Day 599


The first day of the new schoolyear is in the books. The boys woke up happy, and despite very little sleep, I did too. Benjamin’s tummy hurt again, but I was ready with Kytril before he even asked. Michael noticed that Benji’s discomfort yesterday began when we started talking about school. He has such a sensitive stomach that nerves can kick off nausea super quickly. Kytril to the rescue. I think it gave him a little mental reassurance, too.

I walked Benjamin to his third grade classroom door, and he shook his new teacher’s hand with ease and confidence. He marched right to his desk and got to work without a look back. His sweet new teacher looked at me kindly and said, “We’ve got this,” and even though I knew they did, I fought tears in the stairwell on the way back to my car. She said she’d call me this evening to get up to speed on Benji’s treatment, and she did. She is just lovely.

Banyan was next on the dropoff list this morning. No walks to the classroom for him. “See ya, mom!” and he was on his way. I’m hoping for a transformative and empowering year for my seventh grader.

I went back to work today. I tried to throw myself deeply into it. I got a lot accomplished, but my mind would not be still. Over the last few days I’ve faced the worst fears I’ve ever had, over and over and over again. I have stopped trying to reject them. They outnumber me. Instead I am trying to sit with them, to acknowledge their presence and allow them to pass. Michael and I have talked a lot about this. He feels the same way. Once we have more information, once everyone begins the screening process, we will calm down. But right now I am in a constant state of nervousness. My body feels as if I have to deliver a huge speech any minute. My stomach is in knots and things are spinning a lot. I am ready to move past this stage of processing. I need to return to the mental place I was in when Dr. Oshrine called me with the news. This information would exist whether we knew it or not. I need to take action. It’s time to take care of my family.

I emailed Dr. Oshrine to see if he’d heard from the Toronto physician, and sent him the name of another one up at Memorial Sloan Kettering who might be a valuable partner. I called the gastroenterologist and made an appointment for Benjamin for next Monday. I verified first that the GI doc would be in the St. Pete clinic on the date of Benji’s next lumbar puncture. I figured there was no sense in meeting with him if he wasn’t going to be the one to do the scope, and I will do everything I can to get that scheduled at the same time. I also returned the call from Moffitt to schedule the initial appointments for Michael and me. I’m waiting for a call back. And we are still waiting for approval for Banyan’s screening.

I tried to make myself invisible while I waited among the many parents with their chattery excited voices at pickup. I was so happy to see the boys again. As we settled into a typical late August afternoon of homework, dinner preparation and playtime with friends in the street, my body and spirit relaxed. It was a relief to feel normal, to have Michael home, to share a meal and play “two truths and a lie” like we do almost every school night. There is a healing batch of bone broth in the crock pot waiting to be put to use tomorrow.

3 thoughts on “Day 599

  1. And yet you were here to do prep and cooking and hosting with your sister for my 70th this weekend. You are amazing and I love you. Thank you and Benji for helping prepare the food. And thanks to Michael and Banyan for helping set up the yard and for bringing coolers,etc. J. Love to you all!!!

  2. You both are the most amazing loving Parnets any child could have. Don’t ever under estimate yourself. Will be praying for good news with the gastrointestinal physician for the whole family.
    Love you all.

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