Another day of ups and downs

Amazing music in church today, I love our church’s music!!!! The Praise Choir sang a song called “We Will Remember”  Then on the way home we overhear Jeremy ask Brandon “Brandon, when we get to be adults do you think our Batten Disease will be gone?”  Brandon “Yeah, I think so”  Jeremy: “Yeah, me too.” 

To top it off we visited my friend Linda’s stable today where they had a horse show.  Brandon and Jeremy love to go and ride Mac so Linda invited us out to experience what it was like with all the horses and riders and to visit.  Brandon and Jeremy got to brush down Mac before they saddled him up.  Just as Linda was cleaning up the stall getting ready to take him out he decides to poop on her clean floor.  The boys got a big kick out of that.  Tonight the boys were very wound up, and weren’t listening, and I yelled at them to stop.  As much as I try to tell myself it is only human, I still feel terribly guilty when I lose my cool like that.   I wish I had a dollar for each time I cried today, I would be well on my way to a decent lunch at the cafeteria tomorrow!


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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