Lessons to be learned

As I sit here late on a Sunday night(for me) and think about the last week and get ready for a new week I am drawn to a conversation I had with a friend of mine that I hadn’t spoken to in quite a while the other day. We were getting caught up on everything that is going on in our lives and he mentioned his philosophy on raising their two adopted children. It really hit home with me as a parent and particularly a Batten Disease parent. To paraphrase this friend of mine, he and his wife have decided that they are going to cram as much time and activity in with their kids as time will allow. The almost verbatim quote is “at the end of the day we collapse rather than fall asleep and we wouldn’t have it any other way.”
I wish I had discovered and lived by this motto BEFORE a Batten Disease diagnosis, and I hope that by sharing it here that I can change the way just one or two families look at life. If so than it will be well worth telling!

It is such a shame that I learned this lesson the way I did, but I am grateful to God for being present in my life and changing me into the person that I am today. I hope that I can continue to become a better person and be able to influence others in the future.


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.

Posted in Batten Disease, living life to the fullest, parenting

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