Conversational Land Mines, Medical Edition

“It’s been two years since the boy’s routine clinic visit,” the doctor reminded us with an obvious, intentional tone; “It’s supposed to be every year.” I tilted my head and squinted my eyes a bit ~ seriously? “Well, there was that small matter of The Pandemic…” My wife interjected, “We discussed tele-medicine as an option,… Continue reading Conversational Land Mines, Medical Edition

Sushi for Lunch?

So, many of you who know my son also know Sushi the Badger, a tangible manifestation of one of his many “imaginary” friends.  Sushi is part of the family–sometimes a very annoying part, especially while we all sit in traffic during a rush-hour drive to the hospital–but it’s a voice and a friend.  What’s a… Continue reading Sushi for Lunch?

Coming & Going

There’s something undeniably nice having a home that is a hub of activity: People coming and going, tea and coffee, classes, conversation, kids playing, … and in time the house quiets and the family regroups, ready for another round tomorrow. It’s part of our own reality that getting out as a family becomes more difficult… Continue reading Coming & Going

On the 20th Anniversary of the Americans with Disabilities Act

Twenty years ago—only a few months after finishing the physically challenging Army Basic Training—was only half of my life ago, yet it was also ten years before the birth of my ten-year-old son with Duchenne Muscular Dystrophy (DMD). There is no way I would have imagined then that we would be hanging the handicapped placard… Continue reading On the 20th Anniversary of the Americans with Disabilities Act

What is Disease? Letter to the IAFF through MDA

Firefighters of the Eastern Region! It is a beautiful spring day! The sun is shining brightly and a cool breeze blows. In this moment, it is so easy to look at our lawns and forget that not so long ago they were buried in over four-feet of snow, and it is so easy to look… Continue reading What is Disease? Letter to the IAFF through MDA

A Note on Health Care Reform

My nine-year-old son has a pre-existing condition.  He’s had it since birth.  It’s Duchenne Muscular Dystrophy (DMD).  It’s incurable and it’s steadily degenerative. Through no fault of his own, I lost my job sometime ago.  Through no fault of his own, I could not afford COBRA payments, which for a family of four were on… Continue reading A Note on Health Care Reform

Baltimore FD Fills the Boot for MDA!

Joby and I spent all day Tuesday with the brave firefighters of Baltimore City. For Joby, it was a chance to meet the big city’s firefighters and to see trucks and other equipment; for the firefighters, it was a chance to meet Joby and his family. For over 70 continuous years—including the last 50+ years… Continue reading Baltimore FD Fills the Boot for MDA!

MDA Camp Canceled / The Story “Maybe”

For those keeping up here rather than elsewhere, we received our next rude jolt from the Universe Friday evening. We were sitting at the pool with friends while our kids splashed about when at 7 P.M., my wife’s phone and my phone began ringing in sequence with numbers we didn’t recognize. Checking the voicemail, it… Continue reading MDA Camp Canceled / The Story “Maybe”

Children’s Hospital Visit

We had a full day in the hospital as our son was in for full work-ups in cardiology and pulmonary departments. As usual, nothing went as planned, but that’s not to say it was a terrible day. Children’s Hospital truly is an amazing place to visit, with so many levels of humanity operating simultaneously right… Continue reading Children’s Hospital Visit