Firsts and more firsts!

So if 11 days ago I wrote that our minds had stretched themselves to the point of hurting since the boys were cleared to eat foods that might be cross-contaminated, I can now report that our tummies have followed suit. We have spent the past two weeks eating ourselves silly around Marin, exploring restaurants, store aisles and foods, and engaging in behaviors that seem remarkably unexciting, unless, of course, they have been off limits to you for years.

The boys had many firsts (and many items were checked off on the Wishing Wall!) over the past 2 weeks: first trip to Jamba Juice, first Zbar, pizza places, ice cream parlors, bakeries and more bakeries, petit fours, éclairs, samples in Costco, fresh breads, pastries, pesto, a sandwich from a food vendor… I wasn’t kidding when I said our tummies hurt! In addition to enjoying watching the boys eat and experience new foods, it was the little things that we were finally able to do. Orr has been out of town for the past week, and I decided to take the boys all over this weekend… for smoothies, to an Earth Day festival, to a store to get popsicles, to parks, exploring at Costco, and to a pizza place with friends. Normally, even with Orr, we wouldn’t have included those food-related stops, as the locations didn’t have safe food for the boys. We would have gone to the festival and parks, but I would have been nervous the whole time about what the boys were touching that could have nut oil residue on top. We certainly couldn’t have eaten any of the food offered at the festival – that was out of the question – but even the non-food activities there would have been anxiety-producing, enough so that I probably wouldn’t have done it solo... too many things to watch out for/anticipate. Fast forward, however, to our new world where cross-contamination is not a risk anymore. I took them to all of those places, let them eat what they wanted, even ordered a sandwich from a food vendor at the festival (Finally! Freedom from the cooler bag!) and let the boys run free to touch whatever they wanted in the booths without chasing them down with wipes. It was amazing. I was truly overwhelmed at the ease of it all and the enjoyment of the day and the moments in ways I hadn’t felt before.

We went to Costco and spent several hours walking each aisle, talking about the foods and brands that they’ve never had, but can now. They wanted to learn about different types of nuts and brands, asked questions about what things taste like, and then savored the samples that were previously coveted but forbidden. We went to bakeries and food stores and did the same thing – looking at and talking a lot about food (and then eating new things!). This is a process to adapt to, not just physically, but mentally. When they picked out their MUCH desired Zbars (I guess because they see their friends with them? I’m not sure why it was such a hot item, but it was high on the Wishing Wall…), they both held them and looked at them for a moment. 
Aviv then asked if he could eat it, ripped open the package, and began devouring it. Ari opened his and stared at it for a minute before asking me, quietly, if I was sure it was safe. I told him it was, but that we could read the ingredients together just to make sure. He listened to the ingredients intently, heard me confirm that even though it was made on equipment with nuts, because he has been so brave and followed all of the rules of the study so well, his body is now strong enough to handle it, and it’s now safe for him. I keep reinforcing that it’s their bravery and diligence that is enabling their bodies to grow strong. I know that the nightly doses aren’t fun for them. Despite the fact that they are taking their nightly nuts in chocolate pudding, apple sauce and/or a big chock-full-o-nuts cupcake, the sheer volume makes it not exactly fun or tasty, and I want for them to have a clear connection in their minds of the benefit that they get from this effort, as they have a lifetime ahead of them of daily doses in order to maintain their bodies’ immunity.

I also had a few moments of my own when I was struck by how our life had changed over the past 2 weeks. One was the arrival of our first nuts.com order… there was something just so unbelievable about it that we all looked at the box and laughed for a while before opening it. Then during a meeting at work, I had a bite of a peanut butter cookie and then instinctively assumed my usual position after such a contaminating event of making sure that my hands don’t touch my pen or phone until I have a chance to wash them off… until I realized that it was ok… this level of cross-contamination was fine… it won’t hurt my kids. My head spun a bit as I had to almost force myself to pick up my pen without waiting to wash my hands. Just as the kids are experiencing new things and re-learning ways of living, we need to re-learn habits as well.

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Tomorrow we head back to Stanford for the next updose – this one to 5800mg! We’re definitely past the point of being able to hide the nuts into a cupcake, so it will be interesting to see the actual number of nuts tomorrow, and more interesting to see how we’re going to get them to eat that many at one sitting each night. As I prepare our bag (with games, medicines and my huge medical file of notes) for tomorrow, I am acutely aware of the huge cloud that has been removed from our sky. As tiring as it was to keep up with 2 active boys as a solo parent for the past week, going out in public with them wasn’t stressful. That, on its own, is a huge change. We thought that the big life change would happen for us when the study ends and the boys graduate from it, but in some ways, crossing the cross-contamination barrier is a bigger milestone. The boys are sharing their good news with everyone who will listen; they are so excited about these new experiences and it feels like such a privilege to watch them revel in it. For us, participating in this study is about what happened this past weekend… it’s about erasing the invisible layer of risk and anxiety that permeates everything we do, to allow us to just live and enjoy our lives. To enjoying every minute!