Welcome, Mamma Crew!
If you remember last week, I told you the story of how we found out that Emmy and Andy had a tree-nut allergy. Of course, Emmy’s tree-nut allergy was far, far more severe than her twin sister’s.
It was a life-changing discovery. What we didn’t initially realize was what an uphill social battle this was going to become. We had absolutely no idea of the social ramifications of her tree-nut allergy. And I forewarn you, if you have kiddos around, there’s going to be some explicit words used as I tell you some of these stories.
I think our first hint that we were in serious trouble happened when we traveled to Ohio to my mother-in-law’s house. And I don’t remember where my husband went but it was our first big trip — Michigan to Ohio — with our girls and we packed the Benadryl but we forgot to pack the EpiPens. So I called Walgreens and immediately requested a replacement refill, which they were happy to do.
So my husband had to go someplace and I needed to go pick up the refill. My father-in-law kindly offered to take me to pick-up the EpiPen and as we waited for the refill to be ready, my mother-in-law, my father-in-law, and I had an extensive conversation about the severity of Emmy’s tree-nut allergy. I mean this was an extensive conversation — it must have lasted close to an hour.
So Grandma says when it’s time to pick up the prescription, just leave the kids with me, that way you don’t have to deal with car seats and so on. And it seemed like a good idea, I mean we just had this extensive conversation about the tree-nut allergy issue. So, I go with my father-in-law to Walgreens — it must have taken 15, 20 minutes — and when I get back, Grandma’s making cookies. The girls are happy. They’re helping her, everything is wonderful. And then I see a packet of walnuts on the counter. Are you fucking kidding me?!? We just talked about how walnuts — worse than any other nut — could end Emmy’s life in a matter of minutes!
And I’m floored! I’m floored with the discovery that my mother-in-law has taken out walnuts and has them next to my child, who could die by being exposed to them! So, I said to my mother-in-law (or rather, I asked my mother-in-law), “Why are the walnuts out here?” And she says to me, “Well, we — I decided that we should make cookies.” And I said, “We just spoke about the severity of Emmy’s tree-nut allergies! Why would you expose her to tree-nuts? Why would you put a pack of them next to her?!?” And she says, “Oh! You’re gonna have to remind me every time that you leave me with her.” What the fuck?!? Fat chance of that ever happening again! She has a tree-nut allergy — we just spoke about this for an hour! An hour!
I was furious. Fucking livid! But that was just the beginning. The first in a series of incidents. People think that when your child has an anaphylactic allergy, they have a regular allergy and the worst thing that’s gonna happen is your child is going to get hives. When you explain that your child has an anaphylactic reaction to tree-nuts, they think that you’re overexaggerating. And that’s even after you explain what it means because most people don’t know what an anaphylactic allergy is!
Everyone in our family has heard — repeatedly! — of the dangers of a tree-nut allergy to Emmy. Every single person. And yet, every time someone’s going to visit us, we have to go through the process of re-educating them because you can’t rely on someone else to protect your child. That is the brutal reality when it comes to tree-nut allergies. And there are times when you have to choose not to expose your child to a certain situation.
Thanksgiving is always a dicey holiday for us. There’s pecans, and of course, this is the beginning of nut season and walnuts are everywhere! All the way up until the Christmas holiday is over.
I remember one time we went to Walmart. And they put out these huge bins of walnuts (and by the way, prior to my child having a tree-nut allergy, I was a walnut lover so I always appreciated those huge bins!), we go by this bin — and she breaks out in hives! What the hell?!? She didn’t touch them! She didn’t go near them! But here’s the thing: if somebody touched those walnuts and then they touch an item next to the walnuts, the oil from the walnuts is easily transferred to the item. Yeah. Let me tell you, holidays can be really challenging when you have a tree-nut allergy. So of course, here I am at Walmart and I am Benadryl-ing the hell out of her to make sure that she’s okay. But the list of incidents go on, and on, and on.
Bakesales — there was a bake sale in her private school where they are supposed to be educated on allergies, especially anaphylactic allergies, and I volunteered for the bake sale because I want to make sure that my child is not going to be exposed to tree-nuts. So, I’m helping organize it. I’m helping put everything together and here are the ladies. They want to cut the pecan pie and use that knife to cut the chocolate cream pie. You can’t do that! That‘s cross-contamination! So I’m sitting here, making sure that doesn’t happen. Making sure everything is labeled and thinking, okay, I’ve spent hours in this school going through these whole process, harassing these people who absolutely resent the fact that I am telling them we really need to be careful with tree-nut allergies (and by the way, my child was not the only child with tree-nut allergies in that school).
So everything is organized, everything is perfect. We pick up friends of the family, we come back with the kids. The kids are enjoying themselves. I made absolutely sure that everything was labeled correctly. There was no cross-contamination, right? I spent fucking hours there! What happens? Oh my God. Huge lesson for me! Huge, huge lesson! We end up rushing Emmy to the hospital!
She had a cookie. The cookie had no nuts, but for all we know, the cookie was baked on a tin-sheet where something with nuts had been previously baked. And that cross-contamination I was so desperate to avoid had happened anyhow. It’s, like, fucking unbelievable! All the time that I spent there trying to make my child safe, trying to make other children safe was for nothing!
So, Emmy was fine. But this time, things had gotten scary, I mean her mouth blew up! And of course, we were completely terrified of her airway being compromised. And here’s the thing: when the allergist gives you that EpiPen, he doesn’t know how your child is going to react to the epinephrine in the EpiPen. First of all, it’s an extremely scary situation because the heart rate is going to increase — but never mind that! There could be physical complications! And the EpiPen itself could create a problem. So here we are rushing her to the hospital, giving her Benadryl, trying to decide whether or not we should EpiPen our child. Later, we found out, if in doubt, you EpiPen!
Now you would think that after repeatedly reeducating family members, especially before every meeting, the problems would end. But they don’t. Flash forward several years later. We are traveling from Florida back to Michigan and stopping in Ohio to visit my in-laws. And we stop at a Kewpee restaurant. My husband loves Kewpee burgers! It’s supposedly the original Wendy’s restaurant (to tell you the truth, the food tastes the same to me but he loves them. Makes him happy!). So we meet there with my in-laws and everything’s good. We eat and everything’s hunky-dory. And it seems like a fun daily reunion. And we’re about to leave and my mother-in-law kisses Emmy on the side of the cheek. We make it to the car. We strap the kids down and I see that Emmy’s scratching her cheek but, you know, I didn’t really take it beyond that, I mean, she’s scratching her cheek — kids do that all the time — and we get in the car. We weren’t even out of the parking lot when she goes, “Mom, there’s something wrong with my cheek!”
And I turn around — and her cheek has a huge welt! What the hell! Seriously?!? Where did this come from? Because of course, the first thing you’re going to think is, it was something that I ate in the restaurant. And I’m going back and as I’m giving her Benadryl — lathering her in Benadryl! — and I’m trying to think: did we order anything, do they sell anything with tree-nuts in them? And of course, we call our in-laws, and my mother-in-law says, “Oh, earlier today, I had eaten a pecan pie.” Seriously?!? Again?!? Are you kidding me?!?
It’s so difficult — DIFFICULT! — not to hate people at that moment. Not to say, “That’s it. We’re done! We’re cutting off ties with you, you psychotic human beings! You keep threatening my child’s life! What is wrong with you?!?” I mean, what would have happened had she kissed Emmy in the mouth? It’s insane! And the thing about it is, of course, my husband loves his mother, I love my mother-in-law — we drove each other crazy, to be honest with you, but I still loved her and respected her — and my children love their grandparents. How do you handle that?
And if you think that’s crazy, we were once in Puerto Rico and there were these little, funky looking coconuts on the floor. And of course, we need to avoid coconuts. But it turns out, these were not coconuts. They’re called Puerto Rican almonds. So the kids are skating, they’re having a great time. And we’re getting ready to leave when Emmy falls on the grass. Now she’s wearing tights; she’s wearing a full shirt but somehow, her shirt lifted when she fell and her little stomach touched one of these Puerto Rican almonds. She didn’t tell me this. We get in the car. We’re on the way home. Then it’s less than, I’m gonna say, maybe two, three minutes away because this is a private community — so no traffic by the way.
So one minute into the ride, she’s like, “Mom! Mom! Mom! There’s something wrong! There’s something wrong!”
I’m like, “What’s wrong?”
“There’s something wrong with my stomach!”
So I turned around, just to take a glimpse. Her stomach has exploded with blisters. Blisters! Not just hives. Blisters! So I’m like, “Oh shit!” and I’m trying not to panic. I have my two kids in the car. I had three other people’s kids in the car and I am one minute away from home and I’m driving as fast as I can get to the house. She is now in tears. Hysterical because it hurts, she’s afraid. And I’m rushing her, taking her clothes off, throwing her in the shower, giving her Benadryl, making sure to wash the area, take her out, lather her in Benadryl. And she’s crying, and then I’m trying my best to calm her down because I know the medication needs time to get into her system.
Ten minutes later, the pain has subsided. I lather more Benadryl on. She’s okay, we’re breathing again. I go back out, clean off the other kids in case they had accidentally touched it, and everything calms down. And I give everybody snacks; I make everybody laugh, get everybody playing, make sure that everybody’s okay. And then go outside and I let myself cry.
It’s scary! It’s scary how quickly things can happen; it’s scary how quickly your child can be in jeopardy. And the thing is, that anytime they’re outside of your home, something could go wrong. It’s part of life! The incredible part was that I had a parent call me and say, “What the hell is wrong with you? You scared the hell out of my child!” Excuse me?!? Are you really calling me for this reason? Because of course, we can’t help the fact that my child has an anaphylactic allergy. The insensitivity of people is amazing! It’s incredible!
I had one parent, who educates themselves by watching Dr. Phil and listening to TED Talks, give me a lecture regarding my home. Because here’s the situation in our home: it is a tree-nut free zone. You bring tree-nuts into our home, you will not be invited back. This is the one place that, no matter what, Emmy must feel safe. Not sometimes, not most of the time, but 100% of the time. Anything else is unacceptable to my husband and me. And we literally have signs outside of our home reminding people not to bring tree-nuts into our home. And there have been occasions, you know. Somebody brought a brownie dish and left it in their car because they saw the sign and they were reminded. We had somebody bring a gift that contained hazelnuts. And the person told us, as they entered the house, and they were like, “Do you want us to go back and leave this in the car?” and we were, like, “Absolutely!”
But here is this parent, who has educated themselves by watching Dr. Phil and listening to TED Talks, giving me a lecture that basically went along the lines of, “You’re over-protecting her, and if you exposed her gradually to tree-nuts, she would come to tolerate them.” Now we have been talking to our allergist every year about her tree-nut allergies and potential therapies out there since we first found out she had them. And there is a therapy for peanut allergies in which peanut allergens are slowly introduced to a child — IN A MEDICAL SETTING! In which sometimes, even then most minute exposure will cause anaphylactic shock. And in some cases, some of the kids that go through this therapy end up no longer having a peanut allergy.
But guess what? That therapy is not available for people with tree-nut allergies. There are a lot of things they are trying to develop for this challenge but they’re not available in the market. And TED Talks and Dr. Phil or whatever you read on the Internet or on Facebook is no substitute for medical advice. Don’t share it with me. Don’t! I don’t want to fucking hear it! You don’t live this reality. We do! We know what we’re dealing with and we are highly educated on the situation because it is a life and death matter in our home.
And by the way, I don’t go and tell you what rules you should have in your home. When I take my child to your home, I make myself responsible for any potential exposure. I don’t make you responsible. And I certainly don’t tell you what the rules in your home should be or how you should live your life. So don’t come to my home and tell me how I should live my life or how I should protect my children. That’s my business. Not yours. And by “yours,” I’m not talking about you, specifically. I know you ladies are a lot smarter than that. I’m talking about this specific incident and the many other parents that have behaved in the same manner. Because that’s the thing about it — people will literally say to us, I kid you not, “This is a real imposition. Your child’s allergies is an imposition on me!” No! I’m sorry? The fact that my child exists is not an imposition on YOU! The fact that my child has a challenge is not an imposition on YOU! It’s a challenge for US! And it’s a challenge that we live with every single day. And we work around it.
For two years, my child has wanted to take equestrian lessons. And it so happened that the equestrian center had a walnut tree by it. No, pardon me it was not a walnut tree, it was a Puerto Rican almond tree. So, this is how we handled the situation: she wore long pants; she wore long sleeves; she wore the riding gloves; she wore her helmet, she wore her boots. We went around the tree. She took her riding lessons. She never touched her face while she was taking her riding lessons in case the riding crop had been exposed. In case the horses were somehow exposed!
Then when we got home, I took her into the foyer where I got her completely naked. She went immediately into the shower. Then I did the same thing with her sister. Then I washed all the clothes not once, but twice. Then I cleaned the gloves; I cleaned the boots; I cleaned the helmet, washed it, Lysol-ed it then went back outside; and whether I took her in our Toyota Tacoma or I took her in the golf cart, I washed wherever the kids and I sat, and that meant including the floor. This was a forty-minute process every time we came back from riding lessons. And she usually took riding lessons once a week, sometimes twice a week. But I was willing to do it. My husband was willing to do it when he had to because we are trying to give her a normal life and understand that outside of our home, there’s always a chance that she’s gonna be exposed. And we have to find a way to live with it and still attempt to give her a normal life.
And that became the next biggest challenge as Emmy got older. Because while Andy’s allergies disappeared when she grew up, Emmy’s allergies got consistently worse. Every time that we went into the allergist, her reaction to tree-nuts became stronger. And not only was the reaction worse every year, but she developed more allergies to more nuts as we went. As parents, we were completely heartbroken. No one wants their child to suffer and no one wants their child to face a future with health challenges.
But many of us have to deal with not just tree-nut allergies but all kinds of health problems. All kinds of physical, emotional problems. And we do the best we can. But at some point, it’s not just us, the parents, that protect the kids. The kids themselves have to learn to live with that challenge. And we as parents have to support them through that.
And if I thought my life had been difficult before Emmy understood all the repercussions in their full magnitude, I had a rude awakening coming. But that’s a story for next week.