Saturday, October 3, 2015

Sibling support for food allergy walk

In one week our team, "Nuttin' We Can't Overcome", will participate in the Westchester FARE Walk for Food Allergy. My 7-year-old daughter, Pamela, wrote why she walks each year and donates her own money to support my 12-year-old son, Joseph, who has multiple food allergies. Here is what she wrote: 

I think it is important to support my brother in the FARE Food Allergy Walk because I love my Joey. I feel bad that he misses out on eating some food because of his allergies. I also get scared sometimes because I don't want  foods to hurt him.

Wednesday, September 16, 2015

Annual walk a reminder of kind gestures

Pamela and Joseph at the 2014 walk
in New Rochelle, N.Y.
The arrival of a package is usually greeted with excitement. Is it something fun, a new outfit, or one of our favorite allergy-friendly products? My favorite packages represent kind gestures, such as a letter, funny item or gift from a great friend or family member. Those packages bring an instant smile no matter what is in the box because they let us know that the person who we likely haven’t seen in a while and miss terribly, is thinking of us.

My sister Linda during the walk this year
in Indianapolis.
We recently received such a package from my sister Linda. The box was full of coupons for allergy-friendly brands, a FARE (Food Allergy Research & Education) Walk T-shirt, snack samples and a gift card to fuel my caffeine obsession. The package was a tangible representation of my sister’s support for my family as we navigate life with food allergies. She sent the items after recently participating in the FARE Walk for Food Allergy in Indianapolis in honor of my 12-year-old son Joseph, who has multiple food allergies and asthma. While she started attending the walks with us when we all lived near each other in North Carolina, she has made a point to attend the Indianapolis walk since moving to Indiana.

My dad and Linda with
Stormy, the Carolina Hurricanes mascot
at the walk in Cary, N.C., in 2009
We are so grateful for the support we have received from Linda, other family members, and friends through the years for our team “Nuttin’ We Can’t Overcome”, whether they have walked with us, made a donation, or sent well wishes as we take our annual walk to raise money for food allergy research. The support for our participa
tion in the annual event is one of many ways others have shown us consideration and kindness.

My sister Beth and Joseph
during a rainy walk in Cary in 2012
During a recent discussion with my children about kindness, we listed the many ways our friends, family, colleagues, and community members have exhibited kindness regarding Joseph’s food allergies. They include ensuring only safe food is served at an event; washing hands without complaint after eating unsafe foods while hanging out with Joseph; taking the time to find a non-food treat or prize that Joseph would appreciate, especially on candy-heavy holidays like Easter or Halloween; learning how to administer his life-saving epinephrine; being cautious about safety measures we have in place in our home or at a restaurant; or even just taking a minute to listen.
Our family bundled up for a cold walk in Cary in 2011.

When we walk along the water during the Westchester FARE Walk for Food Allergy on October 10, I will be reflecting on those many kind gestures. Like the package my sister sent, they all will make me smile.

Monday, September 7, 2015

Nostalgia often an ingredient in my kitchen

Nostalgia snuck up on me while I was shucking a dozen ears of corn from the local farmer’s market this weekend. Suddenly I was transported back to my childhood patio, sitting with my Grandpa Al and a big pile of corn, removing the husks and placing the cobs in a huge pot, ready to cook. 

Grandpa Al feeling patriotic
at a summer cookout
Patient and kind, my grandpa was always happy to sit and chat, listening to my tales and showing genuine interest in what I had to say, while also sharing some of his own wonderful stories. I have many fond memories of Gramps, whether he was dancing around the room with me on his feet, teaching me about the flowers in his yard, or playing shuffleboard in his neighborhood. We spent many summer days with my grandparents, enjoying fresh produce from the farms in eastern Long Island. When I think about all of those family cookouts, the warmth my grandpa exuded glows brighter in my memory than the summer sun.
My dad, me and Grandpa Al 

I suppose it is natural for some wistfulness to linger at the unofficial end of summer that comes with Labor Day weekend. As colder weather looms, we reminisce about the carefree summer days and fun outings. Naturally, thoughts of my grandpa made me think of my mom. When I take a glimpse of my childhood summers, it is so easy to picture my mom donned in her bright bathing cap, happily swimming back and forth through the Long Island Sound water at our town beach, where we spent every day each summer. I love to look back and picture the joy on my mom’s face as she soaked up sun at the beach or bustled about the kitchen preparing food for our family gatherings.

Another summer memory:
My mom and me when I graduated from Penn State
Melancholy sometimes creeps into those memories, too, since my mom died almost 20 years ago. I miss her every day, but I like to share my memories with my kids so they can get to know her through my stories. I think making food from her recipe collection also helps my son and daughter feel a little closer to her. I wasn’t sure I would be able to share my mom’s recipes with my kids when I changed my cooking habits 12 years ago to feed my son Joseph, who is allergic to peanuts, tree nuts, wheat, milk, egg, soy, sesame, mustard, watermelon, cantaloupe and strawberries. But successfully substituting ingredients allows me to share my mom’s recipes along with those memories. I smile at least a couple of times a week while making pancakes using my mom’s recipe, switching out ingredients to make them safe for Joseph.

Pamela at the farmer's market
The comfort of one of my mom’s recipes was just what I needed during my nostalgic reverie this weekend, so I made an allergy-friendly version of her cinnamon braid. I always chuckle as I look at my mom’s recipes with vague notes in the steps like “add some flour” because they are a reminder of a habit we share to often wing it in the kitchen. As my kids gobbled down the yeasty bread coated with cinnamon and sugar, I told them how my mom would greet us from a day of sleigh riding with warm cinnamon braid and hot cocoa. Thankfully, it is not snowy and cold yet, but that bread gave me a delectable hug while putting grins on my kids’ faces that reminded me of the sweet smile my grandpa would share on my childhood patio. After enjoying the warm bread, my daughter Pamela said she wants to learn exactly how to make her grandma’s yummy cinnamon bread so she can bake it for her kids when she’s a mommy.  And with that my melancholy melted away.

Friday, September 4, 2015

Friday fritters for carnival cheer

Football beanbag toss, spin the wheel, paddle ball with balloons, and Nerf darts were all part of our school day today. I thought it would be fun to finish our first week of school with a carnival theme after Pamela read a fun, quick story, “Cam Jansen and the Mystery of the Carnival Prize”. We used the book as an example of the elements of a mystery story during our writing workshop. Then the kids aimed their Nerf dart guns at cards with words like “alibi”, “interrogate”, and “hunch” to reinforce the mystery vocabulary.

The theme also conjures images of popcorn, ice cream, fried food and cotton candy, as crazy carnival creations are often stars of the outdoor fun fests. While those foods are not safe for my 12-year-old son Joseph to eat, we still enjoy seeing what carnival cooks come up with and use those dishes as inspiration to make our own allergy-friendly treats. For example, the Food Network show “Carnival Cravings with Anthony Anderson”, brings us to carnivals around the country, including one in our former home state of North Carolina, to see the wacky combinations that take flavors and deep-fried concoctions to new levels. But when we lived in the South, we avoided the fairs at which nuts seemed ubiquitous, making the events unsafe and certainly not fun for Joseph. He is allergic to peanuts, tree nuts, wheat, milk, egg, soy, sesame, mustard, watermelon, strawberry and cantaloupe, along with having asthma.

As I look back on the summer during this holiday weekend, I am reminded of a night our family spent enjoying the local firefighters parade and carnival. Our focus was on fun, rather than food, whether trying to win a prize or getting a thrill from a ride. A big bonus, which allowed us to soak up the atmosphere, was the lack of peanuts boiling and crushed nut shells all over the place. Joseph could play traditional carnival games, such as shooting a water gun to make his character race to the top the fastest, and throwing darts to pop balloons. He even let his little sister talk him into spinning around in a big, silly dragon. Sure, we went through a bunch of wipes to ensure remnants of melted ice cream or other allergens didn’t affect Joseph, and as always he had his Auvi-Q epinephrine auto-injector and inhaler in case of emergency. But as we walked home, arms full of stuffed prizes, spotting fireflies flittering through the dark sky, we all carried memories of a fun night experiencing a summer tradition.

We did include fun food for the mini carnival in our homeschool. We made dairy-free vanilla ice cream and allergy friendly apple fritters using a recipe from the Food Network’s Pioneer Woman Ree Drummond, just using substitutes for the ingredients to make them allergy safe. It was a yummy way to finish the first week of school, plus we enjoyed whetting our appetites for the fall flavors on the horizon.

Tuesday, August 18, 2015

Empathy and enjoyment at our local library

The big smile on my son’s face as he bounded out of the library said it all: The Minecraft Teen Lock-in was a success. Like many other kids, Joseph loves playing Minecraft, so it’s no surprise that he would enjoy a two-hour event focused on the game. After all, he had been attending the Minecraft club and Minecraft directors club at our local library at least a couple of times a month throughout the year. But when he first heard about this event, he considered not attending.

Joseph assumed the event would include food. There have been times at other locations when food has made Joseph feel unsafe or excluded at an event because of his multiple food allergies to peanuts, tree nuts, wheat, milk, egg, soy, sesame, mustard, watermelon, strawberry and cantaloupe. That anxious feeling when other kids are eating unsafe food around him undermines the fun. This time, he didn’t have to worry.

In addition to planning amazing programs for teens throughout the year, Nicole, the youth services programming coordinator at the Pawling Free Library, has been wonderful about ensuring that any event Joseph attends is safe for him in light of his food allergies. Food is not part of most of the programs Joseph attends anyway because they mostly revolve around computers. But when food has come into play, Nicole has taken Joseph's needs into account, for example making sure to only bring the brand of chips that Joseph could have when she was having snacks at the end of one session.

The Minecraft event was no different. Nicole assured Joseph that there would only be snacks that are safe for him. She even offered to get all safe ingredients and make cupcakes that would be fine for Joseph. My comfort level is to make the cupcakes for the event myself, but I thanked her for being so willing to go the extra mile to accommodate Joseph. When I explained to her that her empathy for my 12-year-old and her efforts to ensure that he could safely enjoy an event is so appreciated because that is not what we often experienced, she was incredulous. She wondered, how could people think that the type of food at an event is more important than a kid’s enjoyment and well being?

I am so happy to have found such support for Joseph at one of my favorite places. The library has always been an integral part of my life and it continues to be for my family. The library was one of the first places we visited as we got acquainted with our new town after moving here a year ago. The books lining the library shelves were a comfort to us, wrapping us in a familiarity when everything was so different. Both of my children are voracious readers, so they would have loved the library just because it held so many experiences and worlds for them to explore safely between the covers of both well-worn and brand-new books. But the friendly faces that greet us each day when we enter, the help we know we can count on to find just the book, and the amazing programs that both of my children continue to enjoy make the Pawling Free Library extra special. In addition to Minecraft club, Joseph has taken classes in computer programming and 3D printing, worked on the library teen newsroom, and created a blog, "Pancake Domination". Pamela, 7, has enjoyed book clubs, craft activities and learning to sew, in addition to finding her wonderful Girl Scouts troop through one of the programs.

I felt so blessed as I decorated the Minecraft cupcakes for the teen lock-in. I have probably made thousands of allergy-friendly cupcakes during the past 12 years and it is especially gratifying to make them for an event that involves someone like Nicole, who has been so supportive. Joseph said that he had a blast at the Minecraft event, noting that he could enjoy his favorite part — playing Minecraft — because he didn’t have to worry about the food.

Tuesday, August 4, 2015

Some summer fruits not so super anymore

I put out bowls of cut-up cantaloupe with warm, homemade chocolate chip cookies just as my husband and son were pulling up. My son was having a rough day, so I thought it would be nice to surprise him with his favorite cookies and fresh cantaloupe to cheer him up a little when he got home from an appointment. Well, that was a major fail.

As soon as Joseph started eating the cantaloupe, he looked at me in fear. He said his mouth was feeling extra itchy and his lips felt funny. Then he realized it was the same way he felt when his mouth and throat got itchy after eating strawberries a year ago. He has also reacted in the same way to watermelon.

The reaction to these fruits is different than the more serious, life-threatening anaphylaxis that Joseph, 12, has experienced with other foods to which he is allergic. Instead the fruits on his list of allergies are part of his Oral Allergy Syndrome (OAS), common in pollen allergy sufferers, especially those allergic to birch, ragweed and grass pollens. A reaction occurs when “the immune system treats proteins similar to those in pollen that are sometimes found in fruits or vegetables the same way. This ‘cross-reactivity’ is a result of the immune system recognizing that the proteins in these foods are similar (although not exact) and an allergic reaction is the result,” according to the Asthma and Allergy Foundation of America (AAFA).

Each allergic reaction is unique, even for the same person to the same food. There’s no guarantee that the next reaction won’t be more serious, even with OAS. While most OAS patients suffer itchy mouth, scratchy throat or hives, there are patients for whom an anaphylactic reaction to those foods is possible, according AAFA.

Although OAS is usually considered less severe, it does not take away the fear when he bites into a food that previously was safe for him to eat and his body starts to react. At the moment he starts feeling the tingling in his mouth and throat, he doesn’t know whether this food will send his body into an anaphylactic reaction. All he knows is it doesn’t feel right.

Once the fear of a larger reaction passed, the disappointment set in. Cantaloupe is yet another food that Joseph now must avoid, in addition to peanuts, tree nuts, wheat, milk, egg, soy, sesame, mustard, watermelon and strawberries. His list of food allergies seems to keep growing and the fruits that have been added in the past few years as part of OAS are in some ways tougher for him to accept. He has enjoyed those fruits before so he knows what he’s missing, unlike the other allergens that he never had. He’s never tasted a hot slice of pizza from the local pizzeria, a peanut butter and jelly sandwich or a treat from the ice cream truck. But homemade strawberry shortcake? Yes, that he will miss.
As I looked at all of the fabulous ways people are using watermelon on National Watermelon Day yesterday, I was reminded of a blog post I wrote five years ago titled “Watermelon Smiles” . In that post I heralded the joys of the juicy, sweet fruit as a wonderful, natural allergy-friendly food. Well, the salad I mentioned making so often back then had three fruits that Joseph can no longer eat.

The bounty of fruits available during the summer has lost a little bit of luster as Joseph looks at each fresh fruit as a possible OAS offender that might join his growing list of allergies. Still, there are still plenty of fresh vegetables and fruits that he enjoys, and Joseph always uses his wonderful sense of humor to put a witty spin on any disappointment. But the next time I want to give him a treat to lift his spirits, perhaps I’ll just stick to his favorite homemade chocolate chip cookies.