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The whole is greater than the sum of the parts

“Have you considered getting a hospital bed for after the operation?” asked the occupational therapist. “You should have a suction machine. I’ll go get the papers to order it,” said the respiralogist 20 minutes later. We were at an annual follow-up visit for Deane, led by a pediatrician specializing in neuromusclular disorders. They use a team approach … Continue reading

How valuable is your time?

“You should’ve gotten off at the last stop,” he said from where he was repairing the bottom of the escalator. “There’s an elevator there.” I didn’t respond. It was the end of a long day and I just wanted to get home. “You shouldn’t put those on an escalator. It’s dangerous,” he continued, gesturing at … Continue reading

I don’t care how you say it

My first encounter with disability was in elementary school. My school was in the same building as  the Metro School for the Deaf. For the most part, the schools – as far as I knew – functioned independently. The “deaf kids,” as we called them, played mainly in the south end of the school yard, … Continue reading

Every breakthrough helps

I woke up yesterday morning to a story on the radio about a man in a vegetative state – a term that makes me uneasy – who had been able to communicate with his doctors through brain scans. The man had been left “severely brain damaged” – more uneasiness – after a car crash. He … Continue reading

On siblings

Tommy and Melanie sat up front going through a well-practiced performance of questions and answers. Tommy, now nine, answers almost of the questions. He is used to answering for Melanie – he’s been doing it his whole life. It was questions about Melanie that prompted Tommy and his mother, Nathalie Wendling, to write a book. … Continue reading

An ad I like

I don’t watch much TV that isn’t kids programming. So it’s unusual for me to want to write about a TV ad, but here goes. Last night while watching I don’t know what, an ad from the insurance company MassMutual came on. Apparently it has been around a while, but this was the first time … Continue reading

The confusing world of charting weight gain

Deane’s weight is so far below the curve on a standard growth chart that it is unmeasurable. No wonder the dietitian is giving me ultimatums. It is very distressing when the doctor points to a spot inches below the sweeping curve of normal weight for 14 year olds. But what I’ve found out on our … Continue reading

The importance of Oct. 31

The day after Halloween last year, my daughter told me what she was going to be for this Halloween. Then, a couple of times over the summer, she told me that she had been thinking about Halloween and had changed her mind. Of course, the costume choice changed twice more in the weeks leading up … Continue reading