On Ben’s birthday last week, a birthday he shares with Harry Potter (July 31), he should have received his letter via owl inviting him to join Hogwarts School of Witchcraft and Wizardry in the fall. Instead, he received a barrage of snail mail from the Office of Medicaid (aka MassHealth) from the Executive Office of […]
Category: Advocacy
Ben’s Road Traveled
April 22, 2013 at 10:39 am
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. –Robert Frost It’s been 18 days since Ben’s surgery at Boston Children’s Hospital, which involved attaching titanium rods to his T1 and T12 vertebrae to create tension to straighten his thoracic spine. By […]
Red Carpet Reception
March 1, 2013 at 11:19 pm
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 […]
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 […]
A New Year’s Gift
January 10, 2013 at 2:02 am
Massachusetts is a special state (nay, Commonwealth!), which has more comprehensive programs for helping children with medical complications than many other states. For that reason, I always tell Sherin we are never moving. A job in NY or London? Fine–but that’s a long commute for you! Still, no state or commonwealth is perfect, and one […]
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 […]
Summer Computing Fun!
July 23, 2012 at 9:21 am
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 […]
A Tentative HOORAY!
June 28, 2012 at 10:25 am
I’m spending an intellectually exhilarating–yet a little exhausting!–week with 19 other Implementation Research Institute Fellows in my first year out of two years of training in the state of the art in implementation science. I’m trying to figure out which strategies will be most effective in making sure that evidence-based practices for treating Veteran patients […]
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 […]
The Road Others Traveled
May 22, 2012 at 10:42 pm
Tonight, days after Katie Beckett died at the age of 34, Ben performed with classmates from seven other elementary schools in the All Town Band. Although Ben had initially been nervous about playing both in his school and All Town band, and I knew that my involvement at all rehearsals was going to be necessary […]
