The most powerful superpower

Great news to report! The last three weeks of Aviv having *only” 67 nuts/day have been infinitely easier than the previous weeks and months, and we are so thrilled. He’s doing it with only minor/occasional push back; nothing like the knockdown, drag out fights of the preceding month. I believe that seeing that there is something to work toward – that is, that his body might go negative to more nuts, thereby further reducing his daily dose – was motivating, and he’s back with a different commitment and energy. Ari continues to move forward with his as well, rarely complaining, but not thrilled. Both kids used to really, really enjoy food, and while I don’t hear any more cries to be freed from the study, the enjoyment of food is gone for them as they find themselves always full (from dose) or needing to eat more of it. Ari told us the other night that he was sad because it was 5pm, all he had had to eat that day was dose, and he knew that when he finally finished his last remaining piece, he’d be too full to eat anything else. “I just wish it could be like it was before, where I could eat normal food.” Ouch.  (I mean, great that he thought he was eating normal food before, but ouch that he feels the loss now.)

So we moved into action, once again, to try to regain some normalcy for the boys. We’d talked of hiring a chef previously, but talked to a few who said they weren’t up for the challenge (or didn’t understand what we needed), and had decided to move forward with Orr’s amazing baking. He’s done an above-and-beyond job at hiding the nuts in 3 brownies/cookies per day, but the kids are missing real food… pastas, chicken, waffles… ahh, the waffles that they used to savor. Finally, this weekend we heard: “I think it’s doable.” Ahh, such sweet words! Those came from the mouth of a personal chef we met with, after asking him to do the near-impossible: make normal food that the boys will want to eat (real food; not chocolaty treats), that has their full dose subsumed (not visible), AND be able to tell us how many nuts per portion so that we can manage the numbers. He specializes in cooking for people with food allergies and he definitely understood the challenge, spent a lot of time with us to understand all of the parameters, and while he didn’t give us a 100% “Yes, I’ll do it!”, he seemed optimistic and intrigued by the challenge. He’s going to do more research and get back to us, and I’m keeping fingers crossed. He spoke of mac and cheese (with the cheese being made from cashews), and lasagna (with ricotta being made from nuts), and waffles (made from nut flour)… this could really help the boys feel like their lives aren’t as crazy as they really are, which would help everyone’s emotional state. When we shared the news with the boys, Ari lit up and said it would be “like we’re back to how it was, but eating nuts!” Stay tuned and keep your fingers crossed for Chef Tom to come through.

We had some sweet moments and more firsts, as well, over the past few weeks:

-At a Bat Mitzvah for a dear friend, the luncheon afterwards featured a dessert table. As if the food theme was ‘nutpalooza’, it seemed every dessert contained, or was covered in, nuts. In the past, we probably would have felt so uncomfortable (even though we would have brought our own food) based on the risk of contamination from all of the other kids touching the desserts and then touching the tables playground equipment, that we would likely have left. Instead, we felt comfortable staying and even let the kids choose anything they wanted to eat from the table; that definitely blew all of our minds. The yummy goodness that are cake pops also blew Ari's mind...

-Bringing home the Chinese chicken salad that I used to love, but hasn't been in our home for years, due to the slivered nuts. After his initial pause upon realizing that there were nuts inside it, Ari loved it. He pushed the nuts to the side of his plate and ate the rest of the salad, but at least he ate it.

-We went to one of our favorite neighborhood restaurants, where they know us and automatically let the chef know (when we walk in) that we’re there, so that he can begin cleaning utensils and pans to ensure that no cross contamination occurs. (Shout out and thank you to Harmony Restaurant in Mill Valley.They have always gone out of their way to make sure we felt safe letting the boys eat there.) As we sat down on Saturday, Ari perked up and said, “Hey! They don’t need to do anything special for us! We can eat anything!” While that may sound obvious to you, we are still internalizing this new world of ours, and hadn’t made the connection until he said it. We called over the head waiter and were so proud to share our good news with him, and he was so excited for us. He had already, of course, let the chef know we were there, and said he’d be happy to tell him he could take it easy. The food never tasted better there than it did that night.

-Beginning a new school year, and being so aware of how different things are from last September. No special protocols in the classroom, no wipe down of the school bus seats, the (virtual) confetti that was thrown when the teachers announced during orientation that there weren't nut-based restrictions on lunches, and the genuine happiness that we felt from other parents and teachers when we told them the boys had been desensitized... not happiness because they could send PB&J's, but happiness because they knew how stressful things used to be for us.

Finally, for a little insight into the 5 year old perspective on all of this… Aviv was explaining to Orr yesterday about Green Lantern’s superpowers. “His power comes from his ring,” Aviv explained, “and it’s very powerful. Like if he had allergies, then his ring would make it so that he doesn’t have allergies anymore, without even needing dose!” That really is the apex of superpowers for Aviv… not flying, or x-ray vision, but being able to make allergies go away without needing dose. We’re doing our best to be (or find) that superhero, guys; just hang in there!