Ten Things Moms Of Kids With Food Allergies Are Doing On New Year’s Eve

My how quickly time flies. The new year is upon us, as we all sit back and reflect upon what we have gained, lost and learned during the last year.

Many of us in the food allergy community have gained new friends, new experiences and some great memories. We will treasure each one, as we move on to another year.

Our food allergy community has lost some wonderful children and people in 2017. We will not forget them, and will do what we can to help their families honor them and spread awareness.

We have walked in a Food Allergy Research & Education walk to raise money, we have done much research and made many phone calls, we have learned about some new products to try,  and some new advances in food allergy research. We have gained some humanity through our struggles, we long to pass on our knowledge and to help others. We are determined, and we are hopeful.

Here is a list of some of the things we may be doing on New Year’s Eve:

1. Planning a fun night for our kids, whether it’s at a party or at home. If we plan on attending a party we will most likely bring our own allergen free food/drinks to ensure our children are safe. We always make safe Shirley Temples with lemon-lime soda or ginger ale and melted Luigi’s Cherry Ices, which are nut free. We also make some appetizers like homemade pizza, pigs in a blanket or crackers and cheese. We make either homemade black and white cookies or brownies. The snacks are delicious and we toast the new year with our party hats on and lots of smiles, as we continue the tradition of watching Dick Clarks New Year’s Rockin’ Eve.

2. If we are hosting our own party we will do whatever we can to be inclusive. We will find out beforehand if any of our guests, especially the children, have any special or dietary needs or allergies. We will change our menu, music, lighting, plans in order to accommodate and include everyone. We want all guests to feel welcome and safe. If we are attending a party, we watch our children like a hawk. We make sure that they only eat what we bring for them, or what we know is allergy friendly. This is something we have practiced often during the year and they must learn this rule at an early age. Mistakes happen though, so we must clutch our epinephrine injectors and stay close to our children. We must do this until they are old enough to keep themselves secure and make informed decisions. If there happens to be a rude party guest who has no concerns for our child’s safety, we must be prepared to leave.

3. Relaxing at a vacation destination such as Walt Disney World, Marriott or Hershey Park Resorts where they have extensive training in how to keep guests with food allergies safe. When we go there we can all have a wonderful time, not have to worry about cooking, and let our kids dine out and enjoy their beautiful surroundings.

4. Trying to spread food allergy awareness to our family, neighbors and friends. Education is key in getting others to understand food allergies and become advocates not adversaries. Some topics like cross-contamination are confusing, but we can keep them informed and answer any questions they may have.

5. Checking out social media when we have a quick moment or two. We try to see if there is any food allergy news or updates. We share and pass on any knowledge to others. The more awareness the better. It helps to save lives.

6. Saying thank you to anyone who has helped keep our children protected over the past year. The support of family, friends, teachers, organizations and caregivers should never go unnoticed, and New Year’s Eve is a great time to thank those we may have forgotten over the holidays.

7. Thinking about goals for the New Year. How can we teach more people about food allergies? How can we relay the message that food allergies are life-threatening and not a joke? What more can we do to help keep our children safe from an anaphylactic reaction? What are some things we can teach them this year about how to keep themselves safe?

8. Spending time with the ones you love. Let them know how much you cherish them. Listen closely to their hopes and dreams. Help them realize them. Make plans for the future.

9. Thinking of the ways in which you can make the world a better place for those with special needs or disabilities. What good deeds can you do? How can you be a good role model to your kids? How can you show them that any type of bullying is wrong, including food allergy bullying? Teach them to respect others and treat them how they would like to be treated. Help them project the love they feel inside into the world.

10. Counting our blessings. We are so grateful that we have managed to keep our children with food allergies alive and thriving for another year. We may have made a few mistakes, or had a few close calls, but we will kiss their precious cheeks tonight with the knowledge of what we could have lost weighing heavily on our minds.

Thank you so much to anyone who has taught me and my child how to live safely with food allergies including No Nuts Moms Group, Allergic Living, FARE, FAACT, and Kids with Food Allergies Foundation. Thank you to The Mighty and Scary Mommy for publishing my blogs which spread more awareness. Thank you to the whole food allergy community and to the disability community, and all who support and love them. We would not be here without you.

We love you.

And whatever you are doing on New Year’s Eve, we hope you will be surrounded by the ones you love, and we hope you have a wonderful year ahead!

 

Kathy ❤

Nuts About My Son/Poetologie

 

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A Fountain Of Truth: Life With Food Allergies

It’s a warm day in December. The icy winds of last week are no more, as sun and sixty degrees greet us. We drive to MOD Pizza, one of the few restaurants in our area in which my nut allergic son can eat at safely.

I grab a booth and admire the industrial but cozy decor of the eatery, as my husband orders small pizzas for all of us.

MOD pizza inside stools

He grabs some delicious Boylan Soda Pop, Cream Soda for me, Root Beer for him, and Black Cherry for my daughter. I watch my son, whose allergy to all nuts and Stevia greatly limits what he can drink, look at us with envy. He asks if he can please just smell my cream soda because it looks so good, though he knows he cannot have a sip because most drinks are unsafe for him. He says that he likes how it smells and wishes he can have some.

Boylan bottling co bottle black cherry

I take out an apple juice box which he drinks all day every day. I see him sigh as he takes another sip, while he watches us savor our sweet beverages. I feel a huge wave of guilt wash over me and wish I had ordered a different drink.

I can understand how my son feels a bit as I have a severe allergy to shellfish. His nut allergy is much more limiting though, and much more difficult to manage as nuts are in an unbelievable amount of food/beverages/desserts/art supplies/hygiene products.

I did not become allergic until I was 28 years old. I had a whole childhood and many years of being free to explore the wonder of trying new foods, restaurants, bagel shops, bakeries, delis and ice cream parlors. The fun I used to have at Farrell’s and Carvel. Chocolate Egg Creams in Queens, boardwalk sausage and peppers in Seaside Heights. The joy of walking into the old Buda Bakery in Staten Island. Riding bikes to buy candy at the local deli for 25 cents. The smell of the local diner, pizzeria, Nathan’s or Rustler Steakhouse. Great childhood memories. A feeling of wonder and endless unencumbered possibilities that he will never truly know.

Buda Bakery - SI Advance photo

My son will never know that feeling since he had life-threatening food allergies since he was 4 years old. He cannot eat whatever and wherever he desires. In fact he can’t go to most food establishments. He must be careful about what he eats/drinks every single day of his life. He must learn to read every food label, and call many companies to see if their products are safe for him. He can never eat a food sample at Costco, or try anything unlabeled. He will have to learn to be a great cook/baker in order to experience many culinary pleasures that are mostly off-limits to him.

He can never let go, he can never be completely nonchalant around food/drinks, which are everywhere, if he wants to survive. He must learn to be as disciplined and in control as an army drill sergeant.

He will be left out of many school activities and not invited to many parties due to his disability. Many schools/restaurants/parents think that kids like him are not worth the effort of trying to change a few things around so he could be included safely. Many kids/parents will just roll their eyes and make nasty comments instead of trying to become more educated about food allergies.

Society is often very cruel to those who suffer from food allergies.

All of this flashes through my head as I take my last sip of my soda pop. I wish things could be easier for him.  I wish he didn’t have to worry about a bite of food, or a sip of the wrong drink, killing him on a daily basis. I wish he could have a childhood as carefree as mine.

But he cannot, so we plan and we play. We set up rules and we pay. With hard work, research and practice I pray he will have a full and happy life.

The next morning he reminds me to call Boylan Bottling Company to see if their soda is safe for him. I am greeted by a super nice representative on the phone. She happily informs me that their sodas do not contain any nuts. I await her response to see if they use Stevia in their sodas.

Stevia is used in many diet products now. What many people do not know is that it is making many people ill as it has many side effects and can interact with certain medications. Anyone with a ragweed allergy has the potential to suffer an allergic reaction to it. That is what happened to my son. He had a very severe reaction, vomited profusely, and nearly passed out after drinking a Capri Sun with it newly added. I was terrified as I watched him, grasping my epipen and I thought about calling 911. I never heard of Stevia before his reaction, and now we avoid it like the plague.

The representative comes back on the line to give me the great news that they do not use Stevia, only pure cane sugar and sucralose in their diet sodas.

I am ecstatic now as I give my son the news. He demands a super high-five as he smiles from ear to ear. This is a big victory for us as he can now add something to a small list of things he can eat and drink. It is a happy day.

We are so grateful to any allergy friendly restaurant or company out there. Companies that care, and label their products well, help enrich the lives of those with food allergies.

We need more of them. I will find them for my son as they appear over the horizon. I will teach him to find them for himself.

As a child growing up in the seventies and eighties when food allergies were less prevalent, life was a fountain full of possibilities. Now as we come to grasp with my son’s food allergies, and the drip drip of reality, we will work everyday to open up the world to him, to give him a wonderful and safe childhood.

I do not own a Zoltar Speaks Fortune Teller machine, but I do hope that when he is big, that he looks back as fondly on his youthful adventures, friends and experiences as I do mine.

Big Zoltar tom hanks

Kathy ❤

Nuts About My Son

All photos are my own except:

  • Buda Bakery photo property of Staten Island Advance
  • Big photo property of 20th Century Fox.

 

 

 

 

 

 

Kids Are Dying From Food Allergies: This Is What We Fear, This Is Why We Fight.

This weeks tragic story of 3 year old Elijah Silvera both breaks my heart and terrifies me as a mom of a child with a severe food allergy. Elijah was given a grilled cheese sandwich at his Pre-K school in Harlem, NY even though the staff there was told about his life-threatening dairy allergy. Here is a clip from CBS News:

https://www.msn.com/en-us/travel/newsus/health-department-closing-harlem-pre-k-after-3-year-old-dies/vi-BBEKBYD

This poor boy and his family. His death was preventable, and now his family must grieve for him for the rest of their lives. The Department of Health closed down The 7th Avenue Center for Family Services, which is where Elijah went to school, while they are investigating the incident.

Too many kids are dying from food allergies. I follow these stories closely due to my son’s and my own severe food allergies, so I know that they are very real, and happening too often. I will never forget these children, I will always carry them with me. Food allergies are not a joke or a fad, they are claiming lives.

Every time I hear about a death due to food allergies, I shed a tear, I get very anxious, I share the story, and I pray such a fate won’t await my son and I.

This is what we fear, this is why we cry, this is why we fight.

Many people don’t seem to be getting the message that food allergies can be deadly. Many people don’t realize that according to FARE, someone is being rushed to the emergency room every three minutes due to a food allergy reaction. Many people are either uninformed or do not care. They don’t want to be told what to do or what to eat. Many don’t care that many children are dying from this hidden disability.

I hear and see people’s callous remarks all the time. Remarks like “who are you to tell me what to feed my child?” or “are you going to try to ban every food at the school party?” or “why don’t you home-school your child.” or “why don’t you avoid restaurants and just eat every meal at home?” And the list goes on. The list that makes my blood boil. How can anyone be so cruel and inhumane? How can anyone not care that their actions or apathy can help lead to the death of a child?

Being the parent of a young child with food allergies is a difficult, full time job. One with no breaks, no room for error. Every parent makes mistakes, but if I let down my guard and make one- it could kill my child. My precious son, who will always be my baby.

IMG_1508

That reality is very hard to live with, but I do the best that I can to keep focused and to keep my son safe. I try to educate him and those around him as much as possible. I try to spread awareness through my blogs and social media.

I will do whatever I can to keep my kids and their friends safe. Their happiness and security is what is most important. If I have to make some changes, remove some foods, or wash my hands more due to an immune-compromised child I will. Whatever it takes.

That’s what good friends, neighbors, and communities do.

That’s what we all should do. Without the rolled eyes, snarky comments and selfish behavior.

If a child needs some extra help, let’s help them. If a child needs some food/clothes, let’s chip in and buy them. If a child cannot be near a certain food, let’s remove it and/or keep it away from them and take the necessary precautions such as hand-washing.

Let us be open to food allergy awareness and educate ourselves as to how to protect the one out of thirteen kids with food allergies. Learn the signs of a reaction, learn how to use an epinephrine auto-injector, learn how to be part of a team involved in keeping a child thriving.

It is good that the media is covering such heartbreaking stories. Maybe it will open a few people’s eyes. Maybe they will realize that their ignorance, nasty comments or actions can make them complicit in a young child’s death.

There is a long way to go though. Food allergies seem to be the one disability that it is still okay to make fun of. Many comedians and TV shows think it’s hysterical to see someone going into anaphylactic shock. As someone who went through it and almost died, I can tell you that it is not. Face swelling, rapid heartbeat, tongue swelling to the point of not being able to take a breath is not fun. It is terrifying and will haunt me and the millions who go through it for the rest of our lives.

So please stop joking about food allergies. Educate yourselves and others, spread food allergy awareness with your platforms. Believe a mom who tells you that a nut or other food can kill her child just as sure and quickly as poison.

And do something to help, not hurt those with food allergies.

I keep dreaming of the day where people don’t roll their eyes when they hear about a child like my son having food allergies. Where they selflessly offer to do something to help keep them unharmed out of sincere kindness/concern. Where they don’t think my son’s condition is a punchline.

It only takes a few small steps/changes to make a difference in the lives of children who have food allergies, and you may even help to save them. You may even help prevent them from being bullied or excluded.

Our world needs compassion now more than ever.

Help those in need. Help those with disabilities or life-threatening conditions.

Help prevent the next tragedy by teaching empathy to your children, and by practicing it yourself.

 

  • Here is the GoFundMe page set up for Elijah’s family:

https://www.gofundme.com/SayingGoodbyeToElijah

It’s Teal Love This Halloween

You may say I’m a dreamer
But I’m not the only one
I hope some day you’ll join us
And the world will be as one – John Lennon

You may have seen a few in your neighborhood or local craft store. You may have thought they were just a new fad or decorating trend. But they aren’t.

They are so much more.

Teal pumpkins have a significant and compassionate message. They signify inclusion for children with food allergies or intolerances. They signify teal love which is what a food allergy mom feels for her child, and what a community feels for the children in it. I dream of seeing teal pumpkins in every store, at every festival, on every block. I am a food allergy dreamer, and I will not stop dreaming, planning and blogging in order to make this world better and safer for my 6 year old son who has a life-threatening allergy to all nuts.

John Lennon writes “from this moment on I know, exactly where my life will go, seems that all I really was doing, was waiting for love.” My son brought so much love back into my life after suffering 5 miscarriages. I will protect him and show him all the teal love that I can, for as long as I can.

Teal is the color that was chosen for food allergy awareness. In 2012, Becky Basalone created the Teal Pumpkin Project as a way to spread this awareness in a positive way. She began painting pumpkins teal and handing out non food items, such as glow sticks or spider rings, on Halloween.

Her wonderful idea spread very quickly and was soon being promoted by Food Allergy Research and Education. FARE is an organization leading the way in regards to educating the public and funding research of food allergies.

When I got over the shock of my son’s food allergy diagnosis, I feared for his safety, and I feared that he would not be able to enjoy many of the things his peers did. I wondered about how family vacations would change. I wondered about holidays like Halloween.

I wanted him to continue our tradition of going trick or treating, but I knew that he could no longer eat the candy he received due to his life-threatening allergy to all nuts. The first year I put some gloves on him which matched his Super Mario costume, and I let him take some candy. As soon as we got home I put that candy away for donations to local groups, and I gave him a bag that I pre-filled with safe nut-free candy.

Mario & Luigi kids 2015

He didn’t know the difference, and I was glad that my efforts had paid off. Soon after that I learned about the Teal Pumpkin Project. I was so grateful that such a thing existed, and I felt very uplifted.

Each year as we go trick or treating, we see a few more teal pumpkins, and many more non-food bowls of toys, etc being offered. I explained to my son how amazing it is to see such caring people in our neighborhood, people who are going out of their way to see that he and other children like him are included on Halloween.

We participate by painting teal pumpkins each year, and by providing some non-food treats in a separate bowl to avoid cross-contamination by the nut-free candy in our other bowl. We also try to help spread the word by talking to friends and family, and via social media.

Ryan painting teal pumpkin at FARE walk

When I find out about simple projects or ideas that I can participate in to help children, I often join in. They often do not take up much time, and can mean the world to a child.

It doesn’t matter if such projects directly affect me or my family. It matters that we all can make a difference in other’s lives.

In fact we should.

It doesn’t take much to participate in the Teal Pumpkin Project, and the little effort you put in can mean the world to a child with food allergies or intolerances.

These children often get excluded or bullied. Just because they have a life-threatening allergy to food. They would love to be allergen-free and be able to eat whatever they want, but they cannot. They learn to slowly accept their diagnosis and have to learn to function in this allergen filled world as they grow up. They cannot go to most bakeries, restaurants or ice cream shops. They shouldn’t have to give up their Halloween traditions as well.

We can all help them by providing a safe environment for them in which they can be included. If you have any questions, just ask their food allergy mom’s or families who will help you learn more.

All it takes is a few questions and a few meaningful acts to make a difference in these children’s lives.

So show some teal love this Halloween, and the world will be a much more boo-tiful place.

Just Imagine.

 

 

 

 

 

A Letter to My Child with Food Allergies New Teacher

Hello, it is so nice to meet you. My child had a nice summer, I hope you did too. He is a little nervous about starting the new school year, but is also excited for it to begin. He is smart, kind and has so much to learn about the world. He loves his older sister, video games and his pet hamster Zaychu.

I am glad that you will be teaching him so many new things. I am glad that you will be there for him. I want to thank you beforehand for all you will do for him. I appreciate all the sacrifices you sometimes have to make for children with food allergies like my son. I appreciate your patience, kindness and compassion.

I understand that it may be frustrating at times to have to change some things in order to protect my child. It may take more time for all the hand washing, lesson planning, and extra steps needed to make sure my child is not excluded. You may have to watch him a little more closely to make sure he isn’t having any reactions. I appreciate anything you will do to make sure he comes home to me safely each and every day.

I know that you are highly educated and trained to deal with many different situations and emergencies. I am grateful that you will be there if my child ever needs you. I am grateful that you will help to make him feel secure.

He has never been to a full day school. It will be difficult for him to be there all day away from the person who makes him feel the safest. Away from his food allergy mom. Away from the person who will do anything to protect him. The person who spends many hours in the day doing research, reading labels, and cooking things from scratch to ensure his safety. To ensure that he remains active, happy and included in a world full of his allergens. Allergens that can kill him.

Deep down he knows this. Deep down he is frustrated, angry and scared at this knowledge. He wishes he didn’t have food allergies, but accepts that he does. He is trying hard to learn some ways to be safe. He is being proactive in many ways, but often forgets things that I tell him. He is only 6 years old and has a long way to go and a lot to learn. But he is doing a great job, and I am so proud of him.

I hope that we will have a very good relationship. I hope that you don’t see me as another food allergy mom, but as a loving mother who fears for her child’s safety when he is away. It is really hard to live with the fact that a tiny amount of food can kill your child. Your child who eats many times a day. Your child who takes a piece of your heart with him wherever he goes.

Including when he goes to school. So many innocent mistakes can happen there, I just want to try to make sure that they don’t.

I will do all that I can to help you, to answer any questions, and to make your job easier.

Just let me know what you need, any time day or night. Whether it’s more supplies, safe food for a celebration, or art supply research, I’ll be there.

A teacher lives.

A teacher loves.

With a heart as big as the sun.

A teacher gives.

A teacher breathes.

Dreams and hope into their little ones.

Thank you so much for being there for my child. Thank you for all you will do for him, and for being a teacher. Teachers are not thanked enough for all they do. They breathe hope into our little ones, and make the world a better place.

I love my son with all of my heart, and I’m sure he will work his magic and become a part of yours.

 

 

Ten Important Lessons I’ve Learned About Shellfish Allergies

This month I had two cross-contamination reactions to shellfish. They really scared me. They really opened my eyes.

I suffered a minor reaction to shellfish when I was 28 after dining on shrimp scampi in Santa Barbara. While walking back to my hotel room I felt tingly and itchy all over. I felt strange and dizzy and panicky. Something was not right. A coworker told me that it may be a food allergy reaction, and gave me some over the counter allergy medication. I never took that first reaction seriously, and I never followed up with a doctor. I just went on with my life.

That was a horrible mistake, one that almost cost me my life. That is a mistake that too many people are making. Too many people don’t take food allergy reactions earnestly, or think they will never happen again.

Later that year, while eating shrimp scampi once again, I went into anaphylactic shock and almost died. It happened very quickly, and thankfully a hospital was nearby. The staff there saved my life. I was so surprised by what happened because I had eaten shellfish my whole life, and I didn’t take into consideration my first minor reaction.

Since then I have carried my Epipens, but didn’t do more until my young son was diagnosed with food allergies. I realized that I had not been proactive enough in regard to my own food allergies, so I was more careful for awhile. But then I wasn’t. Life, illness and constantly worrying about my son got in the way.

I put all my time and energy into keeping my son safe, but I was not putting any energy into keeping myself safe. I have not done any new research, and I often forgot to tell food establishments about my allergy.

I thought just avoiding seafood restaurants was enough.

I was wrong.

One of my cross-contamination reactions happened while eating food from a local supermarket here in Virginia. The other happened while eating a Subway sandwich at Hershey Park in PA. My whole mouth tingled and burned, and the roof of my mouth swelled up. I felt weird and lethargic. I hadn’t had that feeling in over 20 years. The feeling of fear/panic/dread that I may be going into anaphylactic shock.

The feeling I will never forget.

The feeling that I never want to have again.

I clutched my Epipens both times and had my family with me. My husband watched me closely and was ready to call 911 if necessary. I was ok, but I learned some valuable lessons/tips that I want to share.

  1. Learn what foods are considered shellfish. I was completely shocked recently to learn that calamari (which is often fried in the same oil as french fries, mozzarella sticks, etc) is in the shellfish category. Some other kinds of shellfish are – prawns, crayfish (crawfish,) crabs, lobster, shrimp, oysters, scallops, clams, mussels, octopus, sea urchin, escargot (snails,) cockles, abalone, conch, periwinkles, whelk.
  2. According to FARE – “Approximately 60 percent of people with shellfish allergy experienced their first allergic reaction as adults.” This happened to me after eating shellfish for over 20 years. Please be careful because it can happen to you too.
  3. ALWAYS tell your servers that you have a shellfish allergy whether you are at a restaurant or sandwich shop. Make sure that they let the chef know and that they can safely accommodate you. Ask them if their establishments share fryers/grills with seafood.
  4. I also tell anyone who comes into contact with me that I have a shellfish allergy such as dentists, doctors, hairdressers, xray technicians, etc. You never know what ingredients are in products used to treat you.
  5. Avoid seafood restaurants, or maybe even most Asian or Thai ones. Their menus are full of shellfish or shellfish ingredients/spices/extracts/broths. I had a scare last year when I was given shrimp spring rolls instead of vegetarian ones. I ate one and had to stick my finger down my throat to vomit it out. This is not a good way to prevent anaphylaxis because it was ingested, but I did it anyway just in case it would help. I was okay, but have not eaten at an Asian restaurant since. Call or visit all restaurants to determine if they are food allergy friendly before dining at one.
  6. Avoid clambakes, oyster festivals, or any celebrations with seafood everywhere if you can. Just being around these events can produce reactions. Don’t handle/touch any shellfish.
  7. Avoid cooking areas where seafood is being prepared. According to FARE the proteins in the shellfish can become airborne. That is why it is best to avoid these areas since these proteins can produce a reaction in some.
  8. Read the whole menu at places, and be aware of any additions, such as the new seafood sensation sandwich at Subway. I had no idea that there was shellfish at Subway, and it was the source of one of the cross-contamination reactions I mentioned earlier.
  9. Read the labels/ingredients to anything you will consume every single time. Things/recipes/factories often change. While I was at my doctor’s office she offered me a vitamin supplement that had a shellfish warning on the bottom, as does many vitamins/supplements. I also avoid anything with Omega 3 Fatty Acids such as pre-natal pills with them. They made my heart skip beats and made me feel bad so I switched to a different kind, this is my own personal experience though, check with your doctor. My local grocery store chain has a shellfish warning on their fried chicken, and I had a reaction to some cut vegetables. I no longer buy anything they repackage/prepare in their store. There is too much risk for cross-contamination as they share equipment.
  10. BRING YOUR EPIPENS/AUTOINJECTORS WHEREVER YOU GO!! Whether you are on land, sea or in the air bring them! Keep them at room temperature always, and protect them in cases/insulated bags/waterproof pouches. You never know when you may need them, and they may just save your life some day.

Please check with your doctor or allergist for any medical advice. Get tested, do research and be prepared. There are more things containing shellfish or cross-contaminated with shellfish than you may realize. It is for that reason that I have also chosen to avoid all kinds of fish.

We are just like little fish swimming in a great big sea of food allergens.

Tread carefully, but don’t be afraid to live your life.

Kathy ❤

Nuts About My Son

 

I Just Want My Child With Food Allergies to Come Home Safe

Last year my 5 year old son fell asleep on the couch. I was lying next to him and fell asleep too. I woke up around 3AM to the sound of him having a croup-like cough, and he was struggling to breathe. I was terrified as I listened to him gasp for air. I didn’t know for sure if he was having a food allergy reaction or some other type of reaction, though I suspected it was illness related since he felt warm and hadn’t eaten in hours. There was no time to figure that out though, only time to act.

I immediately shouted for my husband, who is a registered nurse, to come downstairs. He ran down in a panic because he knew from the tone in my voice that this was serious. He turned on the light and didn’t like how my son’s coloring was very pale. He could see that my son could barely swallow, and that his breathing was very labored. He told me to call 911 right away as he cared for him and monitored his vital signs.

I felt like I was in a horror movie of sorts. I was somehow outside myself as I called 911. I felt like someone else telling them that my son could barely take a breath and to get here fast. I remembered to tell them to make sure there was epinephrine on the ambulance since there was a slight possibility this was food allergy related. I held on to the phone as I watched the life slowly drain out of my son. I had never been so afraid.

I will never forget the look on my son’s face as he stared at us to help him. So desperate, so innocent, so heartbreaking. But all I could do was hold him tightly and tell him that I loved him, and that help was on he way.

I told him that he would be okay soon, but deep down I was not sure.

The ambulance arrived very quickly, and my husband ran out to them with my son in his arms.

I knew that my husband was medically trained and handled these situations better than I did, so I was glad he was the one who was in the ambulance. I also knew that the EMT’s would be doing all they could to help him.

But, as I hurried to get my 10 year old daughter into the car so that we could meet them at the hospital, I was fearing the worst.

What if they couldn’t get him to breathe? What if they couldn’t save him?

I had no idea what was going on in the ambulance. The 10 minute drive to the hospital felt like an eternity.

As we arrived, I asked them if my boy was okay, and if we could see him right away.

I felt like I was going to faint as I awaited their response.

They said he was doing okay, and walked me back to his room.

I felt like I could breathe again.

I had never seen a more amazing sight than that of my son lying on that ER bed, able to breathe and moving around. His color looked better. He looked better.

He was alive and my heart sang.

Tears ran down my face as I ran to hug him. He had oxygen tubes coming out of his nose, and he was clutching a little blue teddy bear that the staff had given him.

I gave him a big hug and kiss and told him how much I loved him. I brought my traumatized daughter over to him to see that he would be okay. I could see the fear leave her face, and relief replace it.

Though my son had a bad case of croup, and was later found out to have asthma, the scene I described above was similar to what food allergy families often go through.

Many terrifying trips to the ER, many doctors visits, many false alarms, many severe and mild reactions.

It is a daily minefield we walk through, and unless you have witnessed your child come close to dying, you cannot possibly understand how it feels.

There is nothing worse than a parent losing their child.

Like most parents, I wake up every day trying to make sure that doesn’t happen.

I have the extra burden of keeping my son away from food that can kill him. Food that surrounds him, like ticking time bombs.

I am there to try to find and detonate each one. I am there to slowly teach him how to do this himself.

But he is only 6 now. This will take some time.

He must live with life threatening food allergies to all nuts. His allergist said that it is doubtful he will outgrow it, and that he is too allergic to qualify for the new treatments out there.

I often read tragic stories of children dying from food allergies. I pray that my son won’t be one of them. I often read stories of children being bullied for having food allergies. I hope that my son won’t be one of them. I hear cruel jokes in the media about kids/people with food allergies. I hope my son will be strong enough to deal with such heartless people.

I hope he will grow up to be a kind, thoughtful man. The way so many people with disabilities, or so many who care for those with disabilities often do. They know what it is like to face tough times. They know what it is like to climb mountains that often feel insurmountable.

They are the best, most considerate people I know.

We are still hopeful for a cure. But for now we must walk this minefield of a life, and hope he gets to live his wonderful life for as long as possible.

He has the disabilities of food allergies and asthma. And like many others with disabilities, hidden or not, he requires some help, understanding and lots of love.

All children deserve this. Let’s make sure they get it. Let’s make sure we teach our children how to survive, thrive and show compassion.

My mind often goes back to that night I almost lost him. I know that what happened to him could happen again if he eats something containing his allergen, and/or if he has a bad asthma attack.

I will never forget that look on his face.

I just want my baby boy to come home safe.