Days of awe, indeed

More good news to report! It’s actually been – relatively speaking – a good week. Both kids finished their dose by 6pm each day, which means they are finished by the time I return from work, enabling us to have a normal evening that isn't spent around the kitchen table arguing over the last few bites of dose. We actually get to hang out and enjoy each other, and it feels great! The boys have gotten into a groove where they have one piece of their dose in the morning before school, and then take two pieces in their lunch (without much else; a few bites of fruit, a cheese stick and maybe a quarter of a sandwich, but that’s it), and they are both finishing their dose by the time they come home. (Thanks, teachers, for encouraging them to eat their dose at school!) As part of my throw-all-previous-parenting-rules-out-the-window approach, I've taken a page from the corporate world’s playbook, and have incentivized my consumers. In kid speak, that means I've promised them that if they finish their dose by 6pm, they can eat anything they want afterwards and watch a few minutes of TV (previously reserved for very special occasions), and it seems to be working. While there are a few caveats (they need to have a vegetable as part of their ‘anything they want’, and must stop all eating by 6:45pm so that they’re not too full the next morning to start the whole cycle over again with their morning dose), they mostly have free range to choose, and what’s interesting is what they pick… chicken strips for Aviv (always; he insists the nanny text me on the way home to confirm that he’s finished his dose so that I stop at the store to buy him some) and sometimes a piece of dried fruit or a cracker, and real dinner for Ari (beef, salad, chicken, Chinese food, etc.). Neither of them want dessert, or at least not any baked goods. 3 big brownies or cookies a day can take the fun out of that for you.  

Not to fear the drudgery of daily cookies/brownies, however… Those days are (hopefully) soon to be behind us. Chef Tom said yes! He spent the past week doing an amazing job of researching nut recipes, running sample menus past us, and confirming details… apparently soaking nuts helps both the taste and malleability for cooking, but letting them ferment may  change the protein properties, so Dr. Nadeau drew the line there. In addition to the taste challenge, Tom also has to figure out how to make enough food for the week, in portions that match up to the daily dose requirements, with detail for us regarding which foods have which nuts (and how many), so that we can replace items if the kids don’t want to eat something on a given day. He’ll do a variety of items, with some sauces to give us the ability to change up the underlying food. For the first week, we’re looking at:

-Pecan waffles for both kids

-Cashew-peanut sauce for Aviv (to put on top of pasta or rice)

-Coconut curry walnut sauce for Ari (to put on top of pasta, rice, or meat)

-Hazelnut sweet potato cheese shmear for  Ari

-Hazelnut and walnut crackers for either

-Pecan-crusted chicken strips for either

If each kid eats the identified portion of each of the above, that should cover their daily dose. I am very thankful that Chef Tom has agreed to take on this puzzle, and Ari already told me how excited he is… “I LOVE sauces!” he exclaimed. Got to love that boy, but not to be outdone by Ari, Aviv announced that if Chef Tom can figure out how to get nuts into chicken strips, he would would like to give Tom all of the money that he has been collecting in our Tzedakah (charity) box. We’ll get our first food delivery Monday night, and will test drive Tom's plan on Tuesday. Fingers crossed.

But before open season on nut sauces and nut waffles commences, our family will be observing Rosh HaShana, the Jewish New Year. Rosh HaShana is the first of ten days (ending with Yom Kippur) referred to as the ‘days of awe’, in which we are supposed to take part in self-examination and repentance. It is a time of reflection of one’s actions over the past year, and commitment to how one wants to live their life in the coming year. We eat apples and honey to symbolize sweetness and welcome in a sweet new year. As I look back at this past year (rereading this blog from the beginning for the details that have since run together in my head), I am truly awestruck by how far we have come. At this time last year, we were scheduled for our formal screening and first double blind food challenge with the SAFAR team, but nothing had occurred; we hadn’t even been admitted to the trial yet. We were hopeful about the research that Dr. Nadeau was doing, but had very little information to go on, and couldn’t even really imagine what life would be like, either during the trial, or after. Our biggest fear was that the boys would have reactions each night when they ate their dose, a fear that only came true one night – the first night! – but not after. We could never have imagined, as we reflected last year at this time, what this year in fact held in store… safety and fear, piece of mind and tears, opportunities and limitations, strength and exhaustion, freedom, questions, perseverance, bravery, growth, learning, and so much more. 

As I reflect on this year, what I want to do most of all is hug A&A. I’m so, so proud of them for persevering and trusting us. What must it have felt like for them the first time they were eating their dose, knowing they were eating something we’d always told them was so dangerous? I still remember Aviv lying in the hospital bed six months ago, staring silently at his first peanut M&M, before raising his eyes to meet mine, whisper to me that he was scared, and ask if I was sure it’s safe to eat. How truly awesome, in the intended sense of the word, is it that they can now eat anything? That this study worked? How far we’ve come in one year... How much we have to be grateful and thankful for… As I look deep inside myself at this time of year and put together my list of repentances, I hope that we’ve lived our lives in ways that have made the world a better place this past year, because the world (and so many special people in it, including so many of you) has certainly made our lives better. 

While apples and honey symbolize sweetness, nuts - which used to represent fear in our world - have come to stand for strength, health and hope in my mind. (We've 'taken back the nut', as it were.) As I make my traditional kugel this year for Rosh HaShana dinner, maybe I'll add nuts to the sweet mix to help ensure that they and their new attributes are a welcome part of the coming year. Warmest wishes from our family to yours, that you have a sweet, healthy, happy, strong and hopeful year.