When you carefully examine why people who offer a helping hand in the beginning often disappear, it can sometimes be attributed to a perceived injustice "you didn't take our advice", or "well, you could pick up the phone, too" (that is between 4 hours of manual ABR, 10 hours of machine ABR, diaper changes, pureeing foods, lengthy feedings, appointments and a few precious hours of sleep), or "you're always welcome to visit us at our homes" ( but is your home wheelchair accessible, nearby, has a hospital bed, nebulizer, suction machine and a case of enemas?). Somehow when taking your child to a movie down the street is a major production, traveling many hours in a wheelchair van with half the house packed in back just doesn't seem reasonable. But, calling, visiting, etc. is something we should do regularly if the playing field is to be level? Gee, it's not!
Also, when you examine why some old friends disappear and you and your disabled child are no longer their social good-will project, you hear the same type of dribble which always assumes the playing field is level. Here are a few: "Well, you have a phone, too.", "This is too hard to look at, it's like Adam sees into your soul.", "Just so very busy.", "It's depressing.", "You have such a hard life.", "We don't know what to say or do." And so it goes. Thankfully, my South and Central American ABR comrades have assured us that this is a cultural, American phenomenon...or so I hope.
After a time, you realize that the journey is lonely yet personally inspiring; disability exists only in the eyes of the beholder; and inability to move or speak makes for a pure soul, a contorted body is merely a temple of the source. Few are willing to accept these realities and so they make up a "personally plausible story" why it's too hard to stay connected for the necessary years of care-giving, however long that may be.....authentic healing is a long, loving process. Parents embrace the process because they connect with the deeper roots of love.
