There are a lot of ups and downs with food allergy kids in the family. That may seem strange to you to think about the fact that there are positives to a situation that seems entirely negative, but there are in fact good moments. Often the “firsts” are the things that keep us hopeful about the whole thing. For example, Matthew’s first ever chocolate chip cookie at the age of two when allergen free chocolate chips finally became a thing. His first chocolate coated ice cream bar, dairy free of course. His first school lunch, prepared especially for him by the amazing cafeteria lady at his elementary school. His first coconut whipped cream. His first chocolate candy bar. His first M&M copycat. His first white chocolate chip cookie. His first waffle with eggs in it. His first sunbutter cup (like peanut butter cups but with sunflower seed butter). His first allergen free brownie when I finally figured out how to make them egg free and high altitude. These are the good days, the days when foods are added to his diet, the days when he feels just a little bit more like a normal kid.
Of course, the flip side is the reverses. The loss of the chocolate coated ice cream bars as part of the loss of Matthew’s favorite brand of non-dairy ice cream when they added pea protein to the entire line. The loss of peas themselves, which he liked, before he became allergic to them. The loss of the M&M copycat when chickpea cross contact became an issue. The loss of the egg waffles after having some intense and unpleasant reactions a few hours after eating. (We’re still trying to figure that one out. His testing showed nothing has changed egg wise and we are back to waffles with just the egg yolks instead of the whole egg.) The loss of the Western Family brand of fudge stripe cookies when they added milk back to the recipe. And of course, the loss of the normalcy of being able to eat out with family and friends, take a date out to dinner, etc. Malia has had many losses as well such as the loss of her favorite chicken noodle soup when she could no longer safely eat at Kneader’s. The loss of Panda Express as an option for her. The loss of Carl’s Jr., her favorite restaurant, when they added a vegan meat option that had so much pea protein in it that people with peanut allergies were having reactions. The loss of the freedom to eat cake and ice cream at a birthday party. The loss of the ability to have a bakery made anything, a doughnut shop treat, and many more things we all take for granted as just a normal part of life. And more than anything else, the loss of the ability to eat without stress, to enjoy a meal without wondering if you are going to have a bad reaction, to just eat without having to think about the fact that one bite of the wrong thing can kill you.
These are the reverses and as you can plainly see, the reverses are more plentiful than the firsts. But in my opinion, that makes the firsts even more important. Like I said before, the firsts are the things that keep up hopeful, that help us continue to move forward.
This evening we had a first. And it was a big one. A few months back, we went out to eat at Tsunami, one of our favorite sushi places. It is a completely nut free establishment which is an added perk to the fabulous food because it means Malia can eat safely. Matthew had his own food, of course, and we mentioned his severe allergies to the server like we always do. Our server that evening said that she was sure they could feed Matthew safely even with his long list of dangerous foods. If I remember correctly, she even had a manager come and chat with us for a minute. All that got us thinking that maybe, just maybe, eating out might be a possibility for Matthew.
As I’m sure you can imagine, the idea of eating in a restaurant is terrifying for Matthew. Having his food prepared by complete strangers in a kitchen that is preparing items that are not safe for him and thus having no control over what goes into his food creates a lot of anxiety. Although Kevin and I were excited about the possibility of him being able to eat with us, we knew it had to be something he was ready to try, so we didn’t push. We figured that if he got to a point where he was ready, we would do the additional research necessary to ensure as safe an experience as possible and leave the timing up to him.
About a month ago, Matthew told us he wanted to try Tsunami over fall break. He is in the middle of marching band season which means lots of meals away from home during camps and competitions, and I think the tipping point was all those meals with the band and the sense of being different that not being able to participate in a meal with others gives him. On several occasions he came home and commented on how good the meals smelled and how he wished so much that he could just be normal. He was finally ready to try.
A couple of weeks ago, Kevin headed over to Tsunami during a slow time of day and talked to the manager as well as the regional chef who just happened to be in the restaurant that day. Their discussion reassured all of us that they could, in fact, feed Matthew safely. They would need about 30 minutes to clean a prep area in the kitchen but other than that, they were confident. So, a reservation was made for a day and time that would be a bit slower for them. Copious notes were included in the reservation so the kitchen and serve staff would be ready for us, and they were definitely ready. When we walked in the door this evening, they had a table spotlessly clean and right next to the kitchen door so they could easily ask questions as needed. Our server knew exactly which allergens Matthew needed to avoid and had all the possible substitutions ready for us as Matthew made his selections. Their menu is such that the only allergens of Matthew’s that they have in the kitchen are milk and egg, so that simplified matters. They had already set aside and cleaned a prep area in the kitchen because it was literally only about five minutes after ordering when the first dishes were placed on the table.
Matthew looked terrified, as well he should. To be honest, I was nervous too and had been praying all week that things would go well, that he would not react, that this experience would be a good one and perhaps open a few more doors for him and allow him a chance to feel just a bit more normal. After a couple of deep breaths, he grabbed his chopsticks and picked up the first bite. For most of us, one bite is not a big deal. Eating is something we do every day, without giving it much thought beyond whether or not it tastes good. For Matthew, he takes his own life in his hands every time he eats because just one bite of the wrong thing could kill him. And he knows that. So maybe that will give you an idea of just how much courage and faith that first bite took. It was probably the most terrifying bite he has ever taken. And I cannot express how proud I am of him for having the courage to take it.
So, Matthew took that first bite and then he paused. Kevin was sitting directly across from him and was constantly reassuring Matthew that he could do this. They locked eyes and Matthew popped that first bite in, chewed and swallowed. Kevin grabbed his hand and held it while we all waited. When Matthew has reacted in the past, he has done so quickly. His allergies are severe enough that within a couple of minutes he knows things have gone awry. So that first bite and the five minutes he sat there afterwards were to see if he was going to react and to give him a chance to get his anxiety under control. Blessedly, he did not react. And once that first hurdle was cleared, the second bite was for flavor.
I’d be lying if I said that Matthew was completely relaxed for this meal. He was actually really stressed but the food was good, and he did enjoy it. He tried a variety of different things and honestly, we had to kind of keep ourselves under control because there are so many delicious dishes we wanted him to experience but we also didn’t want to overwhelm him. So, we directed him towards a few things that we thought he would like and he did like everything he tried. Honestly, I kind of wondered if he would be disappointed by the quality of the food that we’ve been hyping up ever since we discovered Tsunami, but he was not.
Our server checked in often to make sure all was going well and was well educated and able to answer all our questions. The manager on duty tonight was the same one Kevin talked to several weeks ago and he stopped by to see how things were going. He was really pleased that he was working when we came in and was pleased as well that things went smoothly. We learned that the owner of Tsunami has a son with a severe peanut allergy which explains why they are peanut free and why, in my opinion, they are well educated in how to make things safe for allergy folks. Sometimes it takes living the life to really understand all the ins and outs. Overall, the staff was amazing. They did everything just right and needless to say, we tipped them accordingly.
We asked Matthew about five million times how he felt, physically and emotionally, and throughout the meal he continued to be reaction free. As we finished up our meal with no adverse effects, we began to spread the news of Matthew’s experience and I think Nathan’s response was my favorite:
Both Daniel and Nathan were surprised and so, so pleased! This is a big event for our little clan and plans are already in the works to visit Tsunami again when both Daniel and Nathan can join us. It will be the first time ever that all six of us will be able to eat a restaurant meal together. And that is huge for us, Matthew especially.
As we headed home, leftovers in hand, Matthew’s stress level began to come down some. And as the evening wore on with no delayed reaction either, his joy about the experience began to grow. This was a life altering first for him. This means there is someplace he can take a date for dinner. There is now an option for a meal we can all enjoy for special occasions. This is something that might be small and simple for most of us but is a huge step forward for a kid who has never known such normalcy where food is concerned. This is a little bit of hope all wrapped up in what has been an amazing first.
