Time in a hospital either moves squeakingly slow or screams rapidly ahead like a run-away Palomino. When the doctors and nurses are feverishly working to save a life, time advances with such speed that it’s impossible to comprehend all the details of what is happening.  On the other hand, after the immediate crisis is met, it is as though time stops.

For many years, my husband was disgustingly healthy. Even though he was born with a hidden disability that surfaced when he was three years old, he was able to move and work without any interference from his “ugly gait.”

In the past 15 years, he has wheeled his chair slowly into the world of hospitals, doctors and therapists. In 2010, we have been immersed with medical procedures, medical miracles and medical mistakes. Sitting in my husband’s hospital room looking out the window, I can see the people move in and out of the hospital entrance.  After living through another day of emergency procedures that saved his life, I’m reminded that hospital time often occupies much of the life of a family with a child who is born with a disability.

The most frustrating part must be that the family totally loses control once they place their child into the hands of the doctors and nurses.  Parents know their children with disabilities inside and out; but they may or may not be consulted once they enter the hallowed grounds of the medical world.  I can imagine that a sense of relief must fill them once they walk into the emergency room; only to be replaced with the frustration of not being allowed to contribute important information that the medical professionals probably need. 

Several months ago, I sat with a caregiver who had taken care of a woman for about ten years.  Now her friend and companion was dying.  The caregiver wasn’t allowed to go back into the emergency room because she was not a family member.  I went to the attendant at the desk and asked why the caregiver could not go back into the room with her friend.  “She is the only family Sarah has.  She has given her life to Sarah for the past ten years.  She wants to be in the room and she deserves to be in the room.” 

The efficient attendant blankly looked at me and said, “She isn’t a family member.”

“She is the only family Sarah has, ” I repeated.  “I’m Sarah’s pastor and her friend needs to be with Sarah.”

“Okay,” she acquiesced.  “I’ll see what I can do.”

Within a few minutes, the caregiver was with Sarah.  In less than 15 minutes, Sarah’s heart stopped and she took her final shallow breathe.  I believe Sarah was waiting for her friend to arrive.  The tender words and moments of reassurance spoken by the caregiver helped Sarah to gently pass into the arms of her loving Father.

Again, I saw that at times the position of a ministry leader within the disability and mentally challenged community may to give voice to and advocate for the rights and desires of the family.  As Sarah gently slid away from us, the caregiver touched my arm and said, “Thank you.”   She had not been confident enough in her place to ask to be with her friend.  But she was grateful that I had helped the hospital see where her rightful place should be.

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