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: Parenting
A Tale of Two Agencies
August 7, 2013 at 9:41 pm
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 […]
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 […]
Iceland Pre-Op Adventure
February 24, 2013 at 4:13 pm
Ben is scheduled for spinal fusion surgery on April 4. We’ve known this was going to happen since last August, but willingly blocked it out of our minds until this year. Since January, however, we’ve had to face reality: we’ve had school and therapist meetings to prepare for Ben’s 6 weeks away from school, we’ve […]
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 […]
Birthday Boy…Drumroll please!
July 31, 2012 at 10:16 pm
What do JK Rowling, Harry Potter and Ben Elwy all have in common? They were all born on July 31! There are many similarities between Ben and Harry. For one, they both have scars (although Ben wishes he had a cool lightning-shaped one). They both like moving fast. And they both have parents who adore(d) […]
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 […]
