this bread indulgence. Instead, he grew impatient and hungry.
I grabbed into the food bag and found the broccoli I had prepared for Gino and Milo. I didn’t bring anything comparable to a breadbasket so they had to dig into their meal. When the appetizers arrived at the other end of the table, the twins ate their pasta and when the pasta and meatballs arrived at the other end of the table, the twins ate their rice krispie treats. I clearly did not bring enough food. They were still hungry and everyone else was still eating. When they repeatedly asked for more, I had nothing to offer. They kept asking anyway. Again, I had nothing. Nothing. On the other end of the table, everyone was celebrating and eating, and on this end, we were struggling.
Then, with unfortunately impeccable timing, Lucy vomited and no, it wasn’t just a little spit up that could be soaked up by a bib. Her outfit was sopping wet. The car seat that she was sitting in had a puddle of puke. She looked sick. She was sick. I had to get her out of there. I felt so overwhelmingly responsible for the isolation that Gino and Milo were experiencing that when the baby got sick, it was sort of a relief to be forced out of that situation. I grabbed the baby and told the twins to follow me. I left Sal there, eating. Happy and eating. On our way home, Gino was sullen. He would not speak to me, let alone look at me. He stared ahead with glassy eyes. I tried everything to get him to smile, to laugh. I begged, I bribed. He would not break. When we got home, I took him in my arms and he pushed me away. I could feel that he was blaming me. Then he spoke, “You should not have made me come home. I wouldn’t have eaten their food. I was having fun. You made a mistake mommy.” And big, juicy tears fell from his giant, brown, three-year-old eyes. You see, he was not blaming me for having food allergies. He was blaming me for ruining his fun. He doesn’t blame me for having to eat different food. He doesn’t feel angry at me for not being able to eat what everyone else is eating. He only blames me for limiting what he is able to do because of his food allergies.
I’ll never forget how I felt when that three-year old boy was able to articulate his disappointment in me. He was disappointed because I let my feelings of guilt and sadness affect him. This was the first time I took a serious look at this blame-game I was playing with myself and realized that it was not only unhealthy for me but detrimental to my son as well. What if he saw this in me and began to feel angry and resentful about his allergies? I realized at that moment that I absolutely had to stay positive. I had to keep him involved no matter how hard it was for me. I had to lead with optimism. And so, from that moment on, that is what I have tried to do. This is not to say that I never fail at this and that I don’t still have to deal with my feelings of guilt but I do try and I think it makes a difference.
We like to take the kids on “dates” so they get some alone time. Gino was going on a date with my sister last Saturday. When my sister asked him what he wanted to do, he said that he wanted to bring his own lunch and go out to eat, maybe he would be able to get chips and pop. He could’ve picked anything – a movie, the bookstore, bowling, but no, he wanted to go to a restaurant from which he could basically eat nothing. He was beside-himself excited. At school lunch, a teacher approached me and said, “Gino is an amazing child. He is so excited to go to a restaurant to eat knowing he can’t eat any food from there. He just wants to have a good time. It’s beautiful. He just doesn’t feel sorry for himself. “
He is amazing. This child heals his mother and her guilt-ridden heart every day. I have tried to see myself through his eyes and I can see that he doesn’t blame me for any of this. We must try not to blame ourselves anymore. It holds us back from being the best that we can be for them and if you aren’t able to give your kids the best of you that would be the only thing for which you could truly blame yourself. So go forward, friends. We must leave the guilt behind and stop trying to figure out what we did wrong. Then we can be free to celebrate all of the things that we do right. After all, for me, the guilt was just not getting us anywhere and my kid wants to go places – whether he has to bring his own food or not.