Seeing Light in the Dark

Seeing Light in the Dark

Why do children suffer with life-threatening food allergies?  What’s the purpose, the reason, the big picture?  Why does my son have to deal with this?  Why does my whole family have to deal with this?

The ‘why’ questions can drive you straight to insanity if you linger there too long.  The truth is that we may never know the reasons why our children are suffering from food allergies.  The question we should ponder is what can we learn through this struggle.  There are blessings in the trials.  We just have to open our eyes to the blessings and stay out of the pit of anger.

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“Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble.” 1 Peter 3:8

One blessing our family has experienced is unity.  Because one person cannot solely carry the weight of keeping our son safe, the entire family carries it together.  We have become a team, a safety net woven together with love.  Sometimes, it takes hardships to weave a beautiful tapestry.

We have learned to trust in God’s plan.  This is not an easy road.  We traveled down the path of anger, sorrow, pleading for a cure, and even denial.  We found dead ends at every one of those paths.  God nudged us down the hard road of faith.  He has been teaching us all along the way that we must trust in His plan.  There is no other option that gives us peace.  Anger, sorrow, denial all left us with turmoil inside.  Faith, though it is sometimes difficult to keep, is the only road that leads to peace.

“For my thoughts are not your thoughts, neither are your ways may ways, declares the Lord.”  Isaiah 55:8

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Looking at the blessings and focusing on gratefulness has left our family with more peace and encouragement than we could have imagined was possible at the beginning of this food allergy journey.  We may not understand the whys of the weight we carry but what we can understand is the blessings.  Focus on the positives, the gifts, and the blessings.  You will see the world with a brighter light than before.  This is my prayer for you-to seek the Lord in your trials and find your faith in Him.

“Rejoice in the Lord always.  I will say it again: Rejoice!  Let your graciousness be known to everyone.  The Lord is near.  Don’t worry about anything, but in everything, through prayer and petition with thanksgiving, present your requests to God.  And the peace of God, which surpasses all understanding, will guard your hearts and minds in Christ Jesus.” Philippians 4: 4-7

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Dangerous Kisses

Dangerous Kisses

Valentine’s Day is an entire day set aside for expressing your love for others.  It’s a day of showing appreciation, love, and sometimes a little romance.  For twenty-four hours, we set out to spread happiness and cheer in the lives of our loved ones.  What could be bad about that?

For someone with food allergies, any day could be threatening but Valentine’s Day could be deadly.  As people with food allergies, we live in a world filled with the foods that could hurt us, even kill us.  We encounter them everywhere we go.  We take drastic measures to keep ourselves safe and free from exposure to those dangerous foods.  But on a day made for sharing, safety can be more elusive.  Sharing can be deadly for us.

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Kisses, for one thing, can be extremely risky.  How so?  Food allergens can stay in saliva for hours.  Our digestive system starts in the mouth, when we take the first bite of food.  The saliva moistens the food while the teeth break down the food into smaller pieces.  Those tiny pieces of food allergens can remain in saliva for hours.  Rinsing your mouth, brushing your teeth, and chewing gum are actions that can help remove the food allergen proteins more quickly, but they are not fail-proof.  Food can be trapped between teeth and in braces or other orthodontic equipment, causing the food allergen proteins to be present in saliva for extended amounts of time.

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Saliva is not the only carrier of food allergens.  Facial hair such as mustaches, and the currently popular full beard, can carry traces of food allergens too.  My husband, who has a beard, came home from work one day and kissed our four-year-old son on the cheek.  Our son’s cheek immediately started swelling and turning an intense red.  I asked my husband what he had eaten earlier in the day and he responded that he had eaten peanut butter crackers earlier that morning, but that he had rinsed his mouth out and washed his face immediately after consumption.  That was eight hours prior to kissing our son on the cheek.  Our son is extremely allergic to peanuts.  With this in mind, my husband took extra precautions after consuming peanut products.  Most times, that is enough.  Unfortunately, sometimes, it is not.  Studies have shown that transmission of food allergy proteins through saliva has resulted in anaphylaxis.  Thankfully, the contact reaction was the full extent of my son’s reaction that day.  It was an eye-opening experience for both my husband and I.

Sharing utensils, cups, and straws can also be dangerous for those with food allergies.  Buffets and pot-lucks make us cringe.  All the shared spoons, forks, and tongs have anaphylaxis written all over them.  Sharing, in these instances, is just not safe.  Skip the fondue date this year for a more allergy friendly meal.

How about this Valentine’s Day, we celebrate love with a little different approach?  Share kindness, not food.  Acts of kindness go a long way!  If you must buy a gift, instead of the traditional gift of the variety box of chocolates, give a book.  You can’t go wrong with a book, right?  Well, I may be a little biased.  I am a writer, after all.  But seriously, you can never have too many books.

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If you must share kisses, be sure they are “safe.”  Happy Valentine’s Day! Be kind and be safe!

Snow Skiing Rescued Us From the Food Allergy Winter Blues

Snow Skiing Rescued Us From the Food Allergy Winter Blues

Winter is a tough season for our food allergy family.  Coming off the heels of multiple food-centered celebrations, we are literally exhausted.  Tremendous planning, safe proofing, and stress are all a part of the holiday season.  We traveled through Thanksgiving, Christmas, New Year’s with flying (allergic reaction-free) colors only to land at two upcoming food-centered celebrations: Superbowl Sunday and Valentine’s Day.  With only a few weeks of breathing room between the two seasons, our family needed a break!

My amazing extended family invited us to go snow skiing.  I grew up skiing every year but it had been over twenty years since I’d hit the slopes.  None of my four children had ever been before.  With ages ranging from 4 to 16 years old,  they were all eager to learn to ski and snowboard.  I was a little apprehensive at first, as I always am when we encounter a new and unfamiliar environment in which I have to assess the dangers for my son with severe food allergies, but we were up for the adventure.  And we needed it.

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Between private snow boarding lessons for the oldest and ski school for the younger three, they all took to it quickly!  The lovely thing about ski school was that they fed them nothing.  NOTHING.  That is heavenly music to a food allergy mom’s ears.  Just heavenly.  I didn’t have to worry about what they were feeding my son or what the other children were eating that my son may be allergic to.  I almost cried when they told me there was no food served.  I was able to ski the slopes, only worrying about the normal parent stuff but not the food allergy stuff!  Of coarse, I was never more than a few minutes away from their location, but on this day, I was not hovering.

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Thank you Appalachian Ski School for handing the children back to their parents for a one and a half hour break for lunch.  Thank you for starting ski school at 10 am.  Thank you for ending ski school at 3:30 pm.  Thank you for arranging the day so that parents could feed their children snacks and lunch so that you did not need to.  Praise God my son could learn to ski without the usual worry about food.  And I could ski too.  I treasured every second.  It was relaxing and exhilarating all at the same time.  You food allergy parents out there know what I mean.

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My children learned a skill that will stick with them for life.  They learned it together.  They learned it safely.  We were all able to appreciate the beauty of God’s artwork and the natural playground He created for us.  Now that’s a family vacation!  We all needed a little break.  It was just the refreshment necessary to keep us pushing forward.

“For they refreshed my spirit and yours also.  Such men deserve recognition.”    1 Corinthians 16:18 

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A Day In The Life…

A Day In The Life…

Fundraisers often involve 5K runs or being held in “jail” until you raise enough funds to be released.  Recently, I came across a fundraiser (the Top 10 Challenge) for food allergy research funding that was quite different.  Instead of the usual 5K, the participant is to avoid food allergens for one meal or for one day.  Sponsors contribute monetarily to support the participant’s sacrifice of predetermined foods (usually the allergens of their loved one), in honor of people with food allergies.  What an absolutely awesome idea!  Not only is the participant supporting people with food allergies through a sacrificial act, they are raising funds for research to help end food allergies.

It sounds simple, right?  Just avoid peanuts, milk, or eggs for the day.  This only sounds simple.  Once you begin reading labels, you will see how difficult it is to find foods that do not contain these allergens.  Sometimes you are lucky enough to find foods that don’t contain peanuts, eggs, or milk in the ingredient list, offering a glimmer of hope.  However, as you read on down the label, you find that they “may contain” your allergens due to cross contamination.  Your food choice list becomes short.

Choosing to live a day in the life of someone with food allergies is exhausting.  The substance (food) that you must have to keep you alive, can also kill you if it’s the wrong type of substance.  Learning that the foods considered safe for you may contain the ones that aren’t safe for you by cross contamination is defeating to say the least.  What you can eat becomes a more narrow spectrum.  Restricting your choices so drastically makes you begin to feel imprisoned.  It’s as if you are living in a glorious mansion but confined to one tiny linen closet because that’s your only safe space.  Eventually, you become extremely grateful for that tiny little safe space.

As a parent of a child with severe food allergies, I am choosing to take part in the Top 10 Challenge fundraiser for food allergy research.  My prayer is that many people will take part in this Challenge, not only to raise funds but also to experience a day in the life of someone with food allergies.  Although you may feel restricted in your food choices, your eyes will be opened to some other beautiful things you may have otherwise missed.  Try it and you’ll see what I mean.

If you are interested in the Top 10 Challenge, please visit My Challenge Ambassador Page to learn more about how you can support or visit the Top 10 Challenge Page.

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Why is “May Contain” food labeling voluntary?

Why is “May Contain” food labeling voluntary?

In 2006, “top eight” allergen labeling became mandated by the United States Food and Drug Administration in all packaged foods manufactured and marketed in the US.  The top eight food allergens are milk, egg, fish, shellfish, tree nuts, wheat, peanuts and soybeans.  At that time it became easier for consumers to identify what packaged foods contained their allergens.

The ingredients must be listed on the packaging and also identified at the end of the ingredient list as a “Contains” statement, i.e. “Contains: Milk, Egg.”

Many packages also include a “May Contain” statement.  This statement is placed on the package to alert consumers that the product may contain food allergens by cross contamination, though it may not be an ingredient in the product.  This cross contamination occurs when production lines and equipment are shared with other products made at the same facility.  They may produce a product such as a cookie that does not contain peanuts in it’s ingredients, but earlier have produced a peanut butter cracker on the same equipment, thereby creating cross contamination.

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The utterly terrifying aspect of “May Contain” statements is that they are completely VOLUNTARY.   While I am thankful to the companies that include these alerts, I’m frightened by the products of companies that do not include these cautionary statements.  It only takes one tiny peanut protein to incite anaphylaxis in my son.  A word of caution to those with food allergies (and the parents of children with food allergies): call the company that produces the products to ensure there is no chance of cross contamination if they do not label with “may contain” statements.

While the US has come a long way in product labeling, we still have more work to do in full disclosure regarding packaged food products.  My prayer is that “May Contain” labeling becomes mandatory very soon.  Be aware and be safe.

The Holidays: Be Merry & Safe

The Holidays: Be Merry & Safe

Holidays can take a food allergy sufferer and their family to a whole new level of anxiety.  A time that is meant to be joyous and festive is wrapped in fear, trepidation and discomfort for food allergy families.  For us, food centered gatherings are no time to relax and enjoy the company of friends and loved ones.  Our focus must always be on safety, protection and prevention.  Children, teenagers and adults lose their lives at gatherings such as these, even when they do absolutely everything right.  There are too many moving parts to a family food-centered gathering, too many variables, too many figurative and actual hands in the pot, too much for us to monitor and ensure safety.

What defines many people’s ideas of the perfect holiday may not center around food such as pecan pie, peanut butter cookies, pumpkin pie with whipped topping, candied pecans, cheese balls rolled in nuts, and green beans with sliced & roasted almonds, but it is certainly a major part of their idea of the perfect holiday.  We are still fighting to show that one child’s favorite lunch food, a PB&J sandwich, is not worth losing the life of another child.  Holidays are a whole new ballgame.

If I could embody food allergy sufferers and their families with one trait, it would be perseverance.  We keep going, keep advocating, keep protecting, and yes, even keep loving despite all the hurtful, harmful and hateful opposition.  Despite all the negative comments, the abandoned friendships, the shunning of family members that just don’t get it, we keep going.  We persevere.

Keep in mind at this years’ family gatherings that we don’t want to be a pain or offensive by asking millions of questions about food prep, ingredients, labels, what you ate before you came and other weird-seeming questions to non-food allergy folks.  We want to be protected.  We want to leave the party in the same car we arrived in, not an ambulance.

For some families, possible exposure is too big a risk to take, especially when the allergy is severe.  Please know that we want more than anything to be there.  We sacrifice our desires & preferences to keep our children, or ourselves, safe.  We ask for no judgement on this decision.  I promise it is a painful decision for us to make.

Be careful, my dear food allergy friends.  It’s a minefield out there.  My prayer for you is discernment on what is a safe situation and what is not safe, and of course to always be safe.

My prayer for all non-food allergy friends & families is for understanding, respect and love towards food allergy sufferers.  That’s the best holiday gift you could ever give us.

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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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