Summer is here

Today is the longest day of the year, sunrise at 6:09am and sunset at 8:41pm here in Charlotte and the temperature was 91 degrees with a heat index or “real feel” of 99 degrees.   Summer is here.  No school except for dad, beginning July 1 I will be taking online courses working towards a Bachelor’s Degree in Business Management.  Scared and nervous, it’s been over 20 years since I have been a full time student, but I think about Brandon and Jeremy and what they go through every day and what I am feeling pales in comparison.  Brandon has had a head cold since the last day of school and was really funny at the doctor’s office the other day.  He told Dr Lakin that he needed some medicine because this cold was “cutting into his pool time.”  I have only been to the pool with them once or twice so far this year but I really noticed that he has slowed down and struggles getting in and out of the water.  Makes me sad.

On a funner note here is a picture from Jeremy’s graduation from 5th grade.  He is so very excited to be going to the middle school next year that he talks about it almost every day.  We will really miss our WR Odell Elementary family, it has been a  great 6 years with them!!!!!


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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