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Sitting in the family waiting room. Waiting and waiting. My head is swimming slightly with a combination of exhaustion from a 5 a.m. wake up and nervousness of not knowing what it is going on. Our son has been in surgery for four hours. Still two more hours to go. Then comes a long healing … Continue reading
It finally came. The day I’ve been trying to avoid for months. The appointment with the dietitian. At our last appointment, more than a year ago, I had been told that if Deane didn’t gain close to 10 pounds, it would be time to look at a g tube. I’ve written before about our – … Continue reading
“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
“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
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
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
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
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
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 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
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