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October 3, 2019 7:43 pm

Alexander returned home yesterday.

We went to the grocery store afterwards and it didn’t go very well. The realization hit him hard when looking at food labels. Tears were swept quickly away. We were both frustrated with the process and felt helpless. We decided on small things familiar to the hospital offerings only because we were already too overwhelmed with the discharge process and journeying into the unknown. We walk down an empty aisle heading to the check out lane when he says something that breaks me inside. “Maybe we should have stayed in the hospital because they were taking good care of me. Now we’re only trying to take care of me.”

I stop. I can’t speak. My eyes well up with tears. He doesn’t understand how much that statement just tore me apart. It’s not his fault. Maybe he’s right? Am I selfish for wanting him home?


Today we had a meeting at his school to discuss accommodations, schedules and sign paperwork. There are too many follow up appointments between now and Tuesday to make a sensible and “seamless” transition back to school. He will go back next Wednesday. Ha. Seamless. Yea right.

He hangs out with me at work. We prepared his lunch bag, snacks, and drinks before leaving home so the only thing to do was write everything in his little notebook. We arrive home after work and realize he might have left the lunch bag along with his notebook at the office.

Don’t. Panic. Don’t. Raise. Your. Voice. BREATHE. I resist the urge to tell him he needs to be more responsible and doesn’t he know how serious and careful we need to be?

I grab a pencil and sheet of notebook paper and start with the chart. Then pull all the items one by one from the cabinets and the fridge and start transferring the numbers on the labels to the page. Adding things up in my head I start to get scared. Did we go over? Can he have that 3rd snack? Damn light mayo. Stupid white bread. I slow down. Check all the numbers and add them up slowly. He has just enough left to have 5 low sodium ritz crackers.

“Can I have cream cheese?”

“Well let’s see.”

“1 tbsp of cream cheese is 31grams. There is 125 grams of sodium in 31 grams of cream cheese. 31mg of cream cheese over 125mg of sodium equals x over 62.5mg of soidium. X= 15.5 grams of cream cheese.

“”Mom you just had to divide 31 by 2.”

“Okay smartass. You can have cream cheese with your crackers. “


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