“What Did You Do In School Today?”

One year ago, Shawn missed the first day of school (I think.) Three months ago Shawn missed the last day of school. In between Shawn missed over a hundred days of school and countless partial days. Then we spent the summer doing “Camp CHOP” with inpatient chemo starting every four weeks for 15 days at a time. The idea of what we’re doing now was not even on our radar a year ago today. I looked at emails and texts that Bill and I sent to each other on those days and they included words like “I don’t know if he is sick again or is just saying that to get out of brushing his teeth” and “Don’t brush your teeth again, whatever, I don’t care, just eat your fuckin’ breakfast or you will be starving in an hour” and “It will be very difficult for me to get out of work today. We’re slammed already. Hopefully he’s ok until [his dad] gets off work. Hopefully he’s ok period.” We had no idea what was actually going on. Reading those emails was hard.

Parenting is hard.

I eagerly read Facebook today and liked every single First Day of School picture I saw. I honestly liked them. I loved them. All of them. I posted my own. Those pictures are the best. Parents love those pictures. Our kids tolerate them. They are the good views. The hope views. The We’re Moving Forward Each Year views.

I work in Higher Education. I never have off for the kids First Day Of School. I usually go in to work early that day. When I was my kids’ ages and younger, my mother made homemade cookies every First Day Of School. I have never been able to do that until this year. Since I’m still on leave, I could be home baking cookies while they were at school. I baked early so that I’d be able to go get Shawn when the school called me to come get him. No one expected him to make it past lunch. He usually needs a nap after a trip to the grocery store.

They didn’t call.

Shortly after noon, I sent an email to his teacher, principal, guidance counselor, and CHOP hospital teacher. I wanted to get things set up for next week when we go back for two weeks his last round of chemo. But I also wanted to see how things were going. His guidance counselor was the first to write back. She said that she checked on him at lunch and he was happily eating his little pizzas and wanted to go out for recess with his class. His teacher wrote later. He lasted the entire day.

Shawn is not supposed to be doing this well at this point in treatment. He’s in the final rounds of one of the most intense chemotherapy regimens there is. He continues to surprise us daily. We are lucky.

Last night we talked about going back to school. He was very excited. He told me, “this year I’m not going to be as shy because everyone in the school knows who I am because, you know, the cancer and stuff.”

We had tacos for dinner.

Shawn’s been asking for tacos for weeks so I prepped them after baking the cookies. Maybe he’d actually eat them. He’s losing weight and needs to eat. At dinner, I asked him about his day at school. He saw Happy, the Monkey that sits in his chair when he’s not in school. His teacher read the book to the class. He said goodnight to Happy before leaving. He told me that at recess he saw “the grave that doesn’t have a body” of the kid who died at his school four years ago and some other kids were asking him questions. I tried to find out more about this. I think it’s a bench that is a memorial for Nick, the boy from his school who had cancer and died in 2012, but Shawn didn’t have much to say about it. Nick’s mother visited us at CHOP a couple weeks ago. Shawn has been thinking.

At the bus stop this morning, a neighborhood mom told me about a family friend who’s five year old son was diagnosed with brain cancer a month ago. From her description, I suspect it’s the same type of cancer and same treatment protocol that Shawn has. I spent all day thinking about this, while baking cookies and prepping tacos. How do I help them when I don’t even know them? Would this discussion have happened a year ago?

What did you do in school today?

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