Life Lessons for Both of Us

Today is Matthew’s 17th birthday and we celebrated by taking him out to dinner. For most people this would not be a big deal, but for us the fact that we can actually treat him to a restaurant meal is huge! Having a place that can safely feed him does not get old and we are so, so grateful for all the staff at Tsunami and for the care they take to make it work for him. We have spoken with the manager each time we are there, and the same server always takes great care of us. Tonight, we also met a new manager that will be working with the current one, the head chef, and the regional manager who happened to be in this evening. Apparently, Matthew is the success story they tell throughout the company as they train for allergies. They are so, so good to him and take such care in feeding him and they always seem happy to see us. They all love that they can provide a safe meal for Matthew. In fact, this evening the manager told us that he is going to put together a menu just for Matthew so that if we come in when he isn’t working, whoever is there will know exactly what menu items Matthew can eat and how to modify them to make them safe. Matthew is always grinning when we go, his whole face alight, and the manager commented on that this time, telling us that he loves to see that smile. Despite the fact that Matthew has so much going on that he forgot it was his birthday until someone mentioned it (that would have been me early this morning as he waited for his friend to pick him up for a temple appointment) dinner was a huge success and Matthew will have sushi for lunch tomorrow as well.

Once he got back from the temple, Matthew spent most of his day in rehearsals of one kind or another. The school musical opens next week, and they are nowhere near ready, so they have scheduled rehearsals on all the days off they have this weekend. Matthew is doing tech for the show rather than being in it, and pretty much rolls his eyes at how much they don’t accomplish at each rehearsal. It is festival season for the high schools as well, so he had another rehearsal with his solo and ensemble group once musical rehearsal was over. Basically, he left the house about 7:00 this morning and showed back up around 3 p.m. Most of Matthew’s birthday and Christmas presents will be band tour in April, but we did get him a Lego set that features a jazz ensemble. Jazz is the music he loves, so it is a set he has been wanting and he spent the interim between rehearsal and dinner building Lego. 

Matthew has grown up a lot in the past several years. I know it is normal for teens at this age, but for some reason it seems to be more pronounced with Matthew. People tell me all the time that he has changed so much, and although I see him every day and it doesn’t seem so pronounced to me, I know it is true. The last of Matthew’s chubby baby cheeks have melted away over the past year and with them, the last bits of his little boy look. As a toddler and little boy, I did not understand how he thought and as such, it seemed that he knew how to push every one of my irritation buttons and did so regularly. We really didn’t understand each other for many years because we are just so very different. But over the past several years, he has also learned how to communicate better and has come to trust Kevin and I, which is a huge blessing. Any time your teenager talks to you is a good day, and Matthew has gotten to the point where he talks to us regularly about the good stuff, the bad stuff, the hard stuff, pretty much all the stuff. Along with that, he has opened up emotionally and has become a hugger. He is very supportive of Malia and all her worries and is creating a relationship with her of the caliber of the ones he has with Daniel and Nathan. He still doesn’t think the same way I do, and I still struggle to understand how his brain works sometimes, but overall, the path of our relationship has smoothed a great deal as well. Matthew is an important piece of our family puzzle and I feel like he is actively working to strengthen family relationships. And I love it.

Matthew has really preferred not to make a big deal out of his birthday for years now, but after dinner (and a quick visit to his best friend who received her BYU acceptance email this evening) he did humor me and let me put a candle in the lemon meringue pie we had in lieu of birthday cake. And he even let me take pictures. And smiled. Which was something he was not prone to doing as a little guy. Seriously, he would scowl every time I tried to take his picture. And pout. I guess that is another sign that he has grown up a lot. 😂

Despite all the rough days we had when he was tiny, I’m incredibly grateful that Matthew is a part of our family. Due to his allergies and the fact that I struggled to find babysitters who didn’t freak out just thinking about watching him, he went with me pretty much everywhere. He was my little buddy and while we clashed spectacularly on a regular basis, he is also the child who reminded me how to laugh. Life gets hard when you are raising young children, have a husband who is working full time and going to school full time, must relearn how to cook so you can feed your food allergy child safely, and are trying to make your meager budget stretch to include the pricier specialty food items needed to facilitate that safe eating. So, I needed to remember to laugh. And Matthew definitely helped me do that. In fact, some of his toddler stunts are still a surefire way to bring a smile to my face. When I need a laugh, I can just pull out the blog books from that period of his life and before I know it, my spirits have been lifted.

When he was born, I had no idea what was in store for us. I had no idea that a short five months later we would be in the emergency room with him during what was his very first allergic reaction. I had no idea of the fear and anxiety that was in store for both of us as we learned to navigate the food allergy life. I had no idea that he would be much more stubborn than his older brothers and that I would struggle to figure out how to communicate with him. I also had no idea how much I would miss having him underfoot when he finally went to school. Or what an incredible example of faith and courage he would be as he dealt with the day-to-day ramifications of his food limitations. Or how much strength and light he would find in the temple and just how often he would be drawn there. Again, an amazing example. 

I find it ironic that I started my path as a parent thinking that I was the one responsible for teaching all these little humans that were sent to my family and over the years, I have ended up learning just as much from them as they learned from me. On these days when I am reminded that my children are growing up and time is passing much faster than I would like, I find myself looking back and hoping that I have done enough to give them a solid foundation in life and in the gospel. But I also find myself looking forward to what I hope is a joyful and fulfilling life ahead of them. While I know Matthew has more struggles ahead of him, I also think he has much to look forward to. And he can hardly wait to get there.

And as a sidenote, I’m still tickled that during my ongoing attempts to expand Matthew’s diet, I have learned to make a lemon meringue pie with nary an egg in sight. And it is one of Matthew’s favorite kinds of pie. 😉

A Very Important First, But Hopefully Not a Last

For most people, taking the family out to dinner is a simple thing. For us, not so much. It always involves advanced planning, prepping a meal for at least one of my children, and then the emotional toll that occurs when the effected child or children have to watch the rest of us eat something that looks and smells delicious. As you can imagine, we don’t eat out all that much. Even on vacation we have tried to keep eating out at a minimum to help ease that feeling of being left out at the table. So, I’m sure you can imagine what a landmark event our first ever restaurant meal where all six of us were in attendance and were all able to eat was destined to be. We have been planning this meal ever since Matthew’s successful outing to Tsunami in October, and honestly, I think this was the most important event of this holiday season for all of us.

We started off our day with a trip to the temple. Over the past year, it has kind of become our routine to try to schedule a temple trip when Daniel and Nathan are home for a few days. It has been so nice to be able to attend together and it something I suspect we will continue to do. After lunch we drove downtown to take our yearly family pictures. With two kids away at school, scheduling a photo op for all of us has been a challenge. We had originally planned to drive to Logan in October, but work and marching band foiled that plan. We tried again over Thanksgiving weekend, but once again work schedules were tricky to navigate. Everyone has days off work and school this week, so we took advantage of the day to snap a few pics. Kevin and I know that the times when we can get all our kids together for a family photo are only going to become more difficult to arrange as time goes by, so this one kind of feels like the end of an era. Moving forward, we plan to take pictures with Matthew and Malia whenever it works for the four of us and invite the older boys to be in attendance if they can. If not, we totally understand. And encourage their continued foray into adulthood. 

Dinner at Tsunami was the culmination of our day of family outings. We all ate sushi, even Matthew who had his own specially prepared allergen free rolls, and Malia, who has gotten a lot braver about trying things and even liked some of the rolls she tried…minus the fish. 😂 We talked, we laughed, we ate way too much, and we had an absolutely amazing time. This was another remarkable first, one we never thought we would have. And hopefully, there will be more meals, and days, like this in the future. I suspect there will be. We all value family time and while we can’t always make it work, that will make the times when we can even more special.

As time goes by, I am becoming ever more aware of just how precious these family times are. Daniel and Nathan have only a few days at home as they both need to get back to work and honestly, my home is not their home anymore. When they are here, they are only visiting. We all know that. And we are all okay with that. I have raised my children to become capable, independent adults, and I’m not going to mourn the fact that my efforts have been successful. I will just enjoy the times when they are here, take advantage of these fleeting moments when we are all together, and continue to support and love them in the ever-changing ways that having adult children brings. Having said that, I do reserve the right to feel just a little bit sad when they leave to return to their home and their lives. It’s a right that twenty-three years of motherhood has earned me. But I won’t wallow in it. I’ll let that bit of sorrow prick my heart, then I’ll jump right back into the continuing task of raising my younger children. I’m not done with this whole mothering gig yet!

Oh, and as a sidenote, apparently Matthew is still the poster child for food allergies. When he was four or five, our allergist mentioned that she had a medical student in the office and asked if he could come in for our appointment. I agreed. When our doc brought the student in, she told him, “This is an example of a highly allergic individual.” That was our first experience with Matthew being the face of food allergies. The manager on shift at Tsunami was the same manager we met last time, and the same manager Kevin talked to on his first Q and A visit when we were trying to find out if Matthew safely eating there was even a possibility. The manager asked Kevin if the owner of the chain had gotten in touch with him yet. He had not, but the manager said that Matthew’s successful visit was used as a refresher course on food allergy protocols for all the locations and that the owner had asked for Kev’s phone number. I have to admit that cooking for someone with so many allergies can be quite daunting and getting it right in a commercial kitchen is a huge accomplishment. As such, I’m perfectly fine with the fact that once again Matthew seems to be the poster child for food allergies!

Leftovers Have Never Tasted Better!

With the fear and anxiety of last night’s maiden voyage into the arena of restaurant dining behind him, Matthew ate his leftovers with gusto. He’s not usually a huge fan of leftovers with the exception of a few of his favorite dishes over which he will fight you (or more likely, Malia) to the death, but lunch today found him happily consuming the remains of last night’s Tsunami feast. While enjoying his food, he commented that it was so good and that we will have to go again. And I can tell you right now, that is totally going to happen. 

Firsts and Reverses

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.