Holiday weekend

We had a difficult late afternoon today. Everything was going well, Wendy and I got some yardwork done(it’s about time) while the boys played. I got very annoyed with the boys when they were needy while we were trying to get things done.(I need help, I can’t do this, etc) This would come back to bite me. Wendy took the boys to the neighborhood pool around two and I met them around three pm. Brandon swam alot but Jeremy didn’t swim until later. Just before we were ready to leave I was watching Jeremy in the three(translation-shallow end) and Brandon was swimming with an innertube in the 12 foot. Next thing I know Wendy is walking towards us with Brandon, who looks upset(they both did). From what we gather, he was swimming and either had a siezure or something, but he said his vision was gone, black. He climbed into the water with Jeremy in the shallow end and then started putting his head underwater holding his breath, floating to the top pretending to be dead. It scared Wendy at this point, I would start to get scared a little later. He would not get out of the pool and we felt an “episode” coming on. I could see Wendy was getting upset so I told her to take Jeremy home and I would deal with Brandon. I think he was scared, but he put on a pretty good show trying not to act it. I climbed into the pool and tried to get him to leave, but had little success. I was almost ready to cause a big scene and pull him out of the water physically when I got saved by the bell, rather the lifeguard’s whistle announcing adult swim. He has had a couple of these epidsodes before but this was by far the worse one to date.

It seems that whenever I try to think that I have a somewhat ordinary family that I get put right back in my place. How dare I get annoyed with my boys, when they have more courage on a daily basis than I ever will. Instead of really enjoying everyday that I have with them I get caught up in, GOTTA GET IT DONE, GOTTA GO, ETC………I hope that everyone that reads this will slap me on the back of the head and say “DUMMY, enjoy it while you have it” so that it gets through this thick skull.


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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One comment on “Holiday weekend
  1. L. says:

    You are correct. However, I suspect that you do enjoy every day with your boys and you do appreciate all that you have with them. You are only human, my friend. Don’t beat yourself up for being annoyed with your boys and wanting to do yardwork. That’s normal! Your whole life may not be “normal”, but it’s OK for some of it to be:)Laurel

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