Honestly, that’s a statement I never thought I would make. Or one I wouldn’t actually follow but I did indeed cry over sweet bean eggs recently. Let me explain. As I’ve said, our oldest has severe allergies – food, medications, environmental. You name it, there is definitely something on his list. It’s something that we’ve known since he was six weeks old and confirmed at a year.
Egg was on the top of this list so over the years we’ve identified alternatives and substitutes that are safe. Just Egg quickly rose to the top of the list. It’s a product that is actually fermented mung beans but scrambles similarly to eggs, has patty versions that made amazing egg sandwiches and even breakfast burritos. It’s been such a lifesaver over so many years and meals and recipes. It gave him the opportunity to indulge in foods that he would otherwise not have been able to and that made my mom heart so happy. He started calling them his sweet bean eggs, hence the title. Just Egg has been a staple in our fridge for years as a result of that egg allergy. But that changed recently.
Life shifts with allergies and there are innumerable facets of your life impacted in unexpected and challenging ways. And I say that from the perspective of someone who is only helping another human being manage the process. I’m not living it. Our son is one of the most incredible human beings I know. Even at nine. He navigates a world, I can only understand from the outside. He’s the one who regularly experiences the disappointment of hearing “no” to so many foods he wants to try, restaurants he wants to visit or events he wants to participate in. And that’s just the food aspect of it all. Allergies permeate well beyond the walls of our kitchen.
We have (and by we, I mean he has, but my husband and I manage the appointments for) a pediatrician, allergist, gastroenterologist, dermatologist, rheumatologist, ENT and something I’m sure I’m missing at this point. Typically, we end up with new medications to try, worsening of symptoms, more allergies to add to the list. And with each change, he manages the news with more courage and grace than so many people I know. At nine. And I’m not saying there are not tears or disappointment or frustration. There certainly are, which is such a reasonable reaction and to be expected. But I am constantly in awe of how he continues to pick himself up and move on, even on the most difficult days.
This is the kid, who watches Gordon Ramsay shows religiously to discover new recipes to try. Prepares his (sweet bean) eggs as close to Ramsay as he can. Begs me to buy Max the Meat Guy jerky nearly every day. Soaks in all Nick DiGiovanni’s cooking. Requested DiGiovanni’s cookbook be part of his easter basket. Tried sashimi tuna a few weeks back. Beef carpaccio at a recent birthday dinner. Has indulged in alligator and frog legs and so many new foods that even I’m not adventurous enough to try. Jumps into the kitchen to help cook dinner all the time. He has a palette I could only dream of. Started a cookbook with his brother. Wants to open an allergy friendly restaurant. And balances all his culinary adventures with an understanding of the strict limitations those allergies bring to his life.
In the last few months, he’s done a endoscopy to rule out EOE, MCAS and other issues. We’ve tried multiple medications for his GI issues. Even landed on one that has helped more than the others, but his belly issues are still a struggle. We’ve switched up corticosteroids in hopes of helping the constant itching. Learned that there is an allergy to heat which makes so much sense. Semi-completed a sleep study. All this to say that allergies are not a face value thing. There are so many layers. A multitude of additional health issues that can be related. The “allergy march”. Allergy. Eczema. Asthma. There is nothing simple about being in the world of allergies.
Several months ago, we navigated ourselves to another scratch test appointment. Scratch tests are one of the indicators used to identify potential reactions to allergens. Blood work, another necessary part of the tests, happened earlier. Combined, every year, we hope for the numbers to decrease and the chance for him to add new foods to his repertoire. It hasn’t happened for a while. The last one was chick peas which opened him up to homemade hummus (store brands typically have tahini, which is sesame and on his allergy list) and roasted chick peas. A win but chick peas don’t find their way into every day foods as much as some of his other allergies. About two months ago, we finally got to the message that we were waiting (and so desperately hoping) for.
A message from the hospital popped up and I soon as I saw what it was, I teared up. I immediately made my way over to him and let him read the message from the doctor himself. He made it halfway through the first sentence before he handed my phone back. He looked at me and just said, “I know what it says.” So matter of fact. So confident. Within seconds, the widest and brightest smile spread across his face. These are the moments I live for. The recognition that his life has pivoted in the most incredible way. That a million doors just opened to his world and he feels every one of them.
“The allergy testing to egg was reassuring. The skin test was negative, and the allergy blood test was very low with an IgE level of 0.17. Based on these results, egg would be reasonable to introduce at home or through a supervised food challenge in clinic if preferred.”
As soon as he read that message, he was ready to jump right into the world of eating eggs. Scrambled eggs. Over easy. Hard boiled. Mayo. No need for a supervised food challenge. At least not in these circumstances. I was confident in the doctor’s assessment and our ability to administer epi should we need it (but again I was confident we wouldn’t have to cross that line. At least I was telling myself that).
We were down the Cape when we got the message, so I told him as soon as we were home, we would trial eggs. I wanted to be at home. A place where, if 911 was needed, I know EMTs would be at our home within a matter of minutes. Close to the hospitals I would want him evaluated at. Because as much as I’m confident we wouldn’t need the help, part of me recognizes that’s the mom in me hoping for the best. Ignoring the worst. Hoping that injecting our son with a life saving medication at the onset of a life threatening reaction would never again be a part of our lives. But that is not the world we live in. I know he was ready to pack up and go home the second I set that requirement but we made it through the rest of the weekend.
We navigated our way home and we had not even unpacked before he was begging to try eggs. Although, he was ready to jump into the deep end, I wasn’t even sure I wanted to dip my toe in the water. Excitement aside, trialing foods is just that. Trialing. It’s giving him the green light to try a food that even a year ago would have immediately sent him into anaphylaxis. Trial and error is not something my brain typically associates with allergies. I want to be sure. I want to know that the food I’m giving my child is going keep him safe. But there is no guarantee with a trial. Guarantees are not our reality and I had to remind myself that I trust in the doctors he sees and their evaluation of where he was with things. So we did exactly what he wanted. We jumped in.
First up that day, over easy eggs. One bite in and it was a no go. Hard pass on the over easy eggs. Not because he had a reaction, but because it was not a win in the taste category for him. Since he had a solid bite, I did make him wait a decent amount of time before I agreed to go for round two. Even if he didn’t like the over easy version, I still had to make sure that the bite he had would not, in fact, cause him to have a reaction. And in the interim, the period of waiting, I cried. I’m not sure if it was even intentional or the build up of 9 years of waiting for a moment like this and still having to wait a few more to ensure he was safe. That wait time is painful and tense. Staring daggers at him in the most nonchalant way. Watching for hives. Listening for the constant sneezing. Keeping an eye on every movement to make sure I’m not missing any telltale signs of anaphylaxis. Luckily we made it long enough that I was comfortable letting him move onto another option. Scrambled eggs were next and they were a massive hit.
Since that message and two successful rounds of trialing eggs, he has tried over easy and scrambled eggs. Deviled eggs. A sausage and egg McGriddle. A bacon, egg and cheese bagel. A scramble from our local diner, topped with the biggest pile of beautifully scrambled eggs. For the first time ever, we went to dinner at our favorite hibachi place and his dinner didn’t need to be made separately. He indulged in fried rice with eggs. And I have pics of nearly all of those moments. And I shed tears at almost all of them. Quietly. Out of view. Watching your child’s life change in what, from an outsider’s perspective, seems to be benign moments – a child eating a bagel sandwich or fried rice at a hibachi restaurant – but for him (and as his mom, me) are life-altering, is something difficult to put into words. But it makes you cry. A lot. And often.
Tears aside, I hope I tell him enough how proud of him I am for navigating these challenges, for tackling them head on and for never giving up. More so, I really hopes he actually hears and absorbs those words. However small or big these changes that he gets to experience are, he has put in such incredible amount of work to get himself to that point. And every time we go grocery shopping and choose a dozen eggs over two or three containers of Just Eggs, I will remember every separate meal that had to be made, every time he was frustrated by the inability to indulge in an actual scrambled egg or donned gloves in order to crack eggs and participate in baking. And I will revel in the fact that in his current world, those limitations are gone.
Apologies to Just Egg. You carried us through so much and we honestly couldn’t have done it without you, but I’m proud to say we no longer need you. It’s not you. It’s my son. And real eggs.
Too Much Laundry, Not Enough Wine 