A Food Allergy Mom’s Dream

I lay 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 okay.

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 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 are 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 are 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 the bullies (adult and child) that they may encounter in person or online.

It is a battle I wish we did not face. It is a battle that I wish none of you will face. But, the reality is that many of you will someday. One in thirteen children currently have food allergies. It is a growing epidemic. One we all need to participate in and be prepared for.

Even with the prevalence of food allergies, many still do not understand the dangers involved, or do not even care to try to.

Because it does not affect them.

Many people do not realize that many kids/people are dying from this. Many kids/people are being rushed to the hospital every single day due to food allergies.

Many still view food allergies as something that is okay to make jokes about. They ridicule those afflicted, or even bully children or the parents of kids who suffer. Food allergies are a hidden disability that affect a person’s ability to eat, drink, breathe, thrive and survive. It is 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 nuts on airplanes and at events/parties, 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 as to how to stay safe. As I prepare to have surgery, I pray that I will get more time to continue that education. I pray that I will be able to supply them with enough knowledge to lead healthy, productive and happy lives.

I also hope that 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 to any parents handling any type of disability or struggle.

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

Lead by example.

Do not 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 that we are all in this together. We are all struggling with something.

As I prepare to have surgery, I pray that this message will reach many.

I pray that my children will survive and thrive no matter what happens.

I pray that I will be okay and wake up from anesthesia to a more tolerant and humane world.

Please help this dream become a reality.

 

There’s No Place Like a Food Allergy Community

The week of May 14th – May 20th is Food Allergy Awareness Week. There is no better week to express my thanks to the food allergy community and all the wonderful people who support them/us. Please help me by sharing this letter with anyone you know who has food allergies, or with anyone who has helped you in your food allergy journey. Let’s spread thanks, let’s spread awareness:

To all involved in the food allergy community:

I discovered that I had life-threatening food allergies after eating a huge plate of shrimp scampi. I was 28 and had eaten shellfish my whole life. Until this point, I was fine. Then I wasn’t. I haven’t eaten shellfish since.

Despite all of this, I did not become a full-fledged, all-in, member of your community until my 4 year old son reacted after eating pecan brownies. I knew a little about food allergies and about how deadly then can be, but nothing can prepare you for seeing your small child react. As his hives increased, so did my panic. After he threw up, we knew he must get to a hospital fast.

I was one of the lucky ones, I survived my anaphylactic event. So did my son.

Would we be so lucky next time? IF there is a next time? 

If only I had a crystal ball.

That’s where all of you came in. I sought advice from friends on Facebook right away. I was desperate and needed answers fast. I wanted to know what I could feed my son safely before his allergist appointment which was weeks away.

You certainly came through. You pointed me to the Food Allergy Research and Education website, and to a few wonderful Facebook groups for food allergies such as No Nuts Moms Support Group.

Thanks to your input and knowledge I was able to find these resources and do a lot of reading. I was able to ask a lot of questions about being a beginner mom of a child with food allergies.

I was able to start my long journey down the teal brick road. But I was no longer alone. I had some friends with me. Some friends who had more brains than thousands of scarecrows with a degree, more courage than a hundred fierce lions, and more heart than the most loving tin man in the world.

I took my first steps with trepidation. I had a lot on my mind, I had a son to protect and a Wizard to find. I found some safe lollipops via the Spangler Candy Company. They would be the envy of the Lollipop Guild, and they welcomed us into Food Allergy Land. Then I found some great books, and some nice Kyle Dine tunes that would help my little boy have sweet dreams just like the Lullaby League.

Some lovely women/people on the net act as kind Fairy Godmothers, they are as generous as Glinda, and offer so many words of wisdom. They helped me keep on the right road, they steered me away from the flying monkeys.

The road of a food allergy mom/family is full of struggles, it is never easy. You taught me how to call companies to make sure the food my son consumes is safe, because each company is the horse of a different color. Each of them operate differently, each of them follow their own rules. You taught me to never leave home without our EpiPens or auto-injectors.

From time to time I encounter some wicked witches. The types of people who do not try to understand, or who refuse to acknowledge the fact that people are dying from food allergies. These people are a part of the haunted forest, they taunt you, they mock you, they care nothing about keeping our children safe. Some have said that peanut butter sandwiches, or nuts on planes are worth more than my child’s life, or that he is not meant to survive if a mere nut could take him out. Almira Gulch has nothing on these people, and they are swept up in a tornado of hate. I can only hope and pray that they do not get food allergies, and that they may see the light someday. May this light pour some water over the witch, and throw the broom into a ditch.

You help me gain peace and balance after such unpleasant encounters.

You are my rainbow.

I thank you for all the information you have given me, for all the tears, for all the smiles, for the bond that only food allergy families understand. I also want to thank those family members, educators and friends who are a part of our community and everyday lives. You care so much about us and our children. You walk this road with us voluntarily. There are no better people than you.

You have helped me keep my son safe for over a year now. There is no way I can ever repay you or thank you enough.

You are always in my thoughts and prayers. You are all in my Hall of Fame.

There’s no place like a Food Allergy Community.

There’s no one like you.

Thank you for making my skies blue again….

ryan great wolf lodge lollipop couch

 

avatar

You can find more information here:

https://www.foodallergy.org/

https://www.facebook.com/nonutsmomsgroup

http://www.kyledine.com/

http://www.kidswithfoodallergies.org/

http://www.foodallergyawareness.org/

 

 

I Was a St. Paddy’s Day Failure Yesterday

I was a St. Paddy’s Day failure yesterday. I imagined a hash and egg Irish breakfast, corned beef or ham and cabbage with potatoes, parades, Irish music, making vanilla cupcakes with green frosting, and watching Darby O’Gill & The Little People.

I did not check anything off the above list!

The only thing I pulled off was having the whole family wear green shirts. This photo is of my 2 kids.

I slept late, took my family to a restaurant that didn’t even serve corned beef or play any Irish music, and failed to make or find a safe dessert for my son with food allergies. But we did have a Happy St. Paddy’s Day toast with milk & apple juice! 🙂

I was a disgrace to my Irish ancestry & spirit of revelry, so when I got home I made up for it by toasting my failure with some Bailey’s Irish Cream.

I quickly forgave myself after a few sips, and began dreaming about how next year I’ll be the Martha Stewart of St. Paddy’s Day.

Oh, now that’s some Blarney!

Kathy
Nuts About My Partially Irish Son & Family

O’Poetologie

To All Moms of Children with Disabilities- Hidden or Not

You will never forget the moment you became a mom. A soft and tender child was placed upon your breast. Your beautiful baby was finally here, after many long months. He/she struggled to look at you with out of focus eyes. But what they saw was unmistakable to them.

It was you.

Their glorious mom.They immediately felt safe in your arms. They longed for the smell of you, they longed to hear your voice. They were in love.

Your heart grew exponentially that day. It continues to grow. You touched their delicate hands, and felt their tiny fingers try to wrap around your big hands. You felt love flow through you like big electric shocks.

A mom was born that day as much as a child. You loved this tiny baby more than you loved yourself. You knew right then that you would do anything to keep them safe and happy.

The moments turned into memories. You felt the rapid passage of time.

You will also never forget the day you got the diagnosis of their disability. No matter what it was, you felt a little shocked and scared. Your world would change, but your love would never falter. You would handle any changes or new challenges with as much strength and courage as you could muster.

You educated yourself quickly. You felt empowered slowly but surely. You tread lightly on some days. You soldiered on powerfully on others.

You cried yourself to sleep on some days. You cried tears of joy on many others.

Your child never knew the difference because you were you, and they were their wonderful selves. The bond of love had not changed and will never change.

This love will follow them around throughout their whole life. It will help them face certain struggles. It will help them carry on. It will comfort them when they have a rough day, it will be a warm blanket when they feel the world’s coldness.

You wish they would never face adversity, but know that they will face it more than many others. You help guide them and prepare them to take on the world. You may make progress one day, then take two steps back another. You know that you are still both going in the right direction. You will figure it out. You won’t give up until you do.

There will be days you feel like a complete failure. But you will not let your child see that reflection, because you know it’s not reality. It’s just a temporary countenance. It will be gone tomorrow. And if/when it rears its ugly head again, you will conquer it once more.

You are grateful for every tomorrow with your amazing child. They may have a disability, but you have given them the ability to thrive, and to live a completely wonderful, fulfilled life. You have given them the ability to see others as equals, to show compassion and kindness.

They are your greatest gift, and you wouldn’t trade them for the world. You are so proud of everything they do. They have come so far, and you can’t wait to see where they will go, and what they will achieve.

You are doing a great job.

You are their mom, and they are so lucky to have you.

They are no longer babies.

Their eyes are now in focus, and they will always reflect the love you have shown them.

The love that turns a disability into an ability. A moment of fear into an act of bravery. A deep love of a child, into a strong love of self.

I long for the day when everyone can feel this kind of love.

Then maybe there will not be so many barriers, stares or shrugs of indifference.

There will only be people.

There will only be love.

Kathy ❤

Nuts About my Son

Poetologie

 

 

 

 

Valentine’s Day Food Allergy Blessing

Valentine’s Day Food Allergy Blessing

I had tears in my eyes, and lots of smiles,
when I just dropped you off at school;
for it seems just like yesterday,
that I was carrying you.

My sweet baby, my little child,
you crawled, but now you run;
to see all that lies ahead of you,
before the setting sun.

But you must tread carefully,
and remember what I’ve taught you;
about your food allergies,
that’ll follow you your whole life through.

Don’t you worry, don’t you fret,
you have a wonderful life in store;
you are smart, kind and silly too,
and I couldn’t ask for more.

You are my special Valentine,
and my heart will only grow;
each time I get that special hug,
that only a food allergy mom knows.

I hope you know how special you are,
and believe that this is true;
I feel the meaning of #teallove,
every time I glance at you.

May your journey, be safe and blessed,
with more beauty than your eyes can see;
my little child, my Valentine,
you are always a part of me.

Kathy
Nuts About My Son
Poetologie

tealLoveHeart

Through Your Eyes

I have written poetry my whole life. It just comes naturally to me and is a great way to cope with many issues I deal with, including medical ones. It is a good distraction from the pain and anxiety I face daily due to Interstitial Cystitis, Asthma, PMDD, Fibromyalgia and Lyme Disease.

When my son was diagnosed with food allergies in December of 2014, I was already overwhelmed with struggles and worries. I felt like my head was going to explode after his diagnosis. I have food allergies too, but got them later in life and didn’t take them seriously enough. Since he is a young child, I had to do much research and preparation to keep him safe. This work never ends, for environments and food products are changing daily.

One of the things I was unprepared for is how nasty and mean some people can be when those in our community mention that their children have food allergies. We have to work hard every single day to keep our children alive and the work never ends. We are not trying to inconvenience anyone, we want our children to survive. I even read one comment that said something like maybe your child should just die and succumb to natural selection! I never imagined the hate speech, rolled eyes and or apathy I/we would face. It made me really sad for my son and for humanity.

So I wrote a poem about it. One of many. These poems make me feel better, and I hope someday will comfort or empower my son. I want to teach him that he matters and is not a burden. He is a blessing. He is loved, and this is true no matter what anyone else says.

Here is my poem. I wrote it about food allergies, but it is really about anyone with an illness, condition or disability.

You are all wonderful. You are all strong. You all matter too.

Let’s all try to work harder to see things through each other’s eyes. Let’s all try each day to be someone we are proud to look in the mirror at.

 

Through Your Eyes

I looked in the mirror today,
with my sparkling eyes of blue;
I saw a little boy with food allergies,
who is blessed despite this news.
For it makes me more compassionate and kind,
to those who have struggles too;
I liked what I saw today,
but can’t say the same for you.
Your cruel comments about food allergies,
will hurt a young child like me;
your child may grow up to be a bully,
because it’s through your eyes they see.
So watch what you do and say,
for you haven’t walked in everyone’s shoes;
I liked what I saw in the mirror today,
Can you honestly say you do too?
Kathy ❤
Nuts About My Son
Poetologie

 

 

Why I Started my #teallove Food Allergy Awareness Campaign

My son was diagnosed with life-threatening food allergies at the age of four. I started a Facebook page called “Nuts About My Son” in order to keep track of my food allergy research, my son’s progress, and my emotions.

It was like a emotional roller coaster the first few months post diagnosis. This past weekend I was thinking about how far I’ve come, and how I’ve done a pretty good job of keeping my son safe. My thoughts rolled around to Valentine’s Day 2016, his second one with food allergies, and that’s when I came up with my #teallove hashtag and food allergy awareness campaign. I try to advocate for those with food allergies in my free time, and I write poetry and blogs about it, create memes, tweet, use instagram, and sell some products to raise awareness and empower my son/family. I want to make a difference, in whatever small ways I can.

What is teal love?

Teal love is what a food allergy mom feels for her child. She will do anything to protect them. She often faces many difficult situations, doctors appointments and sleepless nights. She loves her child with all her heart.

Teal love starts with a KISS:

  • Kindness
  • Inclusion
  • Show compassion
  • Show Empathy

We must teach others what #teallove means, especially our children. They will inherit the Earth, they must be taught what it means to show compassion and empathy toward others, especially those with food allergies or disabilities.

Teal is the color of food allergy awareness, and it appears in many food allergy families homes. Whether it’s on clothing, bracelets or jewelry, we wear it with pride. It makes us feel stronger. It prepares us for what lies ahead.

Valentine’s Day is like a second Halloween for food allergy families. That is why I chose to start this campaign now. There is much preparation and fear involved due to candy/treats being around more than usual, whether it’s at school, practice, church, daycare, parties or after school activities.

We must meet with all of our children’s teachers and caretakers just like we do before Halloween. We have to set boundaries, and make sure that safe candy/treats are at each celebration if applicable. Many places are choosing to hold food-free celebrations to make sure all kids are safe and included.

I didn’t worry about my son’s safety, or his feelings, as much last year since he wasn’t in school yet. I was able to order him some safe candy from Vermont Nut Free (a company founded by a mom of a young child with food allergies.) I made some safe cookies and cupcakes for him and the whole family, and all was well.

This year is different since he is in school, and for countless moms of children with food allergies, this holiday, like many others, brings about fear and some dread. We have to spend countless hours baking, whether we are good at it or not. We have to worry about what food the other families will send into school. Food that can harm or kill our children.

We never used to think this way. We spent many years enjoying Valentine’s Day and the chocolate decadence. But when you know food or candy can kill your child, you look at it much differently. You have no choice.

Chocolate covered peanuts or hazelnuts, look like poison to us and could be the kiss of death for our children. We have learned that not only eating them can cause harm, but also cross contamination at the factory, or residue from these products.

What we all once loved, is now a dreaded sight. We relentlessly search to find safe Halloween and Valentine’s Day candy, but it is few and far between. If we are lucky, the local CVS or Target may have a few things, but we cannot just grab some choices carefree. Those days are gone. We must do extensive research online, call the companies and read every single label.

These holidays can sometimes seem more like a chore than an act of love. But, what an act of love it is. It is no longer a quick trip to the store. It is like a carefully orchestrated symphony. A symphony we perform to the best of our ability, in order for our precious children to enjoy each morsel of safe treats, or each special non-food toy/craft.

It is what we do everyday for our children with food allergies. It is what we will always do. It is what we must do.

It’s #teallove………

Kathy ❤

Nuts About My Son

teal love fa mom meme