5 Ways to Support a Family With a Sick Child

216
216

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 added 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?

MIGHTY PARTNER RESOURCES
216
216
JOIN THE CONVERSATION

The Sage Project Wants to Make Food Shopping Easier for People With Allergies and Sensitivities

255
255

Imagine if you could go to the supermarket already knowing which products were allergen-free without having to read all of the labels once you got there. Thanks to the Sage Project, this idea no longer has to be a fantasy for those with food sensitivities or allergies.

The Sage Project is a website created by designers, dietitians, and creative technologists to make nutritional information and food labels more accessible to the average person. “We created the Sage Project out of our own personal frustration with food data and food labeling,” Sam Slover, Sage Project’s co-founder and chief executive, told The Mighty. “All too often, we find food data to be a black hole: it’s confusing, generic, and people are not really empowered to make better decisions based on it.”

Through a comprehensive evaluation of your lifestyle, allergens, and dietary preferences, Sage’s web-based platform takes all of the guesswork out of finding products that work best for you or your family. It can be accessed through the internet browser on your phone or laptop. “The entire platform is based around the concept of personalization,” Slover said. “We get to know a bit about you, and then help you find products that are right for you – and avoid products that are not right for you.”

Types of diets

If you have an allergy or sensitivity, Sage will remove any food items with that allergen from your list of products. If you venture off your list and look at a product that contains items you cannot eat, Sage will flag the item – letting you know it disagrees with your dietary needs. The platform covers 16 allergens, as opposed to the eight the FDA mandates be clearly marked on labels. You can also customize your profile to show you foods that follow a certain diet like paleo, vegetarian, raw or vegan.

product-visualization-badges-2

Sage’s website is easy to use and well designed. In addition to its focus on dietary restrictions, Sage can tell you how much exercise it takes to burn off a serving size, where your food was shipped from, and detailed explanations of the ingredients in your food you may not be able to pronounce. The platform also gives badges to foods, which highlight facts about items that might not otherwise be apparent on standard food labels. Badges include “great nutrition for price,” “contains probiotics,” “no added sugars,” and “no artificial colors or flavors.”

Visualization showing how much exercise is needed to burn off a serving size

Currently, Sage only supports food products that can be found at Whole Foods, although many of these items can be found at other supermarkets as well. According to Slover, the company is working on expanding to additional supermarkets and broader, more-conventional products.

255
255
TOPICS
,
JOIN THE CONVERSATION

I'm Not Lying About My Food Allergies to Make Your Job Harder

139
139

I want to preface this with as sincere a love note as possible to all the under-appreciated hard workers within the food service industry: I am sorry. I am sorry the self-defense barriers you have spent years building need be so readily deployed. I spent four years living the ins and outs of the culture of a restaurant where I worked, saw the mistreatment, felt the mistreatment, watched the mistreatment creep and whistle and follow each of you home. I am sorry that customers can so often prioritize the pink gradient of their steak or the timeliness of their drink order over their basic treatment of another human being.

As someone who has tried my best to carve an entire self out of a philosophy never to make the burden of someone’s job heavier, I am a huge advocate of the voices of food service industry workers. For as long as I can remember, I complacently ate ingredients I hadn’t ordered and didn’t care for. I overtipped servers regardless of their performance. I witnessed the snapping, disrespectful customer and vowed never to be anyone anywhere near that.

But then my health failed. Then my body changed. Then suddenly I was forced to confront the realities of an autoimmune disorder that diluted the wonderful world of cuisine and social outings into kale and medication and the overwhelming fear of leaving my own kitchen ever again.

I painstakingly shifted each and every one of my lifestyle habits to better facilitate my body’s healing. I went to a specialist every week. I became a flurry of supplements, vitamins, medications, injections, biopsies, etc. I arranged my workload and social life around my sleeping and cooking necessities. I avoided celebrating as many holidays as possible. At 23 years old, I was already very much confronted with the reality of never eating birthday cake and never drinking alcohol again. On top of all this regimen, I was still very much feeling like crap. I avoided friends, feelings, events, and most notably, I avoided restaurants given the newly heavy guilt/fear combo meal that came along with them.

This fear, however, was immediately and consistently met with affirmation. Though I tried my hardest to blanket every complicated order with hefty apology and niceties, even my smallest requests were most often met with notable tonal shifts, eye rolls and sometimes even outright refusal. I thought if I could just explain, just push the big, red “allergy” emergency exit button on their patience, all would be well and I could go back to the guiltless ease and enjoyment of whatever date/holiday/interview/lunch break/etc. I was there for.

But I knew the category I had been tossed in from the moment I saw each server’s face. Even if they were extremely, externally supportive, even if they painlessly took back and swapped out and read labels and made exceptions and mixed recipes with grace and professionalism, I was unavoidably, perpetually one type of customer in the summation of their workday: difficult. This very fact alone, regardless of the treatment that sprung from it, was enough to bring me to tears.

Out of all the things my illness had stripped me of, this inability to be who I wanted to be, was the hardest robbery to face. I could avoid ingredients that gave me hives, fevers, panic attacks, insomnia, nausea, you name it, but I could not avoid the prospect of being instantly hated. At the end of the day, however, if I wanted to re-acclimate and stop hiding and stay healthy, I had to confront it head-on.

What shocked me most, beyond just the basic dismay of receiving eye roll after eye roll for disclosing a health condition for necessity’s sake, was the amount of times it was blatantly ignored and I got sick as a consequence. My view from the other side has shown me just exactly why this happens: servers most often think I’m lying. They run the numbers and calculate the probabilities in their head, become a magical allergy whisperer on the spot, and then deduce whether or not they deem me worthy of real medical history. I have seen this time and time again in their response and all across the internet. I am either a liar who is just following whatever dieting trend arises at the time, or I am a lawsuit waiting to happen. And I see where that perspective comes from, have witnessed the character from the other side, the one moaning about the smallest detail and making life hell. But you do not see beyond what you are willing to see.

You do not throw basic human respect out the window just because you have a hunch that her hardship is not real. Little do you actually know, I am a terrified 20-something who had just started to feel OK about myself and my ability to get by, when an illness came from left field and smacked me in the face. Made me stay home from every conceivable social event and barely be able to wake up for work some days (today). I am not looking for someone to pity me. I cook my own meals three times a day, I enjoy what I have been able to scrape together from the nothing that I have access to. I find ways to still enjoy dancing and parties and the repeated speech I have to give to any stranger who happens to be around me when I eat. My life is not a tragedy, and I don’t pretend to deserve anything more than what you and all the others around me deserve. But as I sit here, erroneously trapped within a black hole of mean online comments in which another girl with allergies has been told to just “drink bleach instead,”  I find myself incapable of grasping all I have lost.

This is not about self-importance. This is not about some warped idea of privilege. This is illness. Whatever you think you know, even if you think I am a practical joke or your comic book nemesis sent in to destroy your life as you know it in the form of ordering sauce on the side, when someone tells you they have a food allergy and you do not take every possible precaution to accommodate that, you are putting another person’s life and wellbeing at risk. You are basically telling them you’d rather be right in your misconceptions than ensure they stay alive and well. That is about as serious as serious gets. When the consequences of your gut feeling being wrong are potentially fatal, everyone should be 100 percent listened to. Every time.

Here is the thing: I respect you. I hope the respect of others finds you and wraps around you and leaves you nothing short of whole. But if you return that same respect, I shouldn’t have to apologize for how difficult my chronic illness might make things for you.

Forget birthday cake and holiday get-togethers, forget interviews at coffee shops or drinks with friends. Erase the ease of midday hunger and the ways someone else can fill it. These are things I can handle. These are sadnesses I can take. But give me back the smiling waiter, genuine and informed, and the ways I once felt bound by compassion. Give me back the ways my own sadness did not automatically make me a “horrible liar,”  a conniving fraud. Give me back the restaurant, and a bathroom in which I do not cry, and a booth in which I do not feel horrible. Whorl the buzzing diner lights around me and understand: I am just trying to get by, too.

Lead photo source: Thinkstock Images

139
139
JOIN THE CONVERSATION

What I Want You to Teach Your Children About People With Food Allergies

3k
3k

I lie here, weeks before major surgery, worried what would happen to my kids if something goes terribly wrong. My husband is wonderful and quite capable, but they need their Mama, their food allergy warrior. I have trouble drifting off to sleep. I dream of a good outcome. I dream of hugging my children after surgery, letting them know everything will be OK.

My kids both have life-threatening food allergies. I don’t just worry about the normal things parents worry about. I worry every single time they eat or drink something. That’s every single day. Every single bite. Every single sip.

It’s an endless amount of fear and anxiety that you face, an endless fight to figure out how to keep them safe. A fight, like many others, that you cannot possibly understand unless you’re going through it yourself.

I also have food allergies, as does my husband, but we never took them seriously until our precious children got them. You learn to adapt and educate yourself very quickly when your children’s lives are at stake. 

You’re surprised to learn that only a very small amount of their allergen can kill them. 

Now let that sink in.

A few tiny particles of food can kill your child.

How would you feel if you got this news?

It is a daily battle of preparing many homemade foods, reading labels, calling food companies to verify whether or not cross-contamination exists in their factories, making sure your kids are included and safe and protecting them from bullies (adult and child) they may encounter in person or online.

It’s a battle I wish we didn’t have to face. It’s a battle I wish none of you had to face. But the reality is that many of you will someday. One in 13 children currently have food allergies, according to Food Allergy Research & Education. It’s something we all need to participate in and be prepared for.

Even with the prevalence of food allergies, many still don’t understand the dangers involved or don’t even care to try to.

Because it doesn’t affect them.

Many still view food allergies as something that’s OK to make jokes about. They ridicule those afflicted or even bully children or the parents of kids who suffer. Food allergies affect a person’s ability to eat, drink, breathe, thrive and survive. It’s not something to joke about.

I worry about the struggles my children will face trying to stay alive every single day when there are so many things that could harm them. Everyday things such as food, drinks, lotions, shampoos, peanuts or other allergens on airplanes, events, parties and even dental visits could wind up becoming life-threatening due to certain hidden ingredients.

I haven’t had enough time to educate my young children on how to stay safe. As I prepare to have surgery, I pray I will get more time to continue that education. I pray I will be able to supply them with enough knowledge to lead healthy, productive and happy lives.

I also hope anyone reading this will try to put themselves in my shoes. What would you do to keep your children safe? I believe the answer would be — anything! 

So please understand that food allergies are real, serious and life-threatening. Food allergy families are only trying to protect their children from harm.

Be compassionate and helpful to these parents and any parents handling any type of disability or challenge. 

Teach your children that bullying because someone has food allergies, or for any other reason, is unacceptable.

Lead by example.

Don’t bully or joke about those with food allergies or other disabilities, and maybe your children will grow up to be kind, empathetic people.

It all starts with you and how you treat people. 

Treat them well.

Remember, we’re all in this together. We’re all facing challenges with something.

As I prepare to have surgery, I pray this message will reach many. I pray my children will survive and thrive no matter what happens. I pray I will be OK and wake up from anesthesia to a more tolerant and humane world.

Please help this dream become a reality.

3k
3k
TOPICS
JOIN THE CONVERSATION
Tracy Boyarsky Smith's children

The Conversation You Should Have With Your Neighbor With Severe Allergies About Birdseed

29
29

Who doesn’t love to see a cardinal flitting through their yard on a crisp summer morning. You sit at your table, sipping that fresh cup of coffee, and the sunlight is shining through the trees and reflecting off the window pane. It’s a storybook moment.

So inspired by nature’s beauty, you refill the birdfeeder, doing your part in a concrete world to preserve the little bit of nature we still have. You smile — you’re loving life.

Meanwhile, my son is so scared to go outside he cries about it. He has panic attacks at 10 years old. He puts on his long socks and shoes to run in his backyard. He can’t go out in bare feet or sandals this time of year.

That birdseed you just put in your yard could contain peanuts or peanut shells, and my son is anaphylactic to peanuts and allergic to tree nuts.

My son almost died at 3 years of age, and even after using his EpiPen, his reaction came back less than 10 minutes later in the ambulance, and he almost died again. We may not be so lucky next time. So it’s pretty serious.

I get it — you want to feed the birds. Who doesn’t? My kids would love to be able to walk into a store, pick any birdseed that looks good and set up shop in the backyard. But they can’t. They could die from it.

So I’m not asking you to stop feeding the birds or use soil for your flowers — because that, too, could contain peanuts. If you don’t have an allergic child or adult in your neighborhood, have at it.

But if you do have a person with severe nut allergies in your neighborhood, especially a child because they may not remember to take the precautions that an adult would, I’m asking you to have a conversation. Find out what their medical needs are — exactly. If your neighbor is deathly allergic to wheat, maybe you shouldn’t throw pieces of bread in the backyard. I’m just asking that you be sensitive to your neighbor and these health issues.

This is why birdseed that contains peanuts and nuts can be dangerous to my children with severe peanut and nut allergies:

It’s because the animals don’t often eat the food immediately, especially with the shells, but even the nuts themselves. They can bring the shells and nuts to their home yard and bury them for later (in my yard). They may eat a bit and drop the rest in our yard. There are a million different scenarios. How many of you have found a peanut shell in your yard or near it?

We see them on the steps of the school. We see them in parking lots. At church. They’re everywhere this time of year. I can’t control these public places. And, the reality is, I can’t control my own backyard for my son. He remembers what it was like to almost suffocate to death. That’s what happens. Your airway becomes restricted until you die. It’s pretty scary for an adult and overwhelming for a child.

So if you know you have an allergic child or adult in your vicinity, please consider having a conversation. Find out their comfort zone. The possibility of cross-contamination exists, so ask them if non-nut birdseed is OK. They will be so amazed and delighted that you cared enough to ask. I have heard that Cheerios, lard with cornmeal and other options are possible.

If you do, my son might be able to:

Run in the sprinkler in his bare feet or sandals.

Sit on the grass for a picnic.

Play kickball without worrying it will land on a nut or shell.

Roll around in the grass and scream at the sky.

Pick grass, hold it between his thumbs and blow it like a whistle.

Pick “flowers” for his mom without worrying if his throat will close up if he touches them.

Just be a carefree kid who for once doesn’t have to worry in his own yard.

I’m not really asking for a lot. I’m asking for a conversation. I’m asking for my son to have a few of the joys of summer.

Help me keep him healthy this summer. Help me ease his constant worry about death being at his door at any minute. Help me restore his faith in youth, summer and his neighbors and community.

Help me help him just be a kid.

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.

29
29
TOPICS
,
JOIN THE CONVERSATION

To the Teachers Who Are There for My Family as I Care for My Son With a Rare Food Allergy

136
136

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.

136
136
JOIN THE CONVERSATION

Real People. Real Stories.

6,300
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.