Bad night for Dad

I got mad at Jeremy tonight because he didn’t want to go to bed or rather stay in bed without one of us laying there with him. I picked him up and carried him up to his room and made him lay in the bed all the while he was crying. I felt terrible about it afterwards, and apologized, but still doesn’t make it better and I feel guilty. Especially because I think the real reason I kind of flipped out was what occured earlier. I was laying in the bed next to Brandon(our nightly ritual) when Jeremy came in to get a goodnight kiss, he walked up to the side of the bed but I could tell he couldn’t see Brandon nor I in the transition from the light of the hallway to the dark bedroom. He was looking straight ahead and we were down about 12-18 inches. I could see his pupils were big but he wasn’t really seeing us and he kissed Brandon good night and then left, not knowing I was there because I hadn’t said anything to him. I had to call him back in to get my kiss.

It breaks my heart. Simple as 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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