This week we received a follow-up call from Nicks neurologist. Nicks seizure med blood levels weren’t optimal so he increased one of the doses of one of the meds. It is a dose Nick has taken before when we would be traveling and he needed...... Read More
We live in a world that honors high achievement. I was raised in a family culture that expected excellence in school, in sports and in my career. There is nothing wrong with working hard to achieve goals. However, if this intense goal-oriented...... Read More
People do things because it makes sense to them. We may not understand their perspective because we haven’t had the same life experiences. If we honestly make an effort, we may discover and learn something new. I have a few friends who...... Read More
Just like most everyone I know, my calendar of scheduled appointments gets filled up. Not all of these appointments are work related, some are lunches or dinners with friends. Some of my appointments are self-care and pampering as well. My...... Read More
Yesterday as I was working on my draft rewrite of the book I am writing about being Nick’s mom, I noticed something incredible. Our lives are full of experiences that create opposing emotions. For example, Nick was almost four when Derek...... Read More
I was chatting this morning with a mom who’s 16-year-old daughter has the same syndrome as our Nick. She said that just when she thinks that she can’t do anymore, then somehow she keeps on going, just like the Energizer Bunny. I have...... Read More
Every once in a while we all need a break from our typical routine. When I was a young mom, a wise man told me that “A change was as good as a rest.” We all look forward to our scheduled vacation time. However, if we are...... Read More
We have all had those days. They start out great, amazing in fact. And then somewhere in the middle, a crisis rears its ugly head. Sometimes we are caught completely unawares and other times we know “the particular event” is...... 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
During our trip to Ireland last fall Nick had a seizure while Arden was bringing him down the stairs. Because someone was with him as always, he wasn’t injured, but we felt that it was a warning. We determined that we needed to make some...... Read More
This week has been more hectic than usual for us. Nick was sick, which is stressful, and we were trying to finish all the things on our lists before we left for Ireland. Throw in some birthday celebrations and friends visiting. It was a full...... Read More
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