NORD, an amazing charity to support!

NORD, an amazing charity to support!

NORD, or the National Organization for Rare Disorders truly is a life-saving organization.  NORD, along with its more than 230 patient organization members, is committed to the identification, treatment, and cure of rare disorders through...

You can’t always count the cost.

You can’t always count the cost.

In Enniscrone, Co. Sligo, Ireland, there is a large 767 airplane in a field.  It is part of the Quirky Glamping Village.  As you know, Nick loves planes and we were told we had to see it.  He thought it was very funny. Over the weekend, we heard...

On the road again!

On the road again!

Nick woke up Monday morning quite excited. He didn’t even say good morning in response to me entering his bedroom. He started singing, “On the road again!” I cracked up. He knew that we were traveling to Ireland and understood...

Top Gun Mask.

Top Gun Mask.

In the fall of 2010, Nick’s seizures were out of control.  Our epileptologist (a neurologist who specializes in epilepsy) was looking for all sorts of solutions including the usual medicine changes.  Some of the factors used to manage...

Adjusting to the new normal.

Adjusting to the new normal.

Ancient Greek philosophers taught us “The only thing that is constant is change.”  It seems that just as soon as I get used to the current changes in our lives, we are facing a new normal.  Nick has fallen a couple of times this past...

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