“They Need to Learn How to Live in the Real World!”

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CAKE! Safe cake for me on my First Communion Day ūüôā

“They need to learn how to live in the real world!” ¬†How many parents of food allergic children have heard this line? ¬†It drives me crazy. ¬†I’ve heard this during numerous food allergy conversations. ¬†While it *can* come from a place of concern, rather than a place of, “Your child is ruining all of the fun for everyone else!” ¬†I would never say something like this to a parent of a child with special medical needs. ¬†Yet as food allergy parents, people feel like they can say just about anything to us. ¬†Food allergies are truly a unique diagnosis. ¬†This diagnosis comes with so much judgement from others.

I remember reading an article written by a food allergic teen, discussing her experience in grammar school. ¬†She needed an aide to stay with her all day in school, to make sure she didn’t accidentally eat anything she was allergic to, as well as to treat her with her epinephrine auto injector if she experienced a severe allergic reaction. ¬†She hated this management plan. ¬†She felt so self conscious and excluded.

Instead of the school reducing the amount of food centered celebrations and teaching the class about how to help someone with food allergies, she had her own snack box for every class party and her trusted aide by her side. ¬†One thing that really struck me was how she said everyone thought this was training her for life in the real world. ¬†Being excluded from the same treats during class parties and being surrounded by foods that could potentially harm her were ways to help her in school and in the real world. ¬†Wow. ¬†That’s a lot to ask of a child in the school setting. ¬†She said, “In the real world, I can walk away! ¬†I couldn’t walk away from my classroom.”

Words of wisdom from a food allergic teen, who knew how to walk away from dangerous situations in the real world.

As food allergy parents, we are teaching our children how to live in the real world, Every. ¬†Single. ¬†Day. ¬†Not a lick of food gets past their lips without our kids first thinking, “Is this something I am allergic to? ¬†Could this make me very sick?” ¬†I thought potty training was hard! ¬†Imagine the steps that go into training our food allergic kids from day one. ¬†It’s a process, a process that evolves over time and changes during each stage of development, depending on the needs of each food allergic child.

A few nights ago, my husband and I let our kids go into an awesome ice cream shop. ¬†The kind with colorful pictures of frozen sundaes on the walls, with lots of flavors, toppings and mix-ins to choose from. ¬†My 10 year old daughter with food allergies cannot eat at this place because it’s way too risky. ¬†But she wanted to go in with her sisters, who ordered the most magnificent looking frozen desserts. ¬†My child with food allergies knew she was going to get a safe treat from another place after this. ¬†We thought she was fine with that compromise. ¬†This is not something we would have done when she was too little to understand; however, recently she has become more comfortable with experiences like this. ¬†So we test our parameters, hoping they are helping her adjust to “life in the real world” ¬†under our loving care as her parents.

Interestingly, she had never stepped foot in this particular ice cream shop until that night. ¬†I was upstairs when they came home. ¬†My food allergic daughter ran up the steps to find me and began to cry. I gave her a big hug and asked what happened. ¬†She said, “When I walked in that ice cream store everything SMELLED SO GOOD! ¬†Everything LOOKED SO GOOD! ¬†I just wanted to be able to eat it too, but I can’t.”

<Insert this mom’s heavy heart as our tear-filled hug continued>

After a few minutes pause…

I was so happy to be with her in that moment, to allow her to freely express herself without judgement or criticism. ¬†I was so happy to give my daughter the big hug she needed. ¬†I was so happy to help her see past her limitations, while acknowledging the maturity she has in taking such good care of herself at the tender age of 10. ¬†I was so happy to remind her that she is the boss of her allergies, just as she tells me, and that there are so many other safe and yummy foods she can enjoy. ¬†Lastly, I thought about the food allergic teen I mentioned before. ¬†I thought about her being my daughter’s age, sitting in her 5th grade classroom, while the whole class celebrated together, with delicious looking treats she could not eat because her life depended on it.

I was suddenly so grateful for my daughter’s food allergy aware school, a school that understands the importance of food allergy safety and inclusion. ¬† I was so happy it was me, her mom, who was there to help her. ¬†When something like this ice cream store debacle happens again, because we all know it will, my hope is she can draw strength from both our conversation and hug.

I am so happy she can focus on her schoolwork in her classroom, without the added stress of navigating socially awkward and dangerous food centered celebrations, either all on her own or with the help of an aide. ¬†It’s me, her mom, teaching her how to cope with this difficult (and often overlooked or dismissed) psychological aspect of living with food allergies.

The next time someone gives you the “real world” comment, my advice is to kindly remind them you do this, ¬†Every. ¬†Single. ¬†Day.

“Just Keep Swimming” ¬†Food Allergy Family!

 

A Beacon of Hope

I’ve read two recent articles from Allergic Living touching upon the feeling of embarrassment that can come along with the diagnosis of food allergies. ¬†Both stories expressed how the two young people with food allergies who died, didn’t like to make a big deal out of their allergies. ¬†The grieving mom of the one young man tells people to speak up about about their food allergies. ¬†She is also an ER Nurse. ¬†Her story is¬†here.¬† ¬†In another article, the friends of a high school boy who died from anaphylaxis repeatedly say they wish they had known what to do during an allergic reaction. ¬†You can read their tragic experience¬†here.¬† Two different tragedies. ¬†The same rallying cry: ¬†Speak up and educate everyone you know about anaphylaxis and how to respond. ¬†I am in awe of these courageous people who share their deep sorrow with the hope of saving others. ¬†We all need to listen.

My heart. ¬†It sinks reading these desperate calls for help. ¬†Especially from the mom who is also a nurse, like me. ¬†Those kids, they could easily be the friends of my child. ¬†Will my daughter know how to speak up for herself with confidence in high school? ¬†Will she be able to handle travel and attend work events when starting off her career? ¬†Will her desire to “blend in” and not cause an “allergy scene” cause her to make poor choices? ¬†Will she teach her friends and colleagues how to help her if she experiences a severe allergic reaction? ¬†Will she be brave enough to *ask* for help, understanding she will not be in trouble or punished for having a reaction? ¬†What if she has a bad day and pops a piece of ¬†(contaminated) chocolate in her mouth without thinking first? Just one wrong bite‚Ķ accidents happen. ¬†We’re only human. ¬†All of these thoughts flood my mind. ¬†I tell myself to slow down. ¬†She’s 10. ¬†But for those few moments, I see her in each of these scenarios, and it’s overwhelming.

I do not have food allergies. ¬†I am the person who never wants to cause a fuss. ¬†As a guest in someone’s home, I was raised to have good manners and graciously eat whatever was put on my plate. ¬†When I was around 5, I remember I ate lima beans at my friend’s house. ¬†I never ate lima beans at home. ¬†I thought they were disgusting. ¬†My mom was shocked when I told her I ate them. ¬†At a restaurant, my parents taught us to not complain or send food back unless there was a serious problem. ¬†“No, I’m not sending that burger back. Pick the onions off and eat it!” I can still hear my Dad’s huffy voice in my head. Once on vacation, my brother didn’t like how his steak was cooked. ¬†The waitress picked it up, flipped it over and gave it back to him! ¬†Yes. ¬†Maybe my dad was right. ¬†Just eat the food you’re given and be thankful.

When you have food allergies, the old ways we learned go out the window! ¬†I think this is where that feeling of “being an inconvenience” stems from. ¬†It goes against our very upbringing. ¬†I had to learn how to speak up and advocate for my child without being afraid of offending someone. ¬†At first, my husband was way better managing these difficult conversations. ¬†I wanted to hide under a rock. ¬†I didn’t know where to begin. ¬†I felt flustered, like I had a neon “Food Allergy Mom” sign glaring over my head, 24 hours a day. ¬†Those were uncomfortable days. ¬†That invisible sign still glows bright during transition times, but then dims down again to a livable level. ¬†We’re learning to live with this allergy light on, but now it’s more like a comforting night light. ¬†This soft light has become our beacon of hope, representing the much needed food allergy education and awareness.

Being comfortable with your food allergy light is an important step in managing life with food allergies. ¬†You need to become very comfortable talking about food allergies and educating others with your own authentic voice. ¬†Much like a night light, the ability to educate others provides safety and guidance without getting in the way of living or sleeping! ¬†It has taken me years to carve out a secure spot for this little light. ¬†My hope is my daughter will take her own light with her when she’s ready to leave the nest, just like she learned how to ride her bike, cross the street, and someday drive a car. ¬†This light is not something a child can learn to switch on in a day. ¬†This a process, and she is carving out a secure space for it in her own life.

That’s the place I return to, when my mind zooms off into the future. ¬†When I think about her hanging out at a high school party or sitting down at a business dinner. ¬†My hope is our daily rituals, that little light, will be as natural to her as the color of her eyes. ¬† One day she will shine and be able to articulate clearly, eloquently and gracefully her food allergy needs, without feeling like an inconvenience. ¬†My prayer is for those she is relying on, that they will take her seriously. ¬†This is something we practice over and over, learning from our mistakes and celebrating our successes, no matter how small they seem to the outside world.

The daily conversations will pay off. ¬†“Do you have your epis? Did you ask where the party will be? ¬†Did you call the restaurant? Does your friend’s mom know how to use your EpiPens and call 911? ¬†Where’s your medic alert bracelet? ¬†Did you check the ingredients? ¬†Did you wash your hands?” ¬†While others may see this as nagging, it’s making an impact. ¬†She’s making this a part of her daily routine. ¬†I notice her packing her epinephrine for sports. ¬†I see her read labels and prepare her lunch for school. ¬†I’ve heard her speak up for herself at school. ¬†I’ve watched her friends look out for her. ¬†This process is working. ¬†Her light is starting to shine.

Keep at it, moms and dads, and all those who care for kids with food allergies. ¬†Together we will continue to make a difference. ¬†With 1 in 13 kids having food allergies, we are not alone in our efforts. ¬†One day, our kids will be managing this all on their own. ¬†As a mom, I know the worry will always be there. ¬†But, with their little allergy lights of education leading the way, as a beacon of hope, the road won’t be as dark and scary.

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Hook Lighthouse, Co. Wexford, Ireland

Overcompensating

It’s that time of year again, where food allergy mamas everywhere are gearing up for another food fest. ¬†Whether it’s Easter, Passover, school spring events, or a special family gathering in the works, have a chuckle with me. ¬†Over the years, I have noticed a pattern. ¬†With each new season or holiday, I find myself online and in the stores spending way too much money on allergy friendly foods and fancy finds. ¬†Last week, it was Easter candy. ¬†I mean, I have one child with EOE who is gluten and dairy free, who happens to LOVE chocolate, and another child who is anaphylactic to peanuts, tree nuts, sesame & soy protein. I made sure my little loves will have Easter baskets to gush over. ¬†Where did I order from? ¬†Vermont Nut Free and No Whey Chocolate. ¬†My two non allergic kiddies will also enjoy foods from those companies, because I don’t want to have any extra stress Easter morning.

Today, it was Key Food (a local grocery store) and Michaels that received my hard earned cash. ¬†I had to stock up on allergy friendly baking supplies for a bake sale and and upcoming after school function. ¬†I bought Enjoy Life mixes and chocolate chips, and King Arthur Gluten Free mixes, along with other products that made my heart skip a beat, like Made Good granola bars. ¬†Next thing I knew, I was at the check out line saying to myself, “I can’t believe all of the things in my cart! I really didn’t need this many boxes or bags‚Ķ” ¬†I said a prayer of thanks and hoped my husband would be in agreement!

Next up was Michaels. ¬†I hadn’t been in Michaels in a while. ¬†There are so many cute things there for spring, just perfect for an upcoming event I’m helping with! ¬†You guessed it… in the cart they went. ¬†Paper goods, cupcake wrappers almost too cute to use, fancy serving trays, a colorful teal wire basket, teal gems to decorate a table‚Ķ. yikes, but who can refuse teal, the color of food allergy awareness? ¬†I said another prayer, this time really hoping my hubby would see the best of my intentions! ¬†We make spending decisions together, and I realized I was in the midst of another food allergy mama overcompensation shopping spree!

I took a breath. ¬†I looked up and said, “Thanks.” ¬†I’m thankful for the gift of time I have to do this for my family as well as for others who will safely indulge in my purchases. ¬†I am truly grateful I can afford to do this. ¬†I am overjoyed to have immediate access to so many food allergy friendly, delicious and festive finds. ¬†Most of all, this allergy life allows me to pause and appreciate so many little Blessings I’m not sure I would have paid much attention to before. ¬†Why did I overcompensate? ¬†I’m not sure, out of love or guilt‚Ķ ¬†or maybe a bit of both! ¬†Either way, I can’t wait for everyone to enjoy all of these things!

The Importance of Inclusion in a Time of Thanksgiving

One in thirteen children in America have food allergies, according to the national allergy organization, FARE (Food Allergy Research & Education). Roughly two children in every classroom are managing this potentially life threatening medical condition at school. Out of safety concerns, children with food allergies are often isolated, being made to sit separately from their peers. They are not able to sit with their class during snack or lunch. Often times, they have to bring in their own safe food for classroom birthday parties and holiday celebrations.

Can you imagine being the child in the class who can’t devour the super cool birthday cupcakes or latest Pinterest holiday treats your classmates are enjoying? Or having to sit separately from the group in your own classroom? By looking through the eyes of an allergic child, one can see how isolating this might feel, having to watch from the sidelines in their very own classroom. This is a time for bonding, laughing and celebrating, together. You see, children with food allergies did not choose to sit away from their friends or refuse foods offered because they are picky eaters; their lives depend on strictly avoiding their allergen(s).

How can we solve this problem of exclusion and reduce the risk of anaphylaxis in our schools? Reducing the amount of food-centered celebrations is a big step in the right direction, not only for the safety and inclusion of all of our kids but also for improved health and wellness. See the link for CDC’s Voluntary Guidelines for Food Allergy Management in Schools¬†here.¬†¬†But what about those times when food is an important piece of the party puzzle?

Last Thanksgiving, the school my children attend did something really awesome. The students in grades K-8, along with the faculty, staff, local elected officials and guests came together for an allergy friendly lunch.   A festive assembly performed by a local Native American organization also took place during this event, reducing the need for tons of food to keep the party going.

What was the best part about this celebration? All of the children were able to sit safely with their classmates and enjoy the same treats as their peers. There wasn’t a special table where allergic students sat. There weren’t little eyes, longing for those delicious cupcakes that could potentially cause anaphylaxis, a life threatening allergic reaction.

We followed our school’s Food Allergy & Anaphylaxis Management Policy. ¬† In collaboration with our school nurse, principal and parents of kids with food allergies, we designed a party safe for everyone. We did not use homemade/ baked goods. ¬†All foods were cleared with food allergy parents first, had clearly labeled ingredients, free from everyone’s allergens. ¬†Our gymnasium was transformed into a fancy dining room, complete with tablecloths and centerpieces. All of our efforts came together, and a new tradition was born. In the true spirit of Thanksgiving, we had an inclusive, joyous and safe meal together.

 

Love Sweet Love

I stumbled upon a video on Facebook showing people putting down their devices and becoming present in real life again. ¬†You can watch this heartwarming video for yourself,¬†here. It’s really beautiful. Strangers gather together, over a makeshift table in an apartment building hallway, bringing pot luck dishes and warm crusty bread to share.

The young and the old, sitting down to enjoy a homemade meal. ¬†The song, “What the World Needs Now is Love Sweet Love” plays in the background, almost sounding like a waltz bringing up my most treasured memories. ¬†Enjoying an ice cream on the boardwalk in Wildwood, NJ. ¬†A big family reunion at the firehouse. ¬†Thanksgiving Dinner with my Grandmother’s special recipes. ¬†Life’s major milestones, including religious traditions, marked with meals and desserts, shared with dear family and friends.

Before food allergies impacted my family, I loved all of these occasions. ¬†We thoroughly enjoyed exploring life through food, laughter and adventure. ¬†I couldn’t wait to travel to Ireland and visit our family. ¬† I was excited to watch my children enjoy the chocolates, sweets and special dishes my husband talked about while remembering his days growing up as a kid in Dublin.

Shortly after our second daughter’s first birthday, she was rushed to the emergency room because of a severe allergic reaction to a tiny bite of her sister’s peanut butter & jelly. ¬†Thankfully, ¬†I followed up with a board certified allergist as directed, who confirmed her severe food allergies and helped me learn how to safely live this new way of life. ¬†Sadly, the joyous days of carefree eating and feeding my little family came to a screeching halt. ¬†The allergist gave me a talk forever seared in my memory.

He told me EXACTLY what I had to do to keep my baby safe, even what restaurants, bakeries & ice cream shops I needed to avoid and how to read a food label for my baby’s allergens. ¬†He instructed me on what to do if she accidentally ate something with peanuts or tree nuts. ¬†He explained how I must immediately give her epinephrine because time was of the essence to improve her chance of survival. ¬†He showed me how to use the epinephrine auto-injector and said to then call 911 for transport to the emergency room for monitoring. ¬†He made sure I knew to never leave home without two epinephrine auto-injectors. ¬†I was told to follow up with him every six months to a year, making sure we stayed on top of her condition. ¬†An invisible barrier between life with and without food allergies fell before my eyes, like a garage door slamming to the ground.

I was in shock. ¬†My husband wanted a second opinion. ¬†After putting this allergy puzzle together, we connected it with her baby rashes, random hives and bouts of screaming. ¬†After replaying her first severe¬†allergic¬†reaction over and over in my mind, we knew our doctor was right. ¬†But as a nurse, with excellent training, I was angry. ¬†I never learned any of this in nursing school or during my time working as a nurse in the hospital. ¬†I couldn’t believe what I had to do to safely feed my child and family. ¬†But I was determined to adjust our life and fit back into this big, bad allergen filled world.

When I saw that Facebook video, it hit me over the head like a hammer. ¬†THIS is the heart of the matter. ¬†Imagine having food allergies and yearning to be a part of such a warm gathering. ¬†It’s not possible without what I call safety checks: what’s in the food, was there any chance of cross contact with allergens, were food prep areas, utensils and cook wear thoroughly cleaned before use, etc. ¬†This is what life feels like on the other side of that invisible door. ¬†How can you become part of the group when you can’t spontaneously share in such beautiful meals? ¬†How can you break through this invisible wall and explain your medical needs without sounding like an inconvenience? ¬†This can feel so awkward at times because food allergies go against the cultural norm we grew up with, to always accept food that is offered as a sign of respect. ¬† Somehow, those with food allergies must be welcomed at the table too, but this depends on others taking food allergies seriously.

Over the years, I’ve found the process of teaching my child how to advocate for herself with clarity, confidence and grace as one of the most difficult aspects of food allergy management. ¬†I fumbled my way through those early days, with my face turning red and my voice shaking. ¬†Then I realized she was watching me. ¬†I had to get this right. ¬†No matter how uncomfortable I felt, I could not let my fears keep her from experiencing life. ¬†I had to teach her how to speak up for herself. ¬†My goal is for her to be self sufficient and resilient, therefore I had to walk this walk and talk this talk. ¬†I found more seasoned food allergy moms and learned from their experiences. ¬†I’m still learning. ¬†But with each failure and success, we’re getting the hang of it. ¬†Now that she’s 10, she’s starting to find her own allergy voice, even during those socially awkward times. ¬†What a gift to see her grow in her confidence and gain this important food allergy conversation skill.

One day, I hope to scroll through Facebook and watch a video showing someone with food allergies joining the table. ¬†The person with food allergies brings a dish and says something like, “Does anyone else have a dairy allergy? ¬†I do and this dish is completely dairy free.” ¬†The conversation would go on, while they learned from each other about food allergy life, safely enjoying their meal at the same table, together. ¬† When people understand what life is like with food allergies, that invisible wall weakens. ¬†The safer, more welcomed and included people with food allergies become. ¬†What’s my advice? Be honest and brave, those with and without food allergies, and help break down this invisible barrier allowing love, sweet love to grow.