Food Allergy Awareness Week - React with Respect

Today marks the start of Food Allergy Awareness Week, and this year's focus is on encouraging individuals without food allergies to react with respect when someone tells them they have a food allergy.  Now, for most people I know, reacting to food allergies with respect and compassion seems like a no-brainer, but you only need to spend a few seconds in the comment section of any food allergy related post to get a taste of what kind of mean spirited things are said to or about people with food allergies.

With that in mind, my goal for this Food Allergy Awareness Week is to write about what it's like to raise a child with multiple life-threatening food allergies.  Hopefully one of my posts will reach someone who might think twice before saying or doing something inadvertently hurtful to someone with a food allergy or to the parent of a child with food allergies in the future.  I realize that people who say or do things like that often don't fully understand how serious food allergies can be and may not necessarily be acting from any sort of malicious place, but even with the best intentions, the wrong move may inadvertently put the lives of food-allergic people in danger.

My son is now two and a half and is allergic to five out of the "Top 8" allergens and more. I remember walking out of the hospital after my son's experience with anaphylaxis and seeing the outside world in a completely different light.  I was terrified.  It was like being asked to let my son grow up in a field of land mines - just one accidental step in the wrong direction could be disastrous. 

I knew how I could keep my child safe from "tricky people" from bullies, from car accidents, from drowning, but I had no idea how to keep my child safe from anaphylaxis.  This was galaxies beyond what I had imagined I needed to prepare my 14 month old son for.  As the diagnosis came in and we learned that wheat and egg had likely triggered his anaphylaxis, and that further testing showed he was also allergic to barley, rye, soy, tree nuts, peanuts, and coconut. I started to fall apart mentally. I knew peanut allergy could be deadly, but death by wheat seemed so outrageous.

I had wanted to be a relaxed parent who would give my child all the tools he needed to stay safe so I could let my kid explore the world and get his fingers dirty on his own.  Oh, he just ate a handful of dirt? Cool. Live and learn.  I wanted to continue traveling the world with him the way my husband and I did before he was born. I planned on us traveling overseas to meet my family, and to show him all my favorite places on the planet.  Planes will be out of our reach until he is old enough to tell us about the start of any allergic reactions. I wanted him to experience a world of foodie flavors with us and eat at all the new restaurants that pop up in our food-fanatical city.  We don't eat out with him anymore and we won't eat out with him again until there's a cure.

Before my son's anaphylaxis, my husband and I went out to dinner regularly and took him along with us.  When he was nursing, it wasn't a problem. As he started solids, we'd order items off the menu for him that I wouldn't normally cook at home and he'd happily chow down - a very well behaved baby in all kinds of restaurants. He'd usually come home with a mystery rash or his eczema would flare up days later.  At 8 months old, we went to a pizza place for a birthday party.  He didn't eat anything there, but wound up with a splotchy rash on his face from friends who had held him or kissed him after eating pizza. We didn't know about contact reactions then. We had no idea that these things could be food allergy symptoms and I had no understanding of the concept of cross contact.  We didn't put two and two together until after his diagnosis and then the guilt poured in.

I look back at photos of him at four months old, eczema on his face, hands wrapped in sleeves so he wouldn't scratch himself raw - why didn't I think to eliminate allergens earlier?  I was on an elimination diet while nursing him, but I didn't know how thorough my elimination needed to be until later. Besides, our pediatrician at the time, and his dermatologist were pretty positive his rashes were not food allergy related and that they were just a thing that happens to babies and that my elimination diet probably wouldn't help things clear up.  They were wrong. And it turns out, many physicians are sorely under-educated on the realities of food allergies.

As the months passed and we got better at doing the allergy thing, I'd settle into a zone and feel like I'd have control of things pretty well and that we had found our new normal. I felt like I didn't miss the old normal.  This was fine.  We could do this and everything would be awesome despite food allergies. Then something.  Something minor.  Something that most people don't even notice would snap me out of my positive attitude and remind me that our normal was not everyone else's normal and things would not be normal for a very long time... if ever.

I remember being at Costco and having a breakdown as I realized all the food that was in everyone's hands, being passed out, dropped on the floor, spilled on shopping carts, could kill my one year old. It was as if I was watching madness happen in slow motion, people frivolously playing with some kind of biological weapon.  Of course it wasn't a biological weapon to any of them, but all I could see was the threat all around me.  I watched parents feed their children free samples without even a second thought as to what was in them and I wondered if they were ever afraid of the food they put in their kid's mouths. Before food allergies, I had never given it a second thought.

I remember sitting at In-N-Out and watching a child younger than my son being fed french fries and a burger and becoming so sad that my son wouldn't experience In-N-Out. I wondered why that made me sad. I had never planned to feed my kid fast food and I rarely eat it myself, but crossing that off my son's "firsts" list put a cloud over my day.

I remember being at Gymboree where a friendly mother handed out cookies to all the excited children in the lobby while I scrambled to get my son's shoes on and run out of there before there were crumbs everywhere and my kid was asking me why he couldn't have a cookie too.

A fruit snack brand we trusted changed their ingredients to include wheat starch as the very last ingredient.  One more treat we crossed off our very short list.  A few weeks later, a freeze dried fruit company we had been purchasing from since O's first solids changed manufacturing facilities and now was processed in a plant that also processed wheat and other allergens.  Another snack off our list.

Little things.

As my son gets older, his allergies have not improved and we're getting him tested for three more foods that he's had unexpected reactions to in the last year.  We get closer and closer to the age where he's going to school and I'm terrified.  I have to trust another person to know his allergies. To keep him safe. To check labels. To consider ingredients in non-food things like glue, finger paints, play-dough, and water colors. Trust young children to not intentionally or unintentionally expose my son to the foods that will hurt him or could cost him his life. I can barely keep up, so I don't know how I'm supposed to let people who aren't completely obsessed with him do it.  We've talked about homeschooling... at least until he can self-administer his epinephrine, read labels himself, and say no to candy and cupcakes when they show up at school unexpectedly and everyone else is eating them. 

I'd make a terrible home school teacher.

I don't want my son to be the "special little snowflake" everyone assumes that food-allergy parents want their kids to be.  I want him to shovel food without a care down his adorable little gullet like the average kid and to never be singled out for something he can't eat or touch without the risk of dying. I want a cure in his lifetime.

Things have changed so drastically from the way I imagined parenthood, but I know more than ever that the best way to make the Universe laugh hysterically in your face is to have expectations and plans for your life.  I've also learned perspective.  Everyone is fighting a battle we don't see on the outside and for every parent that has it easier than me, there's a parent that has things twice as hard. We all do what we have to do.

We're getting better and better at managing the allergy thing, but we face challenges every day. I try not to complain much about our life with food allergies, but it was and still is a difficult adjustment that's worth every hurdle. This Food Allergy Awareness Week, I hope to share how much our every day lives have changed to keep our son safe and encourage everyone to react to food allergies with respect and compassion.

Remembering Grandpa Russ

Back in June I blogged about the passing of a man who I had thought of as a grandfather-figure since my childhood. This week another person that I had come to view in the same light walked through those pearly gates.

We got a call from Mike's sister late Tuesday night letting us know that Grandpa Russ had fallen earlier in the morning, was in the hospital and that things were not expected to get better. We wrapped up things at home and got to the hospital pretty quickly. When we got to his room, we were met by Mike's parents (who had been at the hospital all day) and Mike's aunt and her husband.

Grandpa Russ was not conscious, but he was breathing on his own and the medical team was doing everything they could to make sure he was comfortable as he slept. Occasionally he'd move his legs or clench his fists, but he wouldn't open his eyes. He couldn't say anything, but I think he knew we were there.

Mike and I spoke to him and reminded him that we loved him and that he just needed to relax and get good rest because everyone was taking care of him. His breathing seemed calmer when someone was holding his hand or talking to him. He knew he was loved.

I walked into that hospital room telling myself that I had to be the strong one. I had to be the one Michael could lean on when we faced reality. After all, Grandpa Russ had lived in the same house as Michael the entire time he was growing up. He was a fixture in Michael's childhood memories and a fixture in their household even after he was grown and out of college - this would no doubt affect Michael in a way I had probably not seen him affected before.

I suppose I just wasn't prepared for how much Grandpa Russ had affected me. Within minutes of walking into that hospital room, reality hit and I lost it. I was being hugged by Mike's mom and Mike was stroking my back. In a way, I failed. In a sense, Mike and I have been able to lean on one another to stop us from toppling over. It has been difficult and although Mike has been doing well, his grief is unfamiliar and sad and I never know quite what to tell him, or how often I should hug him. When he's vulnerable, I have complete control of my emotions, I can talk to him and listen and when he's strong, I become a big blubbering mess. So. Balance.

Mike and I started dating in 2004 and while I had always had a rough idea of what the "Layton Legacy" was, I was not prepared for what it meant to walk into the Layton home on Christmas day. I swear, there were probably 45 men, women and children there and I was introduced to everyone by name within the first 20 minutes. I am 95% sure I met Mike's secret sister, Kim, who everyone tells me does not exist. In any case, coming from a family where our warm Christmases were always just between our happy family of 4 (with occasional guests) this was nerve wracking. God forbid person A would ask me to get person B a drink, because I couldn't remember who person B was and would have no idea who to move towards.

As always, their house was vibrant with kids running around all over the place, siblings laughing, reminiscing and helping out in the kitchen. It had been a while since Mike had seen some of his nieces and nephews and was eager to catch up with all of them. I was the brand new girlfriend and I didn't want to get in anyone's way . I didn't want to be a burden on Mike as he enjoyed this time with his family.

And there he was.

Grandpa Russ sitting in his chair at the kitchen table smiling as he watched the hustle and bustle of your standard Christmas dinner at the house on Pinto. I had met him before, I think, maybe when I was in high school - but I didn't remember adults very well back then. He said he remembered me from when Mike was in high school, so I sat. We talked about things for a long while - probably food, and Christmas and family. Dinner was served and I went to sit with Mike at another table.

Every holiday or family dinner at the Layton house would go much the same way for a while. I couldn't remember who Mike's siblings were or how many he had and who was married to whom and what children went home with what parent, and which one had 4 kids and which one had 3, and who lived in California and who didn't and where the heck did Kim go!?

Grandpa Russ was constant.

We'd come over and he'd be in his chair and I knew that I could grab a coke and sit in the chair next to him and we could talk until dinner was ready and I could be comfortable and I could ask him over and over again which sister that was and who that child belonged to without getting embarrassed for still not being able to keep this big family straight. He was happy to tell me all about it.

Even after I finally learned everyone's name and forgot about imaginary sister Kim, the most comfortable place for me to be was still sitting in the chair next to Grandpa Russ.

When Mike's parents would go out of town, we'd go to their house so that Grandpa wouldn't have to be alone and Mike could make sure that he ate dinner and was ok. We'd bring Apple over and she'd go crazy in his room acting like she owned the place. Grandpa loved it. The last time we did this was a little over a month ago and he was having a harder time getting down the stairs so we sat in his room with him eating In-N-Out. He insisted that he didn't want to be a burden and that we should go eat downstairs at the table. We insisted that we wanted to eat upstairs with him and set up a dining room for the three of us. He ended up showing us all the treasures and family heirlooms that he had kept with him and the stories that he could remember going with them.

He was born in 1913 - what a century to live in. In 1913 the 16th and 17th Amendments to the United States Constitution are ratified, the Mexican Revolution is being fought, Woodrow Wilson succeeds William Howard Taft as the 28th President of the United States, the zipper and stainless steel are invented, and the first automobile road across the United States is dedicated. Most people ride around in horse and carriage and the trolley is a fancy new transportation device. He lived through tuberculosis, cancer and heart attacks (with unbelievable stories to go along with them) as well as the Great Depression, the invention of the telephone, x-ray, sonar, radio, television, antibiotics, Velcro, the microwave and sliced bread (literally.) He talked about how wonderful his wife, Mike's grandmother was, and how good his daughter and her family were to him (Mike's parents.) He lived an amazing life.

He was loved and respected and I don't think he ever knew how much of a crutch he was for me. He always worried about being a burden as he got older but he was the person who unknowingly gave me solid footing when I was so nervous about being liked. He took away any pressure I had put on myself to make the right impression in front of Mike's family. I didn't have to say much or be funny or smart - he'd let me sit there and just listen which is all I wanted to do.

I'm a little nervous about going back to the Layton house now that the chair at the kitchen table isn't claimed. I feel as though I should be stronger and less affected, but I can't help it. By now I know and love Mike's family as if they were my own and I don't need Grandpa to be my safe zone, but I really enjoyed just sitting with him during our visits, and I'll miss that. It will be hard to not notice how empty that chair is now but I'm glad I spent time sitting next to it when it was filled. I have boat loads of stories to tell our children about their awesome great grandfather and his adventures in the days before TV.

Much love Grandpa Russ. Say hi to Grandma Millie for me - we never met, but I know you missed her the most. You'll always be in our hearts.

The Magic Man

I'm oscillating wildly right now. One moment I'm calm, centered and accepting and quite literally in the next moment tears cloud my vision and I can't keep them in. My thoughts flat line and nothing comes out. I can't decide if I'm supposed to be more sad, more overwhelmed, more angry than I actually am or if this is what sorrow actually feels like. Right at this second... ?

My parents were both immigrants to the United States. I didn't have biological grandparents that we'd visit on holidays or that would come to our special school events or that would send us Christmas and birthday gifts. 3 of my biological grandparents had passed away by the time I was 2 and my paternal Grandmother lived thousands of miles away in Iceland (we visited her in Iceland and she came and visited us here in CA before she passed a few years ago.) In the absence of close biological relatives, my parents' friends became our grandparents and aunts and uncles. Some of these pseudo-family members drifted out of our lives as my parents' friendships faded or changed. Many of them didn't.

The closest people we had to grandparents were Ben & Gigi. My earliest memories of Ben are in an unfamiliar garage, maybe at my parent's first house. At that time, my brother and I called Ben "The Magic Man." He'd keep us entertained with slight-of-hand tricks that would astound us. My dad is a mechanic and he had a specific clientele of Citroen owners who trusted him to fix their unusual cars. Ben owned a few Citroens and was one of my dad's regular customers so he frequently came to our house for tune ups. Even as we started getting older and figured out his magic tricks, we'd still run out when he stopped by to see what neat trick he could show us this time.

As we grew up Ben & Gigi became an important part of our American family. They came to our important events - musicals, concerts, recitals, dinners (they even sat through the 4 hour madrigal feast each year - for my brother AND me - that's 6 years of that stuff!) Ben & Gigi (and my Godfather) were the closest people I could imagine to having physical Grandparents like many of my friends did.

In doing the planning for our wedding, I read about the significance and traditions of the "Something old, something new, something borrowed, something blue, and a silver sixpence in her shoe." The "something borrowed" was supposed to be borrowed from a happily married couple to act as a good luck charm for happiness in your own marriage. There was no question in my mind that I wanted to borrow something from Ben & Gigi. Gigi lent me a ring of hers that I wore on my pinky the day I married Michael. They had been married 64 years. We danced together on our wedding day - the longest married couple in the room and the newest married couple - sashaying across the dance floor to the sound of Glenn Miller's Orchestra playing Moonlight Serenade.

Ben met Gigi in Belgium during World War II. He was serving with the American army and Gigi was a pretty Belgian girl secretly working with the resistance. Gigi had described some of the awful things she remembered during the war, hunger, death, entire neighborhoods of Jewish families disappearing overnight. When the Allied forces came in to liberate Belgium, her mother volunteered at their church to take in some of the servicemen for a weekly dinner. Her mother used up her savings to buy a chicken off the black market and roasted it for her guests' dinner. Ben remembered it being the best meal he had had in a long time and of course thinking that chicken was regular fare at their home, showed up a few times more for dinner and hoping for another moment with Gigi. The rest was history. After the war, Ben traveled the world with the army but set up home base in Laguna Beach where he retired and they became fixtures in the community.

With everyone's busy schedules, the last time I saw Ben & Gigi was in March. Ben had been diagnosed with cancer and was scheduled to start chemo the day after we visited, so we wanted to visit before things got really tough for them. We were getting ready to go off on our Japan trip and since Ben had been to Japan a number of times and loved it, we spent the afternoon listening to his great stories from his visits from right after WWII to the 80's.

Their home had been filled with evidence of their world travels and they were never seemed afraid of what the daily news told them they should be afraid of. They were a calm, patient and jovial couple. They were always laughing with one another. Normally I'm uncomfortable around adults not of my own generation - I never felt that way with Ben & Gigi. I just liked listening to them. I didn't have to be a part of their conversations, I just enjoyed the world they painted for me as they talked and laughed and ate guavas off the trees in their back yard.

Today I found out that Ben had passed away. They had anticipated a rough recovery but he didn't make it this time around. He passed away holding Gigi's hand in their den.

I can't really describe what I'm feeling right now.

I actually found an article in their local paper where they were quoted back in 2007 on a story asking what Laguna Beach residents would like for Christmas:

“I have everything I want,” said Gigi Blount, pointing to her husband of 61 years.
“There is nothing we want very much, except more time together,” Ben Blount said.

I think I would also love just a little more time.