- Joined
- Feb 23, 2014
- Messages
- 2,636
- Reason
- Lost a loved one
- Diagnosis
- 01/2014
- Country
- US
- State
- NC
- City
- Littleton
That was Barb Long's FB post yesterday, that Jeff is now with Jesus.
Jeff's is the first public message to my account; he lead us to our wonderful PVA rep, and as a result helped us in so many more ways.
We were fortunate to meet Jeff, Barb, and their beautiful daughter Kaylee two years in a row in Washington DC, while lobbying for ALS funding with the ALSA. This year we enjoyed a wonderful dinner with them, sitting outside at a resturant on a lovely evening. As I recall, Matt and Jeff both parked their PWCs on the sidewalk, flanking the entrance to the dining area. Matt's transfer was difficult, Jeff was still able to walk.
What Jeff couldn't do is use his arms or hands. Barb fed him dinner, alternating a bite for him and bit for herself. They were the picture of a loving couple, laughing and smiling through the entire meal. For those who wonder, because of their open, loving enjoyment of the meal, there was nothing akward about it. People smiled at us, but there were no akward stares. In addition to being delightful company, on that evening they showed us that the future is what you make of it, regardless of your condition.
Last weekend's FB posts showed Jeff, Barb, and Kaylee at at football game. He was dressed in his jersey, and with assistance he stood for the national anthem. He looked wonderful. If you did not know about ALS, you would think him the picture of health--a testament to his inner light and his wonderful caretakers.
My heart greives everytime we lose a PALS, but this one is especially difficult for me. My grief is only assauged by the comfort I know his family feels because of their faith and the loving community they have built around themselves. We should all do it this well...
Jeff's is the first public message to my account; he lead us to our wonderful PVA rep, and as a result helped us in so many more ways.
We were fortunate to meet Jeff, Barb, and their beautiful daughter Kaylee two years in a row in Washington DC, while lobbying for ALS funding with the ALSA. This year we enjoyed a wonderful dinner with them, sitting outside at a resturant on a lovely evening. As I recall, Matt and Jeff both parked their PWCs on the sidewalk, flanking the entrance to the dining area. Matt's transfer was difficult, Jeff was still able to walk.
What Jeff couldn't do is use his arms or hands. Barb fed him dinner, alternating a bite for him and bit for herself. They were the picture of a loving couple, laughing and smiling through the entire meal. For those who wonder, because of their open, loving enjoyment of the meal, there was nothing akward about it. People smiled at us, but there were no akward stares. In addition to being delightful company, on that evening they showed us that the future is what you make of it, regardless of your condition.
Last weekend's FB posts showed Jeff, Barb, and Kaylee at at football game. He was dressed in his jersey, and with assistance he stood for the national anthem. He looked wonderful. If you did not know about ALS, you would think him the picture of health--a testament to his inner light and his wonderful caretakers.
My heart greives everytime we lose a PALS, but this one is especially difficult for me. My grief is only assauged by the comfort I know his family feels because of their faith and the loving community they have built around themselves. We should all do it this well...