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: Health Policy and Management
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 […]
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 […]
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 […]
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 […]
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 […]
The ABLE Act
May 1, 2012 at 11:06 pm
Tonight I was witness to the most interesting of sibling disputes. How do you define “volume” and “mass” and how are they different? [Don’t ask me!] Lucy and Ben got into a heated debate about this, and Ben ended up turning to his iPad for the answer. Both claim they are right. I had to […]
Caregiving, a TEDMED challenge
April 11, 2012 at 10:47 pm
If any of you teach, then you know how an inspiring teacher can be mesmerizing to an otherwise tired, overloaded group of students. I’m not often that rousing teacher, but this year, I became a fan of TED Talks to help create that bolt of motivation when it was lacking. A TED Talk by physician […]
Outing Depression
April 5, 2012 at 12:01 am
After Ben was diagnosed with Schwartz-Jampel syndrome, my world began falling apart. I don’t think it was just because of the diagnosis, I think part of it was the uncertainty of what he and all of us would be facing. Up until May 2003, I had become as expert as possible on Marfan, Ehlers-Danlos, and […]
