-
Subscribe
Subscribed
Already have a WordPress.com account? Log in now.
It was a long day. Deane found it long. I found it long. It wasn’t because it was traumatic. It wasn’t even hard. In fact, Deane made it look easy. At morning rounds, the nurse reported that Deane had been off his oxygen mask for a total of 6.5 hours yesterday. The doctor suggested we … Continue reading
On the way home from the hospital, I fell asleep on the subway. Almost missed my stop. I guess adrenaline will only take you far. Deane is not running on adrenaline. He is, as they say in sports journalism, gutting it out, digging deep and – do I dare say – giving 110%. Today … Continue reading
My husband and I sat by Deane’s bed yesterday afternoon and read the many, many amazing messages that we have received conveying warm thoughts and prayers for Deane. We can’t begin to express how much this means to us. Knowing that there are so many people, some of whom are friends of friends we have … Continue reading
It’s not wise to go looking for drama when you’re in the hospital. All too often it will find you and it’s not good. But when there aren’t any big developments, it’s hard to know how things are going. That’s how Deane’s fifth day in the hospital has been. It’s not that nothing happened. Late … Continue reading
A queasy feeling churned in the pit of my stomach when I realized my child was being moved to the ICU. At 8 a.m. the night nurse told me Deane had had a fever that spiked in the middle of the night. It had been another night of constant de-sats and suctioning. Within an hour, … 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
disabledfamilies 