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 […]
Tagged: Community
You’ve Been My Shelter
June 21, 2013 at 10:30 pm
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 […]
@BraveBenE
March 23, 2013 at 5:35 pm
Ben hasn’t had surgery since November 2011—almost 1.5 years ago. 2012 was a surgery free year! But on April 4, 2013, that will all change, when Ben undergoes insertion of growing rods along his entire spine to help address his severe scoliosis resulting from Schwartz-Jampel syndrome. Over the last 10 years, Ben has been cared […]
Goodbye Gabriel
February 10, 2013 at 9:19 pm
He loved the show Yo Gabba Gabba and his older brother Andre. He smiled and laughed all the time, even through many episodes of pain. He was his mother’s joy and love, and she fought so, so hard to get him all the care he needed. And he said his goodbye to his family and […]
Wheely dogs and international friends
October 24, 2012 at 9:57 pm
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 […]
Always Ask!
June 23, 2012 at 11:14 pm
Charlotte’s first foray into the land of Wellesley Little League has recently ended, and I think Ben is glad. We went to a lot of Sunday afternoon t-ball games this Spring, and we experienced excitement like a wasp’s nest in a tree above our head that made us run for our lives. Ben put the […]
Flying High!
June 10, 2012 at 10:41 pm
When Ben was 5, his greatest wish was to fly. He didn’t care how–either planes or rockets would do. He was granted a room in which he could dream of flying, from the incredibly generous Room to Dream Foundation, who selected Ben as the third child (at that time) to benefit from a newly created […]
Random Acts of Kindness
May 28, 2012 at 10:52 pm
Our town’s Memorial Day celebrations took place last weekend, so this weekend, Sherin and I basked in limited scheduled activities and actually finished some projects around the house. We needed to run some errands with Ben and Charlotte in tow, and afterwards, we treated them to their favorite burrito place, Boloco. Boston Local Company, aka […]
