Yesterday Arden and I witnessed another Nick miracle. I took a picture. Over the weekend I had been playing Bananagrams with friends. It is a game where lettered tiles are used to spell words. Nick was struggling to pick up the tiles. We...... Read More
In the early 1980’s there was a dessert place in Seattle, that had the marketing slogan, “Eat Dessert First, Life Is Uncertain!” Arden and I adopted this as a family motto. Circumstances always remind us that life is uncertain...... Read More
Nick has been having a wonderful time in Ireland, until just after 10:00 pm Sunday night. Without warning, he had about 30 minutes of pretty intense seizures. It was particularly terrifying. Once the seizures had stopped, it took a little...... Read More
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...... Read More
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...... Read More
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...... Read More
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...... Read More
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...... Read More
Nick loves music and he loves to dance. On Friday we were at a surprise ceili celebrating my 60th birthday. My 87 year old relation, Moira “Saddler” Doherty played the piano while we all sang and danced. Just watching Nick brought...... Read More
Today was a rough one. Nick was sick. It might turn out that he just has a cold, but that is the problem, we never know. He kept sneezing. I think that if I was watching our day today on a TV show, I might even think it was funny. It could be...... Read More
We operate an income tax business and yesterday was tax filing day in the US. Our tradition is to take everyone in our family out to dinner and so we gathered at a very popular restaurant near our home. It was so crowded that we had trouble...... Read More
Our son Nick has epilepsy. He has an epilepsy syndrome called Lennox Gastaut Syndrome, or LGS. It is a type of epilepsy with multiple different types of seizures that begins in childhood. The seizures are hard to control and require life-long...... Read More
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