We are about 3 months into finding out our now 11-month old has severe food allergies. We have zeroed in on the six culprits that his body is rejecting. Everyone’s journey is different. I am in no way an expert on being a Mom of a child with food allergies. But, sometimes it is nice to know there is someone else right there in the thick of those early days of being new to the allergy world. Here are some things I have learned these last few months.
The importance of being a TEAM. My Husband is awesome. Truly. I mean, I knew this already, but I have once again been reminded of just how great he is. We were both new to the food allergy world and hadn’t known anyone with food allergies prior to our son’s diagnosis, so we have been thrown for quite a loop. Even though I take our son to his Allergist appointments, join the food allergy groups, and do the research because I get to be a Stay at Home Mom, I know that when I relay information to him, he is taking it in and understands how important this is. He “gets” it.
There is no ‘special cupboard’. This is so, so HUGE for us. See how and why we do this here.
Research. In the last two months, I have met with his Allergist, asked lists of questions, tracked down nurses and pushed for answers when they weren’t readily offered (still many are unanswered). I’ve reached out to people I trust with kids with severe food allergies, I’ve read articles, hunted for a better allergist that can do more than a one-size-fits all plan, and joined online communities of food allergy parents. I have quickly learned that having an Allergist is not enough. An Allergist is necessary and great, but an Allergist plus doing my own research and having a small support community has been the best for our family.
Acceptance. I’ve heard rude comments from people who don’t understand the severity of his food allergies and it makes me want to scream. But, I know that I have to accept that there will always be people who don’t care to understand. This is something I am working on.
People Are Awesome. A friend’s sister who has two kids with food allergies emailed me all kinds of resources, “hooked me up” with FB groups for parents of kids with food allergies & has continued to send me new information she finds. My neighbor whom I have met only twice, once at a garage sale & once at a neighborhood Bunco night, has a son with severe peanut allergies has answered my prayer of finding a new Allergist. My parents have decided to make their house 100% peanut free so that we have a second haven other than our own home where we can have our son and truly be able to relax and know he is in a safe environment. I’m talking, 100% peanut-free. They are amazing. The kindness of people who have offered to help navigate this new phase in our life has been so awesome.
My Son Can’t Have Your “Peanut-Free” Bars. Please Understand. I read labels before putting them in my cart, reread each one as I put them away at home, and then again each time I pull an item out to cook up or put on his plate. That means, when I make something made up a meal of say, 7 ‘ingredients’, I have read labels 21 times to make sure none of his food allergens are in any of the ingredients. So please, if you make dessert bars without his allergens and I pass on giving it to him, please understand. It’s not that I don’t trust you, it’s the unintentional misread label or cross contamination that scares me. And even if I don’t give it to him, I still appreciate what you did BEYOND MEASURE because I don’t have to be as worried that someone else will eat a piece containing peanuts and then touch him and cause him to go into anaphylactic shock. So even if my son is not eating your allergen-free bars, I am so, so grateful you made them. And I will try my best to tell you thank you. If I forget, it is because my brain is going a mile a minute trying to track my sons moves, what he touches while also keeping an eye on what other people are doing. Have I mentioned large get-togethers are exhausting? They are fun. They are important. They are also nerve-wracking.
Leaning on God. I have prayed for strength while we find our way and a new ‘normal’. I have asked God to help me remember that while it is scary, this IS very manageable and while it is a battle, there are other battles that are so much bigger and for that we are lucky. We are so blessed. We have a happy, healthy, awesome family of four!