Day 20

The lesson today is one I should know by now. There are no “patterns.” One day at a time.

Benjamin was super tired today. Two naps by 1pm. The irritability that accompanied his Monday hunger had returned. There were also points of just plain feeling down. But interspersed with these were tenderness, laughter, true consideration for others, and enjoyment of the simple things. Overall he’s doing extraordinarily well, body and soul.

I do think the effects of these steroids are cumulative. His cheeks and belly are so puffy now. While it’s admittedly a little bit adorable, it is uncomfortable for him, and it’s feeding the self-conscious seed that his diagnosis has planted. He didn’t want to get out of the car when we picked Banyan up from chess club. He even asked about going to a different school one day soon. These are the questions that make me stumble over my own heart.

So, today we talked about the long term treatment plan. I reminded him that this steroid is only with us for 8 more days, and after a couple of weeks we will have a whole new regimen of medicines, and the hunger and puffiness will disappear. We also talked about school. How deep down, he really does miss his friends, and that it’s okay to hold that feeling right alongside the feeling of not wanting to see them just yet. I have a meeting tomorrow to figure out an Individualized Education Plan for him and work out a schedule for his teacher to come to the house on a regular basis. I’m also looking into a way he could Skype into his classroom. He said it all sounded cool, as long as I could still be his homeschool teacher. You’ve got yourself a deal, kid.

We spent as much time as possible outside today, as the weather was spectacular. We had a morning picnic and did our schoolwork on a blanket in the front yard. In the afternoon, we went to a park, with picnic number two. We laid in the grass. These are the spaces in all of this chaos that are so beautiful. The quiet moments, looking up.