Kristine Lukanich

@kristine-lukanich | contributor
Kristine Lukanich is a wife of eleven years and mommy to five little kids who just happened to have been born in five different states! She’s a parent advocate for food protein-induced enterocolitis syndrome (FPIES) awareness. She tries each day to embrace the chaos and live a life of love. Her instagram is "theslightlysaltykids".

A Letter to the Parents of a Child With FPIES

To the parent of a child with FPIES (food protein-induced enterocolitis syndrome), I think about you, and pray for you daily. I see you. I feel your frustrations. My heart truly aches for you. Today your child may accidentally eat something they can’t have. They may vomit so much you have to rush to the hospital. And it will scare you more than anything in the world. But you will get through it. Today your child may ask for a food others are eating and you will have to say no. There will be tears. Your heart will break in a million pieces. But one day soon, your child’s comprehension and maturity will amaze you. Today you may feel like you have neglected your other children because you are constantly dealing with doctor appointments for your FPIES baby. But you will see how FPIES gives your other children empathy that they would have never had without FPIES. At a young age, they have learned to embrace differences. And for that, you are grateful. Today your marriage may struggle. You may not agree on food trials or doctors. You may struggle with finances because you need to buy special formula. You may find that all you talk about is how to heal your child’s gut. It is consuming and draining. But you will find that your spouse is the only other person who truly knows what it’s like to walk these shoes. You will learn to cling to each other, support one another, and your marriage will grow deeper and stronger. Today, your extended family or friends may think you are being extreme, or they may give you the most ridiculous advice. You will shut down. You will shut people out. And that’s OK. One day you will see that most of them had the best of intentions, and one day they will realize that you were always trying to do what was best for your child. Forgiveness will heal those aches. Today you may have someone call you a bad parent because your child is eating potato chips for breakfast – solely potato chips — because it’s one of three foods that he can actually eat. You will be hurt, angry, and frustrated for being criticized. But you will learn to look at others differently. You will learn to never judge other parents when you do not know their situation. Today you may be on a restricted diet yourself because your child reacts to your breast milk. You will get angry that you cannot eat many foods, but then you will look at your child’s sweet face and you will feel a part of motherhood that you have never felt before. This will give you strength to go on. Today you may call the insurance company to beg for them to cover your child’s elemental formula. You will cry to this lady and tell her how unfair it is that your child cannot eat any food or drink regular formula. You will tell her how you cannot afford to pay for this extremely expensive formula every week. Your begging and crying won’t change the answer. But because of the insurance denial, you will have loving doctors give you bags full of free sample cans. You will experience a kindness you never knew existed when complete strangers send the formula when you needed it most. Today you may feel like you are the only one going through this. You will feel so alone. But you will soon find that social media can be a good thing, and you will join a small community of other FPIES parents for advice and comfort. Complete strangers you have never met will not only become your friends, but your lifeline when it comes to anything FPIES. Today you may sweep your floor 40 times to make sure there isn’t a single crumb your child can pick up and eat because just one crumb can send them to the ER. Today you may feel like you are drowning in tears because your child is falling off the growth chart and you have no idea how to provide nourishment. Today you may pack a homemade dinner for your child to bring to a restaurant because they cannot eat out. Today you may make two different dinners and your child’s dinner will have to be specially prepared in their own uncontaminated dishes. Today you may watch them have to turn down another treat after a soccer game because it’s not safe. Today you may feel like you are losing your mind. And you will feel this way over and over again for the next few years. That is OK. Give yourself grace. Before you know it, this FPIES life will become habit. You will struggle. You will cry. You will wonder if your child will ever eat food, ever have a real birthday cake, or enjoy a slice of pizza. But you will find strength. You will feel empathy for others you have never felt before. You will watch your child overcome adversity with perseverance and grace. Your family will become closer. You will become an educator and an advocate. You will all be stronger, kinder, braver, more patient, and more sympathetic. You see, FPIES will change you, and it changes you for the better. So hang in there my friend, you will get through this. You are doing an amazing job. We want to hear your story. Become a Mighty contributor here . Getty Images photo via -slav-

Parenting a Child With Food Protein-Induced Enterocolitis

I used to think most allergies were a joke. I used to cringe when people wouldn’t let their kids eat something because they got a little rash around their mouth, a few patches of eczema, or a stomachache. I would think, just give it to them and their body will get used to it or stop babying them so much. I just didn’t get it. I thought it was a huge inconvenience for everyone else around them. Horrible, right? It’s kind of like how before someone has kids, they can be quick to judge. I was the mom who easily judged others, and now I have become that “allergy mom.” I am the mom to a young boy who has food protein-induced enterocolitis syndrome (FPIES). He is a 2 and a half year old who can only eat 20 foods. I am the mom whose kid will not be able to eat most snacks other kids bring to school. I am the mom who freaks out when another kid spills Goldfish crackers all over the playground. The mom who dreads going to any social gathering with food. I am the mom whose child can’t eat at most restaurants. The mom who has to bring her son’s safe food everywhere we go. I am the mom whose child is the reason other kids will have to bring fresh fruit or store-bought snacks to school that have all the ingredients listed. And the other parents – they don’t get it. They don’t understand, and people might start to think that anything to do with my child’s allergies is a hassle. Until one day, you are the “allergy mom.” And just like that, life changes. You start to see from different eyes. I am that mom whose kid will go trick-or-treating with his brothers and sisters and not be able to eat the candy. There may be tears, and there may be tantrums. And we will get a lot of looks. Very few will understand and most will think it’s an annoyance to have a different treat option for those kids who can’t eat candy. So I ask anyone that is giving out candy this year, and in the years to follow, to consider having a non-food treat for kids with allergies or intolerances and be a part of the Teal Pumpkin Project. A small amount of kindness and empathy towards kids with allergies means more than you will ever know. We know we can “just keep him home” and not allow him to trick-or-treat with his siblings. We don’t expect the world to bend over backwards for him, but we do believe in kindness and empathy. We have a passion for all kids with allergies to enjoy Halloween just like every other child. It is my wish this year, that thousands of children with allergies all over the nation can find a few houses that make them smile. Please join the Teal Pumpkin Project and make your home on the other end of that smile.

Letter to Teachers of Kids With and Without Special Needs

Dear Teachers, I know you aren’t ready for the summer to be over — neither are we. I know you aren’t ready for new kids to enter your doors, new challenges, new personalities, new disabilities, and new routines. I know you get pressured to teach to the standardized tests and make sure all your students are up to par. I want you to know that as a parent of five children, it is very important for our children to learn, grow, and thrive academically.  We want them challenged. We want you to push them and make them think out of the box. But it doesn’t come down to standardized tests for us. Because you know what? We want more. We want them to be taught to be kind, courageous, compassionate, and respectful human beings. We want them to address you as ma’am or sir. We want them to put others first. To win and lose gracefully. To be humble. To work harder when they fail. To never give up. To stay positive. We want them to ask the child who just moved here from out of state to play at recess. We want them to pack a safe lunch and sit with the child like our son who is at a secluded table because of his food allergies. We want them to be a friend to the autistic child who has a very hard time talking to others. We want them to stick up for the child who is being teased for his height, the way her skin looks, or the clothes she is wearing. We want their first pick in gym class to be the little boy who struggles athletically or has physical disabilities.  And not because our children feel sorry for him, but because our children genuinely want him on their team. We want them to never comment on someone’s physical appearance unless they are giving a compliment. We want their hearts to break with the child who just lost a grandparent, and we want their hearts to celebrate with the child whose mommy just had a baby. We want them to be held accountable for any mistake they make and to learn from it. To not get sucked into gossiping and to never bully. To know that every person is beautiful and made just as they’re meant to be, and to love them. Wholeheartedly. You see, we truly want our kids to excel academically.  To earn good grades, go to college, and have successful careers. But we also know that will only get them so far. Because life isn’t about the report card or the standardized test scores. Life is about so much more. When we meet with you at conferences, we will be concerned about our kid’s academics, but we will first ask about what matters most. Are they being kind, compassionate, and respectful? So when you get overwhelmed with the pressure of test scores, the endless paper work, getting IEPs in order, or having every child at the proper reading level, remember there is so much more to your job. Please join us in focusing on the important things. Guiding the kids to be polite, caring, human beings. Kids who will one day be a positive influence in this world. Kids who need to learn to accept everyone regardless of their differences. So take a deep breath, smile, and let your love and kindness rub off on our children this year. And if that happens, you have been successful. Follow this journey on Mommy’s Love Marks.

How to Help Support the Family of a Child with FPIES

Our child has food protein-induced enterocolitis syndrome (FPIES), a severe allergy of the gut. His daily needs affect our daily life in massive ways. The process of Brighton’s diagnosis was one of the hardest times of our lives. We spent many draining hours at the doctor’s office and hospital which turned our life upside down. Looking back on that difficult time, I feel like we learned a lot about how to support others in similar situations. I realize every situation and person is different, so what was helpful and comforting to us may not be to others. Here’s a list of things we found to be helpful when we were dealing with the unknowns, tests, procedures and endless doctor appointments. 1. Choose your words wisely. This is difficult to do, but made the world of difference for us. Everyone always has the best of intentions, but that may not come across to a tired, drained parent. Never say, “I know what you are going through” or “I’ve been there before,” because the reality is, you don’t and you haven’t. Even if your child has the exact same disease, your life is different. Your situation is different. Your child is different. Never say, “Oh, it’s probably nothing,” “It will get better,” or “He’ll be fine and outgrow it.” These words are not comforting in those difficult moments. The truth is, it isn’t nothing. If there is a team of doctors at the children’s hospital running test after test on our infant, there is something. And yes, we pray Brighton will outgrow FPIES, but in the meantime, this is our life and it isn’t easy. Honestly, the words that would help the most were when people said, “I’m sorry; that really sucks, ” and “We are praying for Brighton and your family. ” For some reason, it made me feel comforted when people acknowledged how much it just sucked. Even though they weren’t in our shoes, they were acknowledging it wasn’t easy. They weren’t acting like nothing was wrong. They weren’t acting like they knew what we were going through, and they weren’t acting like they had our child figured out. They were acknowledging we were going through a rough time and that made us feel supported. The last thing someone with a sick child needs is to spend time talking to someone that is going to make them more frustrated, sad and exhausted. So even though you have the best of intentions, choose your words carefully. It makes a difference. 2. Call. Text. Write an email. Send a letter. Be present. Some people wouldn’t call or text. They knew what we were going through, but they never acknowledged it. Mostly because they didn’t want to bother us or they didn’t know what to say. I get that. And I appreciate that. However, it can be hurtful when family and close friends just disregard the situation. If you are calling at a bad time, that person won’t answer. If you text at a bad time, they will text you later. Be present in their life. Ask them how they are doing, how their child is doing, and how the other kids are dealing with it. Or just listen. It would help me to talk to someone that would just listen. Sometimes these parents need to vent. They don’t need you to say much, they just need to you to listen and to love on them. Other times they don’t want to say anything. They haven’t fully digested the situation, but they still want to know they have people there to support them. Let them know you are thinking and praying for their baby. And don’t be offended if they do not answer or respond right away, or if they never respond. Understand they have a lot going on, but know that reaching out to them and supporting them means so much. 3. Be helpful. This is a tough one, because everyone appreciates help in different forms. Try to talk to that person about what would be most helpful, but give them options. Don’t just say “let us know what we can do or when we can help” because honestly, that person will never ask for help. Give them a few options and tell them you are going to help no matter what, so they need to pick what’s best from these options. They need the help whether they say it or not. Some helpful ideas would be to bring a meal, drop off groceries, wash their floors, watch their kids so they can have a night out, or watch their other kids when they have a big doctor’s appointment, so they can fully focus on the appointment. Love on their children. These kids are feeling the stresses of what is going on. The biggest blessing to me was not only when a friend took my kids during the doctor appointments, but knowing my kids were being loved on and having a fun time while I was at the doctor. There are also helpful things you can do without coordinating with that family. When we went through everything with Brighton, it was fall, and the beautiful leaves were all over our yard. I remember thinking how badly I wished a magic fairy would come and rake our leaves. If you see their plants need watering, go water them. If their yard hasn’t been mowed in weeks, mow it. If their yard is full with leaves, rake it. If their gutters are full, clean them. If their driveway and sidewalks are covered in snow, shovel them. You get the point. Just show up. You don’t need to knock on the door or bother anyone — just be a blessing by doing the tedious yard work. Better yet, do it when you know they won’t be home. It truly will mean the world to them when they come home and see there’s one less thing they have to do that week. If you live out of town and have the means, send a gift card. A gas card, since the amount of money spent on gas to appointments is costly! A $5 Starbucks card. A care package. If you don’t have time, quickly order some snacks off Amazon (you’d be amazed how difficult it is for these families to get to the grocery store). If you don’t have a lot of money, send a card to let them know you are thinking of them. Little things go a long way and having a community of supporters makes a world of a difference. 4. Show up and support the cause. We were very blessed to have amazing insurance during this period of life, so the cost of hospital and doctor bills were not a stress for us. I cannot imagine having the stress of the add ed cost of every appointment. All the tests, appointments with specialty doctors, procedures, treatments and surgeries add up. Some families have fundraisers online or in person. Show up to them. Give to them. Even if you only give five dollars, it will help them. 5. Pray for them. There is only so much that doctors can do and the rest isn’t up to us. God has done amazing things. Pray for those children and those families. It is the single most important and easiest thing you can do to help. What about you?  What would you add to this list?

Dining at Restaurants With Food Protein-Induced Enterocolitis

Brighton. One evening, we were driving back from vacation. It was late and everyone was starving. It is not easy for our family to stop for something to eat. Our fourth child, Brighton, can’t eat at restaurants due to cross contamination. He has food protein-induced enterocolitis syndrome (FPIES). He was about 1.5 years old during this trip and had a handful of foods he could eat. We always bring his food with us, but with just having a few hours left in our trip, we were out of food for him. We looked hard for a place to eat, trying to think of somewhere that would have an avocado or banana for our son. We stumbled across a Chipotle. Perfect. We got all the kids out of the car and marched right in. After ordering everyone’s food, I asked if I could also buy an avocado. Just one, whole avocado. I explained that my child had severe allergies and he couldn’t eat anything there except for an avocado. The cashier shook his head at me and said that he didn’t think he could do that. “Please, I’ll pay $20 for just one avocado.” I didn’t care what it cost, I just wanted my son to eat something. My eyes filled with tears as I thought about bringing all the other kids their food and having nothing for Brighton. I could tell this young man wanted to help me. So he got his manager. “Please Sir, I will pay anything for one avocado. I would buy him some of your guacamole but he would get severely sick. An avocado is all he can eat.” And… the manager said no. We then fed our other kids while my husband distracted Brighton and fed him a bottle of his special formula. And it broke my heart. Thankfully, this doesn’t happen everywhere. There have been many restaurants that look at me strangely when I ask for one banana or one avocado. But they always figure out a way to ring it up and serve it to me. Sometimes I explain the situation. Sometimes I don’t. Sometimes they cut up his banana and bring it to him on a plate.It seems so simple and silly, but this makes our son’s day. He gets to eat like everyone else. Then he looks up at them with his big dark eyes, messy hair, dimpled smile, and says thank you. And he means it. More than any other child. The fact that you brought him a banana on a plate may seem meaningless to you. You don’t know his story, but you made his day. You don’t know that he eats the same few foods over and over. You don’t know that there have been restaurants that have refused to sell us one banana or one avocado because it’s not an item on their menu, although they clearly have it in back. But you did something. You helped our son. You made up a price. You figured out a way to ring it up. And you served it with a smile. No questions asked. And we thank you. Because you just gave our little boy a real life experience to be “normal” at a restaurant.You filled his belly with food, and you filled his heart with joy.We hope more people and restaurants can learn from your service and kindness. Follow this journey on Mommy’s Love Marks The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. Check out our Submit a Story page for more about our submission guidelines.

Thank You to Teachers as I Care for My Son With a Rare Food Allergy

Five days a week for the past 10 months, we have dropped off and picked up two of our kids at school. For 32 and a half hours every week, we have put our children in the hands and care of someone else. Someone who started off as a stranger. Thirty-two and a half hours. I’m a stay-at-home mom and our children spend this much time out of my hands. I often feel I’m extra protective of them because our fourth child, Brighton, was diagnosed with a rare disorder called food protein-induced enterocolitis syndrome (FPIES) a year and a half ago. FPIES is a type of food allergy that affects the gastrointestinal tract. Brighton is 2 years old and can only eat 17 foods. FPIES has truly changed our life and what we view as safe for our children. Even though Brighton isn’t in school, the fact that our child has FPIES has made us appreciate teachers even more because they are committed to being there for our other children. So to all those dedicated teachers, I want to say thank you. Thank you for being there for our family and supporting us as we navigated through the diagnosis our our son. Thank you for being tender-hearted to our daughter the morning after she spent many hours in the hospital during her brother’s reaction. When we were consumed with getting our baby boy healthy, you were there for our daughter and she sure needed that extra love and attention. Thank you for easing our anxiety when we drop them off at school every day. Thank you for sharing special moments and pictures with us like when one of them loses a tooth during class and for texting us pictures of our child at a field trip we couldn’t attend. Thank you for dealing with all of our questions and our constant need to check up on our child’s progress. Thank you for being understanding of us pulling our children out of school so they could go visit their grandparents. Thank you for being kind and encouraging to our child on the day we told her we were moving 1,274 miles away. And thank you for going out of your way and being her pen pal as she adjusted to her new home. Thank you for not getting upset with our child that one day he made a poor decision in the lunch room. Thank you for dealing with the situation in a firm, loving and effective way. Thank you for not judging us when our kids come to school in too small, too big or mismatched outfits, since they clearly had to dress themselves. Thank you for accepting our entire family and for not minding we had to drag every child to conferences with us because we had no one to watch them. Thank you for not caring we had forgotten to sign our child’s folder for the past three weeks. I promise we see it; we just don’t quite have it together. Thank you for having extra snacks that day I forgot to pack one for our child. Thank you for not caring we wanted to be the ones who walked our daughter into her kindergarten classroom every morning — usually a few minutes late. Thank you for making our children feel special on their birthday because every year on those days I so badly want to keep them to myself. Thank you for being there to ease our daughter’s anxiety that one day I was running a few minutes late for pick up. Thank you for not just teaching our children math and how to read, but for teaching our children how to be kind, respectful people. We sure can use the help. Thank you for being a part of our village. Thank you for loving our children as your own. Thank you for making school a safe environment for children with disabilities and allergies. Thank you for bringing awareness to FPIES and educating your entire class on the importance of not only having clean eating areas but also accepting the differences in each other. We wish we could give you more than a thank you, so you could feel the depths of our gratitude. You constantly do many important little things with such great love.It may seem like it goes unseen, but we see it. All of it. From the bottom of our souls, we are forever grateful for the positive influence you have had on not only our children’s lives but every child’s life. Follow this journey on Mommy’s Love Marks. Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.