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September 24, 2019

Day 15: We met Mickey Mouse and the team of ESPN “Voluntears” at the hospital’s Family Resource Center today. Alexander made me beg for pictures.

“I’m too old for childish things now, mom”.

My heart aches. Time is going by too quickly.

We played video games and made new friends who are on their own health journeys.

We returned to our room for meals and snacks and met with the Social Worker and part of the Nephrology team. It’s time for Alexander to learn and demonstrate understanding of all the new changes. Limits. Maximums. Choices. Schedules. Medication. Dialysis. All of his new responsibilities that will continue when we eventually get to go home. Everything he has to remember and do for himself at school.

“Why? I don’t want to. It’s not fair.” So much to ask of my little big guy. He’s still a child. My growing child.

I could feel his frustration. He cried silent, single digit tears and refused my comfort. He asked for space. That’s okay. We can come talk some more tomorrow.

We ended the day with a visit from one of my sorority sisters. She brought Road Trip Connect 4. It was a close game. Alex won 5-4. He says she got schooled.


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