I know, I know it’s almost a week later. Trust me when I say we have had a long week! We took the boys out for about an hour while there was still some light left, but they enjoy handing out candy as much as getting candy, so it makes it a little easier. At Brandon’s age my mom would have to drag me in kicking and screaming if I could only trick or treat for an hour!! Wendy and the boys picked up a clown costume for Cubby, Man was he ticked. Never could get the clown hat to stay on, but did get the ruffled collar thing on him.

Last Friday Jeremy received his first cane, not necessarily because he needs it, but to get him accustomed to using it and just as importantly to identify him as visually impaired for others. It was pretty interesting walking around with two children with canes, I can forgive the children who stare, but it is amazing how many adults stare. I know I need to have a thicker skin, but sometimes I just want to say “Take a picture it will last longer!”(You may not remember that phrase unless you grew up in the late 70s early 80s like me)
Not very mature huh?


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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