Tag: Life

The Ideal of Hope

Broken Tree
Photo Credit: David Steele

Whether you have or haven’t noticed lately, the world is getting a little more interesting for some of us. Job loss (in my own home, job losses for both of us at the beginning of the summer for which the joblessness has not yet ended), increasing cost of living, a government shutdown, the further separation of family and friends as we move in search of economic stability for our families. In fact, the number of blows that life seems to punch at us these days is enough to hack a large oak tree into an unrecognizable branch-less trunk.

Pruned a bit too far, it is easy to wonder about how much worse it can get, and if the next blow will leave you a withering twig in sand. You ride the emotional ups and downs with a strength that you never thought you had. A possible new opportunity gives a whole new branch of hope overnight, but then the “yes” you need doesn’t come. You remain strong. Your intellect knows that it’s just another “no” and one day your “yes” will come. But then, as my fiance’ says, the hopelessness hammer seems to come out of nowhere, to hack down your new branch of hope with a swift and painful blow. It’s not easy to remain strong when you don’t know how you are going to continue to live.

This is the best way I can describe the turning of a new direction for Safe Eats: It started as a fun blog of recipes for a little boy who wanted to have pizza again. It then evolved into developing recipes that included not just him and his allergies, but that of his friends.

As my family learned more and more about the life-threatening severity and prevalence of food allergies among so many children, our hearts went out to the members in our online groups that would report of their long nights in the ER and who found the very depths of emotional strength for which I have never imagined trying to pull from. Mothers and fathers holding the hand of their child, strapped to machines, struggling to breathe, struggling to live, and not knowing if they’ll go home to a room full of toys and space-themed blankets with no child to enjoy the rest of his innocent journey into life.

child hand

While my son has suffered intense reactions and pain, I’ve never had to watch him dance the edge of the cliff of death as other parents do nearly every two minutes in hospitals across the globe. We are very lucky. Our problems are not as big.  But this is a pandemic that needs to be our problem.

When I wrote the article about my son wanting to help his friend with her peanut allergy, making sure we don’t even have it in our house so that he never has it on his clothes when he is in class with her, it warmed my heart. Now, just because my son is my kid, doesn’t mean I’m going to think he can do no wrong. He is human just like the rest of us, with some things he needs to work on. However, there is something that my fiance’ pointed out to me about him. He said, “Your son has a really strong moral compass. Have you ever noticed that he absolutely will not sell anyone out even if it gets him into trouble? He won’t tell me if you left the light on or if his friend left the toys upstairs. I never find out until you tell me. He is so protective.”

After he said that, I thought about other scenarios where my son  took the heat for his friends. While I always thought it was sweet, I had never given him due credit. As my child goes with me everywhere and quickly runs with all  his might to get ahead and open the door for me and for other people, and the way instantly and enthusiastically gets up to help me with anything, I wonder how this child came from me. As an adult, I am not as helpful as he is – and I should be. I think about what drives him and I watch him as he reads comic book after comic book. He wants to be a Hero.

Four years ago.
Four years ago.

He’s not the only kid that wants to be a Hero, so do his friends. Have you noticed this about kids? They love Heroes! Secretly, so do grown-ups! (I’m still a sucker for Super Man movies to this day). My son, and his friends, are reminding me about the best part of human nature that resides within all of us: the Hero. It is the Hero inside of us that keeps wanting to be.

The more we have watched my son want to be a Hero, it has made us want to be a Hero with him.

One might say, isn’t the Hero theme a bit of a trope for something like an emerging nonprofit? Yeah, sure, it could seem to be an ego thing but if you reflect upon your own life and that of others, you realize that everything we do is based upon our need to be a Hero in some way. All emerging and ongoing nonprofits should look to emulate Heroes. And so should every business, organization and individual.

As for being Hero-driven, most people are already doing it –  thinking about how to make life better for themselves and those they love. There is a Hero inside of you when you drive to work and think about how you are going to perform toward a hoped-for promotion and make a nice Christmas for your loved ones. There is a Hero inside of you when you go home and assess what you have accomplished and what you still want to accomplish. There is a Hero inside of you when you cook dinner for your family and try to give them the best nutrition. There is a Hero in you when think about how you can make it better. There is a Hero in you when you lie down at night and reflect on how you are going to solve your problems and that of those you care about.  Whether you acknowledge it or not, you are constantly striving for a better future for you and your family. YOU are a Hero, every single day. So is the very environment that encourages us to dare. From the trees that offer a branch with which to climb to the stars the light the path in darkness; and so on it goes – Heroism – to the very diligent and hard-working worms that feed the soil that makes the food that sustains us.

Kathys hero sunriseAs I write this long-winded prose to the dear souls that are still reading, I want you to know something, I just replaced every word ego in the previous paragraph with Hero .

I encourage you to look back up and see why I don’t like the misuse of the word ego anymore. And here is the explanation of why:

Ego became used quite frequently by the famous psychologist, Sigmund Freud. Ever Since he decided to attribute the word ego to the part of our brain that is cognizant only of itself and chose to define it as something that resides in total denial of what is outside of us, ego has been adopted in our modern cultural language as something that means only selfishness. It points the finger and makes a judgement about other’s egos. So, we all walk around with this ego that we’ve been told we have, along with the associative guilt that comes along with making sure that it does not get “out of control” with boastfulness and pride. If you think about it deeply, it does almost everything to our minds the way the word “sinner” does. Which is silly, really. There is nothing wrong with being proud of something GOOD that you do to benefit others.

If I ever start a linguistic trend in this world, it would be to ban the word ego altogether and call this thing inside of us, the one that helps us survive for our families and those we love: the Hero. I think this very word is what makes us Human.

 

we are better than this

Heroes are Humans, and Humans are Heroes. We are humble, kind, compassionate, giving and hard-working. We lift each other up and find ways to solve problems. That’s what we do.

If we are not solving problems,  we are wasting our talent.

In my journey to create and share recipes for people with all kinds of severe food allergies, I have met families who have been met with sarcasm and spite as they ask others in the community to support their efforts to keep their child safe or from hurting. We have experienced it ourselves. We have met families whose children are suffering from symptoms but who cannot afford to have the non-allergenic foods that would allow their children to participate in social gatherings and avoid the emotional pain of exclusion. We have watched children with food allergies, including our our son, sit and watch as their classmates enjoy cupcakes. These children no longer go to pizza parties, birthday parties and restaurants because it is too painful. It is easier to staying home with an enthusiastic parent trying to recreate a favorite treat to make it all better. These children have to give away 90% of the candy they get in their trick-or-treat bag. They have to choose between saving their social standing among peers or saving their own life, a particularly hard thing for preteens and teens to do, especially when it is so important to learn the social nuances of life and work.

child not included

So, this brings me back to defining the direction of Safe Eats. With the help of caring people both near and far, we have teamed up to work on the following things:

  • Help our son and his friends participate in social gatherings, rituals, festivals, dinners out and holidays around the world.
  • Help those who have been suffering too long finally receive diagnosis and treatment.
  • Raise compassion among the communities that need to support those parents who have held their child’s hand in the ER and wondered if they were going to have to bury him or her because of a simple, accidental bite of the wrong cookie.
  • Contribute to other organizations that are seeking a cure and contributing to education.
  • Educate where we can and do everything we can to make the world a safer place.

As my family struggles to make it economically, we realize how lucky we are and we realize that we need to be stronger for those that could benefit from what we’ve learned. We must exercise the ideal of hope we cling to. We must make the world a place where food isn’t a death sentence for anyone. We MUST make it more affordable for a child to have a safe cupcake and enjoy life. This is what Safe Eats stands for. We must all be Heroes.

If I would ask any reader to do anything after reading this article, it would be to ask yourself one question: What you would you say to yourself if you were your own child? What do you stand for? What does the Hero in you want to do?

missing the point

Can you ask both yourself and your real or inner child about the legacy are you going to leave here beyond your life? How will you hone the talents and strengths given and invested in you and make good use of them?

Lastly, How can we all inspire each other to add a new dimension to the Hero that already exists within all of us?

If you do nothing else, replace the word ego, with HERO. Inspire others to do the same.

And Then… OWN IT.

Finally! A Super Safe Root Beer Float!

Root Beer Float

Many of us have wondered, “Is Root Beer gluten-free?”

Now, some of you may be wondering why one would even have to ask. It’s a beverage, not bread. However, most dark colas are made to look that way with an ingredient called caramel color.

Caramel color is tricky to know with certainty whether it is processed using wheat or not. Even with the 365 brand, it stated that the caramel color was made from cane sugar. But does that mean it’s only cane sugar? There was no gluten-free indicator on the bottle and I am wary when they don’t label something as gluten-free. So, my fiancee’ (who is quite the thorough food investigator) wrote an email to Whole Foods to ask about the processing of the caramel color from cane sugar in the 365 brand sodas.

I must say that given the bit of push-back that I usually encounter when I am calling or investigating food ingredients, I was quite pleased when he received this initial response:

“Thanks for contacting us.  I have a four year old with life threatening food allergies as well, so I know exactly how hard this can all be, and especially how important it is to us as parents to make sure they can have as inclusive and “normal” a diet as possible.  I will reach out to the soda vendor and see what information I can get about the sugar.  I doubt I hear back from them today, but I will let you know as soon as I do.

Just for the future, if you have any other questions about our private label line, you can email me directly at customer.questions@wholefoods.com.  It’s a little more direct than the web site, if that is easier for you.

I will be in touch as soon as I hear from the vendor on the sugar.”

That was a super friendly and helpful response!!! We were happy to wait a few days. When we heard back from the representative, this is what we received:

“I heard back from our vendor and there is no possibility of gluten in the caramel coloring; they even have a gluten free certification on file.  I hope this helps – please let me know if you need anything else!

If you have any further questions please use our online response form.”

So, with that, we called in my son and told him the exciting news! Today, we paired it with our homemade coconut milk non-dairy ice cream and made a root beer float. He had never had one before. He absolutely loved it.

What a great way to celebrate the joy of safe eating!

Root Beer Float 2

Guest Author’s Inspiring Story of New Motherhood and The Discovery of Multiple Food Allergies

Melissa and Boys2

My Story

By Melissa Mastrogiovanni

I’ve always wanted children. In fact, there was a time when I was only going to college because it was expected. I didn’t know what I wanted to be as a grown-up. But I did know I wanted to be a Mom. When you’ve wanted something so badly, and that day finally comes, you hold your child in your arms and your life completely changes. I always say that pregnancy is just gently preparing you for what your life will be like after your child is born. For me, pregnancy was full of roller coaster emotions, constant morning sickness, difficulty sleeping, and complete with utter happiness. Early on in the pregnancy, I craved Nilla Wafers and milk. I was going through a box and gallon of the stuff every three days! It is amazing to look back at the things that got me through my pregnancy and that what made me feel good are two things that could now kill my child.

When my son, Bradán Sean, was a young baby, he had eczema and baby acne. This is a common occurrence. The acne faded and we learned to control the eczema with Aveeno Eczema lotion at every diaper change. When Bradán was 4 months old, my husband, Jason, and I started noticing red splotches and hives that would appear on his body. We thought it was the heat.  When he was 6 months old, we started introducing him to formula (although he was breast-fed, our pediatrician wanted him exposed to formula). Bradán rejected it every time. He would literally spit the bottle out as soon as it touched his lips. So we pushed. We tried sneaking it in to his food. When we put it in his cereal, he would take a bite, and then sign (we were teaching him ASL) “all done.” So we pushed even more by getting a sensitive stomach formula and finally snuck it into some cereal that he actually ate. That night, my husband and I were up all night with him as our son threw up and got lethargic. We thought he had a bug that was going around. Only months later did we understand that our son was having a severe allergic reaction. It was in the next several weeks after that incident that we put more and more clues together by watching his reactions to things he was eating. He would often sign “all done” after eating very little if anything of some new foods. We also realized that after we would eat cereal and kiss our son, he would break out in hives where we had kissed him. Imagine seeing your son suffering after a kiss from his parents! We finally pushed for our pediatrician to run blood work at 10 months of age.  Our pediatrician warned us that it was unlikely that he had allergies because he was breast-fed, and that the result of the blood work might be unreliable on a baby so young.

A week after his blood work was done, our pediatrician called to tell us to make an appointment with an allergist and that the allergist would go over the results of the blood work. We made the first appointment at around 11 months. My husband and I took off from work and brought our son in to see the allergist. She reviewed the results of the blood work and asked us about what reactions we were seeing at home.  She then explained that our son is highly allergic to milk and egg whites. She wanted us to schedule an appointment to do a skin test. But before we left, she wrote us a script for an EpiPen and had us practice on ourselves about five times each. We left the office feeling overwhelmed and out of sorts.  Bradán’s first birthday was coming up and we didn’t know what we were going to do for his cake (the most important thing on our minds at the time!).

We made it through Bradán’s first birthday with an altered chocolate cake that wasn’t horrible…but certainly wasn’t great. On his first birthday, we also took him in for his first skin test. The allergist wouldn’t even test milk because of how high his blood work was and our stories of his reactions. Egg was wiped off after five minutes. It was clear: he was allergic to milk and egg whites. Our allergist encouraged us to try eggs baked in foods such as cookies and see if he had a reaction. Other than that, we were instructed to avoid his allergens.

In the next two years, we found ourselves sending our son to the hospital for anaphylaxis a total of three times (two times I administered epinephrine). The first time (shortly after finding out about his allergies), we were uneducated on food allergies and were also in partial denial of how serious the situation was. Bradán is technically allergic to egg whites. So making hard-boiled eggs and giving him just the yolk should be fine, right? After one bite he was vomiting and he became tired and lethargic because his blood pressure dropped to dangerously low levels. But we were unaware. This isn’t like the anaphylactic reactions you see in movies. We asked, “Is this what it looks like?” “Should we use the EpiPen?” We chose not to use the EpiPen on him (big mistake). Luckily we lived across the street from the hospital at the time so we decided to take him to the ER. There they gave him epinephrine, steroids, and Benedryl. The doctor ever so kindly and non-accusatorily reminded us to never hesitate on using the EpiPen. He explained that it will not hurt him and that it is more important to be safe. Lesson learned. The next time I had to use the EpiPen, I did not hesitate. And the third time, I really did not hesitate. Yes, two more times in two years.

When we experienced our second anaphylaxis event, we were in the middle of a move and we think he might have gotten cow’s milk instead of his almond milk. His poor face puffed up with hives and he was red all over. As soon as he vomited, I calmly (at least I tried to be as calm as possible) told him that I was going to use his EpiPen (he plays with the trainer and watches me train everyone who comes into the house, so he wasn’t afraid of it). He did amazing! We were then rushed to the ER. I think we were there for about six hours where (same as the with the first ER visit) he was given Benedryl and steroids.

The third time (and so far, the last time) we experienced an anaphylaxis event was because I gave him a quarter of a walnut. No tests had come back that he was allergic to walnuts! But at two and a half years old (with his sleeping four month old brother in the other room), he started having a reaction. By the time we got to the ER, he was red and swollen all over his body and his blood pressure was dropping rapidly. My husband was at work at the time, so it was just me and the boys. This reaction resulted in a second dose of epinephrine and a 24 hour visit to the hospital which was not fully covered by insurance. Being in the hospital was both emotionally overwhelming and a frustrating experience for us. We were there for a food allergy, and it was nearly impossible to get him a safe meal. I was literally in tears trying to just get him a peanut butter and jelly sandwich or a hamburger without the bread!

After those three anaphylaxis events, we thought we had his allergies well-managed and under control. We were living our lives as normal.  My husband and I were getting adventurous with our food (with safe ingredients), and we decided to cook a lamb dish. While we were cooking, my son was in the other room, watching a movie, and suddenly started having a reaction: heavy breathing and coughing. Fear set in and we reacted as quickly as we could. We halted the cooking, cleared out the food we were preparing and gave him his inhaler. When I called his allergist, I told her that the only ingredient that was different was the lamb. She said that we could certainly do a skin test on lamb, but a lamb allergy was pretty uncommon. But I needed to know and took her up on the offer to do a skin test on the lamb. It was confirmed: My son is allergic to lamb! Lamb – of all things!

So, as of today, Bradán is allergic to the following: milk, eggs, tree nuts, lamb (anaphylactic to all of these), and latex. We also avoid peanuts and sesame due to cross reactions (both of these allergens are new to us and have recently been discovered through mild reactions). Unfortunately, we have learned about all of these allergies the hard way.  But as bad as it is, I read about other kids on my Facebook food and allergy support groups and I realize that I can’t complain. With these allergies, I am so thankful that the vegan culture is as active as it is because it has made allergen-free foods (for us) available, which has made it easier to cut the allergens out of our diet.

But living with all of these allergies is an adjustment – A BIG one. I was never the type of person who read labels in the grocery store, but now a 15-minute shopping trip turns into a 45-minute one as I read every label (even if it is the same brand I always get because food manufacturers can change ingredients without warning).  I am forced to zigzag through the store to find the specialty food (because the soy butter can’t be found with the peanut butter and the frozen Van’s Waffles can’t be in the freezer next to the Eggo Waffles). It is not uncommon for me to get strange looks when we go out to eat because we have to completely wipe down the tables and chairs of where we are going to sit. Servers and other patrons often roll their eyes at me when I ask to speak to a manager before ordering food. But this is my reality now. This is my family’s reality.

So we have adjusted. We have learned all that we can about food allergies. I read articles and forums nightly to keep informed of legislation, research and to anticipate future scenarios. We have done a Food Allergy Walk and hope to do more in the future. My son wears his medical alert bracelet (bright orange) every time we go out of the house and is able to explain to anyone who asks, what it is for. He knows all of his allergies and backs away when other kids have food around him. If someone offers him food, he knows to come ask Mommy or Daddy before he eats it. He is amazing!

A year ago, we welcomed our second child, Caolán Michael, into our lives. When I was pregnant with him, I had two big fears. The first fear was that I would get overwhelmed with two kids and that my distraction with managing both kids would put Bradán’s life in danger. With food allergies, you need to be vigilant every second of every day. You can’t let your guard down and I was afraid that I would. My second fear was that Caolán would have the allergies that Bradán didn’t have. We had gotten used to living without milk and eggs, but what if we had to eliminate soy, too? So far, Caolán has eczema (it didn’t show up until he was a year old). Also, he has already experienced respiratory problems and probably will have asthma.  But no food allergies as of yet!

Our families have been extremely supportive and mostly “get it.” Although there have been a few frustrations, we consider ourselves the lucky ones. With our families, the safety of my child outweighs the comfort and convenience of the rest of the family. We know that other parents with children that suffer from food allergies are not as lucky to have such care and support.

Recently, while staying at my sister’s house, I was sitting at the dining room table with my sons, my niece, and my two nephews and eating an allergy safe meal. My niece and my two nephews were giving up their butter and scrambled eggs and cow’s milk to include my son in the meals and keep him safe while at their house. They usually do this willingly and fully understanding why they are making the accommodations. But this night, my nephews were discussing how they wish my son didn’t have these allergies so that he could eat all the good and healthy stuff.  I could have taken that to heart, but I found that it was an opportunity to teach them more about living with allergies. I told them that my son actually eats healthier than many kids his age because of his allergies. I included my son in the conversation and asked him if he minded his allergies.  He proudly said “no.” I told my niece and nephew that we say “c’est la vie” when we talk about food allergies.  We listen to Kyle Dine, and one of my favorite songs is “c’est la vie.” With each conversation about food allergies, they learn and understand more and more. They, in turn, are becoming advocates for their classmates and friends.

“C’est la vie.” Such is our life. There is no wishing it were something else. It simply is what it is and we will make it a happy one.

We are hopeful that he will outgrow his allergies, but we live our lives as if he won’t. We often get comments such as “poor boy,” but that isn’t how we look at it. He was our first child.  And this has been our only experience.  We don’t know what it is like to raise children without food allergy considerations  – and he doesn’t know what it’s like to live without food allergies.  And he is happy! Very happy! He lives a full life. Of course, as I write this, he is screaming to get out of a time-out.  So you see, it’s all a very normal life. We know we haven’t reached the challenges of school yet, but we are trying to establish a healthy foundation for Bradán and our family so that we can meet those challenges.

All of that said, no amount of preparation and positive perspective erases the underlying fear of the “what-ifs.” And every day, I am surprised with a new scenario to consider.  Shortly after my second son was born, we were at the mall and I was letting Bradán play in the play area. I bent down to put my newborn back in the stroller and when I looked up, Bradán was gone. I was positively frantic – my fears realized. I finally found him walking back towards the play area and I noticed that I had forgotten to put his medical alert bracelet on. It’s a mistake I rarely make – now. Months after that moment, I’m still sometimes beating myself up for not only losing track of him, but also terrorizing myself with thoughts such as “What if someone, while trying to comfort my lost child and gave him milk or ice cream or a cookie?” or “What if he went into an anaphylactic shock and they didn’t know what was happening?”

There is also the fear of leaving your child with another caretaker. We are not a family that doesn’t leave our child or choose to not go out to eat. We have chosen to do these things…but with great fear, caution, and preparation. I recently had to leave my sons with my sister (it is pretty much the safest place I can think of for them to be outside of our house). But I was in tears when I left him. “What if something happens?” “What if I am too far away to get to him quickly?” These are the thoughts that run through my head.

While I can barely manage the anxiety that comes with leaving him with a trusted family member, there are trips I have chosen not to take because I just can’t bring myself to be that far away from my son should he accidentally ingest something that causes anaphylactic shock. A year ago, some of my friends were going on a cruise and invited my husband and I along. We simply could not be out to sea, and not be within quick response to our son.

Yes, there are sacrifices that must be made. But they can be made. And in the larger scheme of things, they are insignificant compared to his safety and well-being. It is simply his life. It is our life. And really, I could never ask to change a thing. Bradán is the wonderful boy he is today because of what he has already gone through. It has made him stronger and wiser than many children his age. I am so proud of him. So proud to be his mother and so proud of the person he is growing up to be.