The Isolation of Food Allergies

The Isolation of Food Allergies

Food allergies isolate children and their families.  That’s the truth.  It’s painful, difficult and defeating all in the same moment.  Those are pretty powerful emotions for a child or adult to feel in one concentrated burst, often daily.  Children with food allergies have a difficult time participating in all the activities that other children take for granted.  Fun childhood experiences like trick or treating, birthday parties, summer camps, Easter egg hunts, Vacation Bible School, and pizza parties at school are not carefree fun for children with food allergies.

They always have to be on alert, keeping their guard up for whatever their poison is: peanuts, tree nuts, dairy, egg, soy, fish, shellfish, wheat and a myriad of other foods.

Be aware that what is an American classic treat, ice cream, could be death for some.  We consider our allergens poison because we know they can kill us.  It’s hard to get excited about an ice cream party when ice cream is your worst nightmare.  Seeing your siblings get excited to have the food that could kill you is a lonely place to be.

And it’s not just the person with food allergies that feels isolated.  It’s the entire family.  It’s the Mom or Dad of a food allergy child that has to be persistent and aggressive to keep her/his child safe, often to the point of losing friends or being shunned because we are a little “crazy about food allergies.”  It’s also the brother or sister of a food allergy child that unfortunately has to skip events, sacrificially, because it’s not safe for the entire family.  Who wants to leave their sibling behind, sad and left out, while you go enjoy the party?  It’s also the grandparents that have to constantly be alert when their food allergic grandchild is around, upsetting some because of the restrictions that must be in place for the child.  Traditions sometimes have to be broken: “Sorry, can’t have boiled peanuts this year at our gathering!”

There is a constant, underlying level of anxiety present when you have food allergies.  Social norms are not the norm for us. We are different.  We are mocked.  We are bullied.  We are talked about.  How could you not have anxiety when the same food that the world is in love with could kill you?  The same food that parties are planned around causes a violent reaction in your body with just a trace.  You give up so much that others take for granted.  There’s no denying the loneliness of food allergies.  So many people just don’t understand and don’t even care to.

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But don’t give up hope just yet!  There are people that care, that want to help.  Cherish them, thank them, return their kindness every chance you get.  There are angels that were once bound by food allergies that are now free from that pain and are watching over us.  Food allergy kids and adults are resilient.  They live through tough days and still smile.  They appreciate small acts of kindness with more depth than many.  When so many people ignore their plight, the one that shows concern erases away the ones that don’t.  It’s the kind of “special” one feels when Jesus leaves the 99 to recover you, the one lost sheep.

Loved, important, wanted.

 

“What do you think?  If a man has a hundred sheep, and one of them has gone astray, does he not leave the ninety-nine on the mountains and go in search of the one that went astray?  And if he finds it, truly I say to you, he rejoices over it more than over the ninety-nine that never went astray.  So it is not the will of my Father who is in heaven that one of these little ones should perish.”  Matthew 18:12-14

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5 Things to Ask a Food Allergy Parent

5 Things to Ask a Food Allergy Parent

Befriending a food allergy family can be tough at first.  You’re never really sure how to talk to the parent about their child’s food allergies.  How do you ask questions without sounding uninformed or insensitive?

Well, most food allergy families don’t expect you to know much about food allergies.  They would love for you to show interest in learning more, for their child’s sake.  Short of reading fifty books and doing months of research, the food allergy parent or food allergy sufferer is your best resource for reliable information on food allergies.  As a food allergy parent, we wish more people would just start asking questions, show interest in knowing about our child’s struggles with food, and be accepting and respectful of the ‘food safety operational plan’ for our family.

Here are the five questions I wish people would ask me to learn more about my son & his food struggles:

What are your child’s allergies?

A basic understanding of what my child is allergic to is the first component to understanding the entire problem, especially when the child has multiple allergies.  Things get more complicated the more food allergies a child suffers from.  A lot of people can wrap their head around a peanut allergy, but when you add dairy and egg, safety becomes more difficult to attain.  To food allergy parents, a child’s food allergies are part of the description of their child, just like their age, eye & hair color.  It’s more important to me that you know my child’s food allergies than his age, as strange as that may sound to some…

What common foods do you have to avoid because of his allergies?

This question opens the door to understanding what is not safe for my child to have.  When you start to understand that my child cannot have almost all common kid’s snacks, you begin to realize how dangerous it can be for my child to be around other kids during such an innocent thing as snack time…or birthday parties…or playgrounds where children snack while playing.  My food allergic son has only had one peanut butter and jelly sandwich and it nearly killed him.  That’s a classic American kid food that he doesn’t eat.  Most people take that go-to lunch box food for granted.  Some parents say their kids won’t eat anything else.  My oldest son used to eat PB&J frequently.  Not anymore…

What specific foods are safe for your child to have?

Inquiring about safe foods allows the food allergy parent to tell you what foods their child CAN have.  What a nice change to talk about foods my son can enjoy as opposed to what he can’t have.  I usually opt to provide all food for my son wherever he goes but there are a select few that I trust understand his allergies and can provide safe food for him.

What can we do to make your child more included?

Oh, what a wonderful word-included!  Just ask and we will joyfully answer.  There’s always a way to make a food allergy child feel included.  Offer toy treats instead of food treats.  Play games, draw pictures, listen to music…do things that center around activity instead of eating.

How do you handle accidental ingestion of foods your child is allergic to?  What would I need to do in the event that occurs?

Transition the conversation from prevention & inclusion to reaction.  Knowing what foods to avoid is vitally important but knowing how to handle an allergic reaction is equally important.  Being prepared to handle the possibility of accidental ingestion of an allergen is imperative.  Showing that you care enough to ask what to do is monumental to a food allergy parent.  I promise, we can whip out an emergency action plan or recite it from memory at any given moment.

This is all a part of our daily lives.  Most people don’t want to be bothered with the details of our reality, much less take on the burden.  Showing a food allergy family that you care enough to learn more is like throwing out a life preserver to someone who has fallen off the ship into the middle of a storming ocean.  That simple act of kindness and compassion will not be overlooked.

“Bear one another’s burdens.” Galatians 6:2

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Brothers & Sisters in Heaven

Brothers & Sisters in Heaven

My children know one day they will get to meet their brothers and/or sisters in heaven.  My husband and I know one day we will meet those babies we never got to kiss here on earth.  We never got to welcome them home.  We never got to name them or set up their nursery or see their faces.  The love for your children, even those you never get to meet on earth, does not diminish over time.  That love is still growing inside you, just as it would if the child was growing up in front of you.

There are so many things about heaven that I’m looking forward to.  Meeting my children is one of the big ones.

When you lose a child, those that may have never experienced that kind of loss don’t understand your pain.  There is no time limit on your grief.  I still grieve the loss of those babies, years later.  Yes, God has filled my sorrow with the blessing of children here on earth.  But I still miss my babies that aren’t here.

“For it was you who created my inward parts; you knit me together in my mother’s womb.”  Psalm 139:13

God created those children for a purpose, for a reason.  I can only imagine the awesome things God has them doing.  That gives me comfort.  They are in the constant presence of their Savior.  They are better off than me.

One day, they will be teaching me a thing or two.  They can “teach me the ropes” when I get there.  I cant’ wait to kiss their sweet faces, as they welcome me home.

For my fellow parents who grieve on a daily basis, who lost their child before they ever met them, who held their babies for only a short time here on earth, keep your hope.  They are not gone forever.

Pregnancy and Infant Loss Awareness month is October.  The pain of losing a child is real; don’t dismiss it.  Comfort those around you that have experienced this kind of crippling loss.

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Navigating Minefields

Navigating Minefields

Imagine you walk into a room at one of your favorite places, maybe a restaurant in which you’ve enjoyed many meals or a park at which you’ve spent many afternoons daydreaming.  You notice that this time your favorite place is different.  Something feels off…it feels dangerous.  You look around trying to identify what is different.  You can’t tell at first but soon you start to see it…a minefield of explosives.

Most people would run in the other direction.  You’d have to be crazy to walk into a minefield, right?

Yet, this is exactly what those with food allergies face every time they go to a public place.  A minefield.

Now, imagine that it’s not you walking into your favorite place that is now so extremely dangerous…but it’s your child.  Your sweet, innocent child that is not prepared to identify dangerous situations as an adult would.

Think of this place as a park with a playground.  What was once a place to have fun and “be a kid” is now filled with explosives for your food allergic child.  Innocent, unaware children are walking around eating a PB&J sandwich, wiping it off their face and then touching the slide that your child is about to go down.  Never-mind that there is a picnic table nearby, the parent isn’t paying attention and the child is roaming around eating.  Another child is running around with their sippy cup of milk, dripping it on the playground equipment.  Your child has a life-threatening allergy to all of these foods that are now all over the playground.  This place is no longer fun.  It is dangerous.

Do you steal your child’s experiences of “being a kid” to keep them safe?  Do you take them to the minefield and hope for the best?  How do you handle this situation?  It’s one that food allergy families face daily.

Until you come face to face with the fact that the same food that is considered healthy for some will in fact kill your child, you might not be able to imagine the dangers present in everyday life.

Until you’ve had to witness your child struggle to breath, scratch their tongue vigorously with both hands, look into your eyes with a primal fear, vomit and go limp….all from one bite or drink of the wrong food, you might not understand why it’s so important to prevent exposure.  Until you’ve feared that one epi-pen jr isn’t enough to stop the anaphylactic response in your child, you might not understand why it’s so important to prevent exposure.  Until the hospital nurse has told you they have called the chaplain to come speak to you, you might not understand why it’s so important to prevent exposure.

Let me explain this clearly: it is CRUCIAL to prevent exposure.

Each anaphylactic response can become more rapid and deadly with each occurrence.  It’s as if the body’s response gets stronger each time.  The best way to prevent quicker, stronger anaphylaxis is to avoid exposure altogether.  It’s not as simple as just giving an epi-pen.  Sometimes they don’t work.  Sometimes it’s too late to stop the anaphylactic shock.  Sometimes the child does not see the other side of anaphylaxis.  It is a sobering truth that many need to hear.

“Love your neighbor as yourself.” Matthew 22:39

Food allergies have become a punchline to some, a weapon to bullies and death to it’s victims.  More concern, love and sympathy for each other would make all of our burdens easier to bear.  And maybe just a little safer for those who need to be loved and protected.

 

RVin’ It With Food Allergies

RVin’ It With Food Allergies
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There are many reasons why I love my RV.  Family fun, campfires, vacation home on wheels, less packing and unpacking, versatility…

But the number one reason I love my RV is how easy it makes traveling with food allergies.

My family loves to travel, make memories, experience new places and enjoy adventure.  All of those things became a little more difficult to experience when our youngest of four children was diagnosed with life-threatening food allergies at the age of 1.  Many aspects of our life changed and traveling was one of them.  We could no long take spur of the moment weekend trips and keep our son safe.

Food allergy management requires serious planning.  Planning what to eat, how to cook, how to keep food fresh and our son safe.  We couldn’t just eat out the entire weekend.  With food allergies of peanuts, tree nuts, dairy, egg, corn and wheat, eating out was and is dangerous.  The risk of cross-contamination is extremely high, even if a food is “free” of his allergens.  We had to find a way…adventure is just part of our family’s heartbeat.

Within a year after his diagnosis, we decided to purchase a used RV.  It was like a gift from God.  We could travel safely again.

We have 100% control of what enters our camper.  We can cook his allergen free food in a safe kitchen.  We can ensure he eats off a clean table (not always possible in a restaurant).  We don’t have to stay in a hotel room that may have sketchy cleaning between guests (who may have eaten and dropped peanuts just hours before you check in).  We can rest assured that he is safe, even when we travel.

It’s opened so many doors for our family.  We can go places and have adventures.  We come back to the camper to prepare and eat meals, where it’s safe.  We can connect as a family.  We can include our son in what we, as a family, had been experiencing before his diagnosis.

If you are a food allergy family, then you know, there is no better feeling then for your food allergic child to be included.  There are so many experiences that your child is excluded from, for safety reasons.  “You can’t have that, baby,” is a phrase your child hears a lot.  And it’s not about the toy at the store.  It’s about the food his sister is eating.  Or the birthday cake at a party that everyone else is so excited to try.  Or the buttered popcorn at the movie theater that everyone else is munching on.

It’s nice to make you child feel normal and included.  The RV has done that for this food allergy family.  And I thank God for it!

“I can do all things through him who strengthens me.” Philippians 4:13

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No Peanut Is Welcome In My Home

I said goodbye to my love affair with peanuts over 2 years ago.  No more Reece’s cups, no more Snickers peanut butter squared, no more boiled peanuts, no more PB&J.  I haven’t looked back since.

Snapseed

No, I’m not allergic to peanuts.  My son is.  You see, if I eat a Reece’s cup (a lifetime favorite treat for me), I can’t get near my son for hours.  No kisses, no cuddles.  Protein from the peanut stays in saliva for hours after consumption.  I had to kiss my love affair with peanuts goodbye or I couldn’t kiss my son.  I love peanut stuff but I love my son more.

This wasn’t an easy obsession to break.  Peanut in some form or another was part of my daily routine.  If I was eating healthy (usually lasting a day or two), I would eat peanuts with cheese.  If I was eating unhealthy (the other 28 or 29 days of the month), I would eat a peanut butter candy of some sort, usually a Reece’s cup.  I started out by refraining from eating peanuts while I was around my son.  I could eat peanut products at work, as long as it was several hours before I had to pick up my son from daycare.

But then one day the daycare called and my son was sick.  I had to pick him up just after I’d eaten peanut candy.  Mommy fail.

So then, I just stopped eating peanuts altogether.  It just wasn’t worth the risk.  My son is severely allergic to even traces of peanuts.  Once, my Dad had eaten peanuts several hours before giving my son a hug.  As they hugged, their cheeks touched.  My Dad had a beard that apparently still had traces of peanut “dust” in it from his earlier consumption.  My son’s face immediately starting swelling and turning red, just from traces of peanut dust in my Dad’s beard.  Crazy!

Of coarse, we cleaned out the pantry of any peanut contaminated food as soon as we discovered my son’s allergy.  My other children and myself stopped eating peanut products over 2 years ago.  I’m pretty sure my husband hasn’t completely broken up with Reece’s cups while at work…but still,

No peanut is welcome in my home!

Trick or Treat: Candy My Kid Can’t Eat

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Costumes, candy, and crisis.

Wait, crisis??

Well, it could be crisis for children with food allergies.  A night filled with excitement, imagination and candy treats is awesome for most kids but can be a nightmare for kids with food allergies.  Most candy treats just aren’t safe for them to eat.  Parents can’t read the labels of the candy to verify their safety, so the candy is taken away…that is, if the kid even gets to trick or treat.  Bummer.

One in thirteen children in the U.S. has food allergies, according to recent studies.  It’s time we take notice.  It’s time we include them.  Holidays are especially difficult for food allergy families due to the centrality of food at holiday celebrations.  No one wants to end up at the hospital on a holiday.

There is a way to make this a fun filled night for food allergy kids.  The Teal Pumpkin Project was created to include *not exclude* children with food allergies.  It’s pretty simple.  You just display a teal pumpkin outside your door to alert food allergy families that you have non-food treats.  Easy, inexpensive items to purchase are plastic spider rings, pencils, little rubber bouncy balls, etc.  Dollar Tree and Oriental Express are great places to purchase these treats affordably.  And here’s an important tip-keep them in a bowl separate from the candy you offer other kids to avoid any cross contamination.

You can purchase a plastic teal pumpkin to use year after year, or just paint your orange pumpkin teal.  It’s a fun project with the kids.  Use that opportunity to educate your children about food allergies and food safety.  Who knows, maybe one day they will save their friend’s life.

Thanks for reading and thanks for supporting children with food allergies!

“Act justly, love faithfulness, walk humbly with your God.” Micah 6:8

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