Is it summer yet?

Brandon and Jeremy are getting antsy for summer…..They were medically exempted from having to take the End of Grade tests, so they have not had their normal routines for the last 10 school days and it shows.   Don’t want to get up in the morning, don’t want to go to bed at night, don’t want to cooperate with anything……Brandon has actually begun taking rest breaks or quiet time with his head down and eyes closed in the afternoons at school.  We are kinda worried about what summer will bring for Brandon, he has gotten completely fixated on Zelda game on the gamecube and spends alot of time(especially in the morning) in his Yu Gi Oh world battling who know what.  Jeremy desparately wants to go to Cub Scouts day camp, but we just aren’t comfortable letting him do that………


I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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