Deciding to experience an abundant life allows for the fewest regrets in the end

posted on October 1, 2011 - 12:33pm
Many years ago, when the physician said that my son Joe, who had type 1 spinal muscular atrophy, perhaps would live until 2 years old, I went into “Rambo mode,” ready to attack anything that got close enough to harm him. But as the years went by and Joe’s health held stable, I silently vowed I would do my best to allow him to live outside the sterile little bubble I had created around him.
posted on October 1, 2009 - 3:10pm
QUEST Vol. 16, No. 4
Q: What could possibly be bad about children with neuromuscular diseases living longer life spans than has been common in the past? A: As these children become adolescents and then adults, they encounter a medical system and society that are not prepared to accommodate them.