Let it Be

Sometimes with Batten Disease you just got to “Let it be, let it be, let it be, let it be”  For a couple of months now we have tried to figure out why Brandon has decided to spend a little time almost every school day taking a nap.  Thought it might be seizures, thought it might be medications making him sleepy and I think we finally just reached the conclusion that this is just the new “norm” for him and we need to stop worrying so much.  Let it be.

Jeremy is also in a different place than I last wrote about the boys.  He has had a more difficult time adjusting to middle school transitions then Brandon ever did.  We fretted and fussed(and still do) about setting him up for success.  He has times where he just shuts down completely about things not working out the way he wants them to be.  Let it be.

But then little things that happen make me realize that God is in control, a smile from a stranger, a hug from a friend, an encouraging word from a client, a prayer from someone you least expect.  Let it be.


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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