A Trail of (gluten-free) Bread Crumbs

 Sometimes I forget that this is terrifying.

We've walked this trail for 13 years, and sometimes it's hard to see how far we've come. 

But the road of raising a child with life-threatening food allergies isn't always linear, and it twists back and forth at times.

I want to write this, not to stir up some kind of pity, but to maybe leave some breadcrumbs for other parents who are facing a scary diagnosis, or to help encourage empathy for those watching them struggle.

Just like there are different stages of grief, there have been different stages of this. 

 Moses was exactly one years old when he received the official diagnosis, which stated he was allergic to a list of at least 12 things. A few of them showed an IgE that was off the charts. Peanuts, for example have an IgE <100, and that's because 100 is the highest they categorize it as. His IgE for peas are less than peanut, and peas had tried to kill him. I now know that any allergy can be a problem at any time, but the weight of that printout from the doctor's office changed our lives forever.

During those early years the fear never left. I would have nightmares of being in a room with him, with peanut shells EVERYWHERE, and wake up with my heart pounding. When we went to friends' houses I never relaxed...I followed my little crawler around, certain that he'd find a dropped goldfish, or worse yet, a bowl of dog food, and became curious. Babies put things in their mouth, and there's always that fear of it being "not" food, and them choking. But this was so much more than that. 

I also followed some allergy pages on Facebook. Whenever there was a food allergy related death, there was usually discussion for days. The comments sent shivers down my spine, as better allergy mamas cast stones...This would not happen to us because WE would never...Where was his epi-pen?...Why would they risk eating in a restaurant? It was clear, if anything happened, I would need to live with the guilt that I could have prevented it somehow.

At a young age, Moses understood the severity of the situation. I was no longer scared of him putting something he wasn't sure of into his mouth. He would ask everyone in the house of they'd taken a drink from a cup left out (in case of cross-contamination), and would always have grandparents, or friends' moms show me the label of any food they offered him. I could trust him not to experiment. 

The fear lessened, without ever disappearing. And maybe it shouldn't...because a healthy dose of fear keeps us from doing stupid things.

But then came the anger. I spent so much time feeling angry and defensive, and trying to protect Moses from the sources of that anger.

I would overhear someone complaining about the peanut free policy in the classroom, or the airplane, and I wouldn't turn on them, but I'd be seething inside.

Anger and irritation kept me from empathizing sometimes, as others compared their food preferences or mild sensitivities to what could kill Moses. Especially, as it caused our necessary lifestyle changes to look like people following the latest fads. I was always scared that restaurant chefs and teachers would take us less seriously.

Well-intended friends would point me to a "cure" they heard about or had even had success with, and sometimes I'd just smile and thank them but other times I would feel angry that they thought it was that simple for us. That they thought I just didn't "want" him to get well without understanding how dangerous that process could be in his case.

I felt angry when others posted "studies" linking an increase in food allergies to vaccines, or junk food, or pregnancy habits. Inside my angry processing, it felt like a declared reason this would never happen to their kids...because they made all the right choices, and I did not. I felt equally as angry during the pandemic, when people I thought cared would loudly voice that "they couldn't be expected to change their lives for the weak and sickly." I know this wasn't about me or Moses. But it felt like a slap in the face.

I did my best to hide these kinds of things from Moses and how mad they made me. He was a kid who saw the best in people, and I didn't want him to become callous, distrusting, and cynical as I had.

But somehow, I've started to see that the anger and terror were robbing me of health, and happiness. They still pop up, but I'm learning how to navigate this next phase.

This next phase, The Teenage Years, have two themes.

1) Learning how to continue to look out for Moses, while more and more giving him room to look out for himself. 

2) Trying to creatively keep this growing teen boy fed and filled when he can't have any PeanutButter, cheese pizza, and hates all gluten free bread options.

These are the new obstacles. How's it going??? We're practicing, which I suppose is a good goal in junior high in general, right? 

A year ago, Moses was in a play at school. No one knew much about his allergies or how to use an epi, and the grown-ups were much too busy to notice signs of anaphylaxis in this quiet (at the time) kid. So, I camped out in the gym with my homework every single practice. I went to the cast party, and brought him his gluten free, no-cheese pizza, and homemade cupcakes. 

This year...I talked to his drama teacher and said lots of prayers. I knew that he had good friends who knew what was up. And when the cast party came, I dropped him off, really for the first party of that sort without a parent or big brother present, and I trusted him to ask the right questions, and avoid anything that didn't have an individual package and a label. And he was so proud.

Did I send him alone to California for the choir trip? No. Am I chaperoning the youth group San Diego trip? Yes. But he's learning to place an order at In-and-Out and Red Robin, and he scans labels before handing them to me to double check, and he self-carries his Epi at school now. And someday soon he'll be a person who drives, and maybe gets a girlfriend, and eventually a place of his own, and I have to believe he'll be ready.

Keeping him full is a whole other story. I may even do a whole blog post on the ins and outs of that. Just know he absolutely CAN NOT do school lunches and he HATES sandwiches, and I don't blame him...the gluten free breads he can have are not good and obviously no PeanutButter, almond butter, sunflower butter, etc. doesn't help.  Rice and potatoes are our best friend. Most days he takes a Stanley thermos filled with rice and some kind of meat. It's expensive, but we've kind of fallen in love with the Kevin's microwave ready cilantro lime or Thai curry chicken. I also like to pre-freeze gluten free pasta with Italian sausage, and mini meat-loafs. Made Good or Sweet Loren's granola or breakfast bars are a lifesaver. 

Moses loves it when other people love something he can eat. The gluten free Oreos taste just like the regular and I think he loves it that he almost has to fight for a few when we take them to a party. 

Long story short...if you're new to this, or any scary diagnosis, know that just like grief, you'll find yourself in a bad place again every so often but you won't feel like you're feeling now all the time. These are the breadcrumbs I leave you.

If you have no point of reference, this is for you too. We don't know what we don't know. But when we know better, we do better. I don't share this for anyone to feel sorry for us...I'm tired of that. But I do want to live in a world where we share and hear each other's stories in an attempt to make life kinder.