Tagged: Friendship

Someone Like You

Jealous isn’t the right word; neither is envy–because no one should feel jealous or envious of people affected by rare genetic diseases. But I’ve always felt a longing for the kind of community that some of my friends in this rare genetic disease world have. Even people with rare diseases can find others who have […]

You’ve Been My Shelter

Life has become so normal so fast. A week ago, Dr. Emans said that the outcome from Ben’s surgery was “phenomenal”. Ben no longer needs me, or anyone else, on a minute-by-minute or even hourly basis. So, I’m back to traveling, for work and sometimes for fun. But let me tell you about the first […]

Red Carpet Reception

He wore stripes, just like many Dr. Seuss characters, but was missing a great big hat. But that didn’t stop a standing ovation from the Sprague School community, as Ben wheeled his walker down the red carpet Friday morning to accept the “Hats off to Reading” award at Sprague’s 6th annual A-CAT-emy Awards–the reading and […]

Wheely dogs and international friends

Sunday evening I was driving down a residential road with Charlotte and Ben, and slowed down when I saw a couple walking their dog. It was dark, but I caught a glimpse of the dog and saw that the dog had hind wheels instead of hind legs. I told C&B this and they both immediately […]

Summer Computing Fun!

Finally, by the middle-to-end of July, I feel like we’ve got the summer rhythm going. Boy, it took a while! For me, summer is one of those things that I know will hit, but like the first snowstorm, I am always surprised when it does. I wish Sherin and I had the time to take […]


Are any of you old enough to remember David Bowie’s song Changes? It was the theme of one high school homecoming dance…I won’t say which year! There are lots of changes going on. It’s getting towards the end of the school year, but it’s not just the end of any school year. Ben is graduating […]