I have a confession to make……

I burnt myself out. I was, and to some degree still am, stretched way beyond my means. I was so stressed out I didn’t even realize I was stressed out. The perfect storm hit with the fundraiser, joining a new church, end of year festivities for the boys, having a home health care aide start for Brandon, and the every day things that happen in the lives of a family of four. Then you throw in the things like hailstorm damage and dealing with car and roof repairs, it’s no wonder I feel like I have been hit by a Mack truck. I took this last weekend and did absolutely as little as possible and it really helped. Don’t get me wrong, I still have a laundry list of to do items that is a half mile long, but I feel somewhat in control.

Jeremy lost his first tooth the other day, finally!!!! At 7 yrs old he was disappointed because many of his friends have lost several teeth by now. Jeremy also has been asking for a big bed(twin vs full) like Brandon’s so Wendy went out and got one today. We also mourned the passing of China the Hamster last week. There are pictures from the service that was held on our photo page. Brandon’s behavior has been a little more erratic recently, he had an outburst yesterday because I told him he needed to turn his Nintendo DS off. He also has been acting very silly, giggling, laughing, almost uncontrollably at times. Even one of his new aides noticed that his short term memory being hit or miss. I can see how a year round school schedule could benefit a Batten child, the lack of structure has really got him all messed up.

Our latest fundraising count puts us at approximately $13,000 for the 5k!!!!!!
Thank you again for your support in body, mind and spirit. I still am amazed at the goodness of total strangers who pray, offer words of encouragement and acts of kindness.

I am looking forward to the trip to Denver in two weeks(16th-20th) for the BDSRA annual conference. I can’t wait to see the people that we met last year and get to know new families as well. The conference itself is also a place to soak up as much information as you can, it’s just as important to hang around outside the conference rooms gathering information and advice from parents as it is to be in the learning sessions themselves.



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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