Six years ago we had our initial full allergy diagnosis.
On January 5, 2010, I wrote on my personal Facebook: “Anyone done any wheat, soy, milk, egg, AND nut free cooking/baking? Turns out [E] is allergic to all of the above and more. […]”
On January 5, 2016, new guidelines were announced regarding infants and food allergy. You can read Dr. Dave Stukus’ breakdown here, he is one of my go to sources for evidence based information about food allergy. I have met him and his wife in person and they’re just lovely, caring people aside from being super smart.
It is so weird to be reading about the new early introduction guidelines and have the memory of our initial diagnosis popping up in my Facebook “on this day” feature.
As usual, my fellow allergy moms on Twitter came to my rescue as all of this was swirling about.
Laurna (@myallergyboy) was expressing her own struggle as she read the early peanut introduction guidelines and thought of her child. Sarah (@sarahjchapman) helped us both to consider that this could help quite a few people but understands better than many what was going through our minds as she’s been on the food allergy parent road as a trailblazer with young adult children.
While Dr. Li‘s research makes me the most hopeful for the future of a food allergy cure, any research into the whys and how-to-prevents in the field will be the rising tide to lift all boats. I can know these things and intellectually accept them but regret is a strange specter.
At court this week as I began my appearance on the record, the Judge interjected – “is everything alright counsel?” I was puzzled and she continued, “you don’t seem like your usual chipper self.” I would never characterize myself as chipper but I do work hard to have a professional demeanor. My “work self,” much like my “online self” is curated to be positive because as cute as Eeyore is, most people wouldn’t want to read his twitter feed. Which isn’t to say it is a misrepresentation, but I do keep a journal of sorts where I get my thoughts out of my system and file them away to ponder another day. At any rate, I had been deep in thought when my case was called this week and it showed in my face.
Six years of managing food allergies and I have many regrets. I can’t shake them and I often journal about them.
On June 29, 2015, I wrote in my journal: “I’ve been thinking and reading a lot about regret lately and struggling to understand why when we’re young we don’t appreciate things. People told me to savor the good moments but I didn’t really understand that what they were saying wasn’t to just enjoy them – I was supposed to be more present (and I wasn’t). Like when you have a newborn and you’re obsessing over how long they sleep in a row, or just worrying in general. Worrying is my specialty – I even do it professionally. Then I think, “well, can’t do anything about what is past, need to change my life in the here and now,” but it is every bit as scary as it has always been. Keeping as busy as possible helps me not ponder life, the universe, and everything even though it is a part of the problem, it is part of what got me into this mess. There’s so much to be grateful for, and I am very grateful, which is what I ultimately circle back to… but gratitude is not the same as being present, right?“
I certainly do regret being so caught up in food allergies when E was a baby, and then when R was born, that I didn’t pause to appreciate their small fingers and toes, their sleepy sighs, or just being at home with them.
I regret not getting a diagnosis sooner, like when E first reacted to her very first taste of oatmeal. I regret talking myself out of something big and scary like allergies and trying to treat her eczema from the outside in.
As I sit here six years after learning of all the things she couldn’t have, the things that could hurt her, my advice to my past self wouldn’t be about all the medical things I’ve learned about allergies or all the legal things I’ve learned about label reading and disability rights legalities.
I regret not moderating my reactions as I learned to help our daughter be safe. She is my little sunshine, chipper and cheerful but my actions have made for a rain cloud that follows her wherever she goes. In my efforts to prepare her to be safe, I made her fearful. I chide her for not remembering to take her “epi” with her when she heads out the door. I chide her for not taking it off and putting it away when she comes home. I nag and nag and nag about label reading and not taking risks. And I act surprised when she notices that I don’t take a sip from her water bottle, realizing instantly that I’ve eaten something during the day that makes me hesitate and feeling left out for me doing so.
I had falafel at lunch yesterday. Yes, I make her homemade versions without sesame but I have lunch meetings at restaurants she can’t go to. I sneak away for Thai food or Middle Eastern food and tell myself these meetings have networking purposes or are a chance to talk with my husband kid free but when she reacts with sadness I know it is my doing in the first place.
So, new to diagnosis allergy caregiver – if you stumble along and see where I’m at? Try to have an outlet for your worst fears that holds you back from sharing your worries with your child when you tense at the sight of peanut smeared hands on the monkey bars or the note home about the upcoming Willy Wonka themed class party.
We’ve been listening to the Harry Potter books in the car and just finished book 4. “Constant vigilance!” Mad Eye Moody says. I felt that was always my mantra for food allergies but I was wrong. We don’t tell our kids of the dangers of car accidents each time we buckle them in, but this allergy mom in trying to make “safe” treats and calling them as much unconsciously or otherwise created a concern about the “unsafe” ones. The danger lurking in every bite.
It wasn’t fair to her, it isn’t fair to either of us. She’s the one with the developing mind an impressionable heart. I have learned and adapted and, dare I say it, calmed, over six years and it is my job in the next six years and beyond to make sure I share the reassurance and calm with her even more than I have shared my anxiety for her future.