I took Rebecca to story time this morning as I usually do on Thursdays.  We walked in and sat on the floor with the rest of the moms/grandmothers and their toddlers.  A few minutes into story time Rebecca was curious and got up to go look at something at the back of the room.  A […]

This past weekend I spent a good portion of the day at a visions seminar hosted by the Foundation Fighting Blindness.  It was not until I received a text from Beth that I realized that exactly one year prior was when we found out that Rebecca would eventually go blind.  Before that day I would not […]

Rebecca is doing amazing.  She can sign over 40 words now, and she can say “Mama”, “Dada”, “no”, “hi”, “bye-bye” (which comes out more like “die-die”), “Papa”, and she is very close to saying “Grandma”.  Rebecca is walking all of the time now, and considering her lack of vestibular function, she is doing a great […]

Beth and I have been reading a book titled, “No Barriers” authored by Erik Weihenmayer.  Erik is an adventurer who is telling his story about kayaking the Grand Canyon and also discusses his adventures of hiking Mt. Everest.  He is also vice president of the board of the not for profit, No barriers USA, which began […]

  This Thursday we head to the 9th Annual USH connections conference in Chicago.  It will be the largest Usher Syndrome related event we have been to.  Along with 200+ other people, both families and individuals affected in some way by Usher Syndrome.   We will be travelling with mixed emotions, on one hand we […]

My experience as a parent of a disabled child.

Rebecca is doing her part to help find a cure.  The Foundation Fighting Blindness reached out to us to ask if they could use her story and her pictures in their latest campaign to raise funds to help find a cure.  We were of course happy to help and love the way the email campaign […]