When I told my husband that I was researching the stages of grief for my very first blog post, he thought I was being overly dramatic.
Perhaps he had issue with the fact that (he thought) I was comparing the death of a human being with an allergy diagnosis. But that would be insulting to anyone who has experienced the death of a loved one. And, I promise, that’s not a comparison I’m trying to make.
But, for me, learning my little baby had severe food allergies that would limit his young life in so many different ways felt like the death of the future I had dreamed for him, and for us. How random that this had happened to us. How ridiculously unfair.
It’s true, though, that I went through the 5 stages of grief before eventually accepting his diagnosis and what that meant for his (and our) life. It went a little something like this:
1. Denial
While pregnant, one of my biggest concerns was having a picky eater. I somehow didn’t worry about sleep at all (first time mama here!). But if sleep didn’t cross my mind, I didn’t even consider the possibility of a food allergy.
Because I believed beyond a doubt it just wouldn’t happen to my family.
I liked food too much. So did my husband. Before I became a parent, I happily spent more money wining and dining than shopping for new purses and shoes. And as a new mom, I excitedly attended Toronto’s first-ever Babylicious, naively thinking I’d be back next year, mini foodie in tow.
So when we started introducing solids to our guy at 6 months, and our family doctor told us to give him a lick of peanut butter to see if he had a reaction, I didn’t even ask her what to do if he did react. Because I didn’t think he would.
Spoiler alert: I was wrong.
The moment our baby took that first lick, he broke out in a rash around his mouth and hives across his face.
The thing is, I still wasn’t that concerned. We gave him a shot of Benadryl and convinced ourselves that the right thing to do would be to give him small tastes of pb over the next few days. So he could work up an immunity.
Luckily, I asked a group of local and lovely moms for advice, and the response was unanimous: Do not expose your son to peanut butter again. Make a doctor’s appointment. See an allergist. Get him tested. His next reaction could be life or death. Don’t risk it.
Oh.
The responses were a bit of a reality check, but I have to admit, a small part of me believed his allergy test would come out negative, that the hives had just been a fluke.
Instead, he was diagnosed with a peanut and tree nut and egg allergy.
Okay, now I was angry.
2. Anger
I was angry that life was so unfair. I was angry that there was no cure. I was angry that I was raising my son in the wrong era. (Could I please go back to the 80s when food allergies were pretty much non-existent?)
And I was jealous too. Jealous of people whose kids would get to lead normal lives. Jealous of every parent who didn’t have to read the ingredient list on every single product for, well, ever. Jealous of our nieces and nephews who lived in Ireland (my husband’s home country), allergy-free.
3. Bargaining
Now it was time to blame myself, and think about all of the things I (or we) could have done differently. Maybe we should have spent the first year of our son’s life in Ireland, where most food was pretty much organic (without needing the label). Maybe I shouldn’t have eaten all that peanut butter throughout my pregnancy and for the first 6 months of my (breastfed) son’s life. Maybe I should have brought more dirt into the house. Maybe I shouldn’t have sterilized his bottles for as long as I did. Maybe we should have gotten a pet. Maybe, maybe, maybe. What if, what if, what if.
4. Depression
Soon enough, I was just plain sad. Imagining what our lives could have been like and acknowledging the new reality felt a little like a broken heart. There were so many things our child would not be able to experience. He’d have to sit back and watch as his friends enjoyed birthday cake and Christmas cookies. We’d have to quarantine his Halloween candy and Easter chocolates. He couldn’t order off most restaurant menus, so we’d either have to bring his own food or stay at home. We’d have to worry about him on his first day of daycare, elementary school, and later, university. We’d think the worst when he was off to the playground, or when he was on a flight surrounded by people with no empathy. We’d have to worry that someone would mistakenly assure us that the food he was about to consume was safe—our parents, a friend, a teacher, a waiter—and inadvertently put his life at risk. We’d have to carry an EpiPen forever. We’d have a lifetime of worrying.
Unless…
5. Acceptance
This is where this website, AllergyBites, comes in. Coming up with an idea that (I hope) will minimize some of the worry has made it a bit easier for me to accept my son’s food allergies. If we can make this idea work, a life with food allergies won’t seem like such a heavy burden to bear. At the very least, we can start going out to restaurants again, enjoy some new foods, and have a little bit of fun!
What’s your story?
Did you go through (any of) the 5 stages of grief when you learned your child had a food allergy? Let other parents know they are not alone! Tell us about it in the comments below.
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I actually loved this bc every stage was bang on. I also agreed with the part about the husband. They do see things differently. For me it was the end of
The world at the beginning. I gutted out our house from anything unsafe as my husband thought I was crazy. I made sure anyone that touched anything he was allergic to, washed their hands and
Brushed their teeth. I think every new part should read your write up so they know what their feeling is ok
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Thank you! I’m glad to know that my post spoke to you. And if it can somehow help parents who are new to food allergies (if only by making them realize they are not alone), then I’m really glad I decided to write about what I was feeling. Please feel free to share this with anyone and everyone you know who may be going through something like this.
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Thank you for this. My husband and I are both stuck in 4 most days. Not so terribly depressed, maybe, but everything your wrote is right on. Our kid is dairy (which I never realized before this is in so many products!) and egg ANA. Everyone has dairy everywhere, no dairy-free zones. It drives me crazy and I feel light-headed every time I have to think of her allergies. You are definitely note alone.
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It’s so hard, isn’t it? I feel the same way about nuts/tree nuts. It’s like every second product has a “may contain” warning on it. I often feel like screaming: “Do they or don’t they contain nuts?! Make up your mind already!!” Ugh. Anyway, I can imagine it must be even tougher with no dairy-free zones. 😦 I hope you are able to make it to stage #5 soon. How long have you known about your child’s allergy?
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Gluten – first taste of toast at 7 months caused hives and wheezy breaths (now it’s a trip to the ER)
Eggs – the next day we tried scrambled eggs – which resulted in hive and projectile vomiting
we now know that we have gluten, egg, dairy, nuts, fish, paprika (any thing labeled “spices” can’t be eaten) and corn sensitivity.
BUT my 5 year old is HEALTHY!!!!!! Because we can’t eat all those items, he eats tons of veggies and proteins the only time he has been sick really is when he eats something he shouldn’t – unexpectedly.
We have a great probiotic and that has helped, too!
Vacations are harder (because anything prepared at a restaurant with meat usually has paprika) but we just bring a crock pot, cook in our room and then take the meal with us to a restaurant. You DO what you have to do and forge ahead! ❤
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It’s wonderful to know that despite everything, your little one is thriving! That’s probably because food allergies force us to meal plan ever so carefully, to read every label, to make foods from scratch when possible, and to avoid a lot of the icky, processed stuff.
I love that you bring a crock pot on vacation with you. Something we will definitely consider for future trips! 🙂
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This is so wonderfully written and evocative, Kathleen. I felt along with you as I was reading this.
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Thank you so much, Maryam. That’s so kind of you to say. ❤
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Hi Kathleen,
Great article. My daughter is now 7, diagnosed at age 2, when she ate her one and only peanut butter Ritz mini cracker and broke out in hives everywhere.
I think that most of my challenge in the beginning was educating the people in our lives. It was almost as though people thought I was overreacting and being crazy. I, too, worried about her well-being as she got older, her first day of school, Halloween, birthday parties, how her friends would treat her. But I must say, because of the awareness around nut allergies, my daughter’s friends’ parents have been so accommodating regarding her peanut allergy (buying peanut free snacks and cake for their parties and asking me to check the labels before I leave) or I just pack her a lunch and treat in lieu of cake to bring with her to parties. Even strangers on planes have been great, asking me if it’s okay if they open their granola bar that says it may contain nuts. So as far away from our goals of raising awareness as it may seem at times, I feel that great strides have also been made – regarding peanut allergies at least.
I also love that we are living in a time where we are so connected and can build community so easily.
Thank you for posting and your work on AllergyBites!
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Hi Connie, I totally get what you’re saying about being made to feel like you’re overreacting. Initially I felt embarrassed to even say anything, but I’m getting better with family and friends as time goes by. That’s wonderful that your daughter’s friends are aware and accommodating. I’m hoping the same for my son when he eventually goes to school—he’s still just a toddler!
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100% this, I’m not at acceptance yet. I’m go between anger, jealously and depression. My son is is anaphylactic to dairy and egg, sensitive to soy. It’s in everything. Beyond all of it at the moment I’m so jealous of everyone who doesn’t have to go through what we do every day, it was recently his first birthday and I was too scared to enjoy it because I was worried about the food. I’d made everything safe for him, but I was scared that people didn’t like it, or what if they’d eaten egg this morning and hadn’t washed their faces, what if, what if, what if. I need to stop feeling like this, I’m exhausted.
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Hi Catie, I totally feel you. To be honest, I think I go through temporary “acceptance” phases and then depending on the day/week/month, I fall back into one of the not-so-fun ones. You’ll see what I mean if you give this more recent post a read: https://allergy-bites.com/2017/05/25/how-raising-a-child-with-food-allergies-impacts-mental-health/
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By the way, have you joined this wonderful support group? https://www.facebook.com/groups/GTA.Allergy.Parents/ Or the AllergyBites community? https://www.facebook.com/groups/allergybites/ If not, please do! We all encourage one another when we’re feeling like this. It’s like our own food allergy ‘village.’ 😉
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A final thought: If you are available on Monday, August 21st, you are welcome to come to a free talk at Jill and the Beanstalk, hosted by myself and a food allergy therapist. https://jillandthebeanstalk.ca/collections/workshops/products/food-allergy-workshop
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I’ve joined the support groups on FB, unfortunately as much as I’d love to come to a talk – I live in Australia, so it’s a bit far to travel. I’ts hard here, because there’s a MASSIVE amount of allergies, but people don’t really seem to want to talk about it. There’s so much misunderstanding about allergies, even the women in my Mothers Group (that I know don’t often go to) asked how I “caused” the allergy.
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Oh, I didn’t realize you’re in Australia!! I’m so sorry to hear that there aren’t any good support groups and that people’s understanding / empathy is so low over there. The world definitely needs more education / awareness when it comes to food allergies! Well, feel free to vent in our Toronto support groups anytime you need a shoulder to cry on. We’ve got your back! 😉
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100% true. I’ve been through all those stages. Sometimes more than once when new allergies have been diagnosed. It’s been 9yr for our family.
I refuse to let it define my children. They are awesome kids (who have food allergies)!
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Yes! Love that. 😀 I also don’t want my little guy to be defined by his food allergies. He’s such a curious, fun-loving, adventurous, passionate little guy. That’s what should define him.
And wow, 9 years?! You must be a food allergy pro by now. 😉
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