by Patricia Roop Hollinger
“I don’t believe this,” I exclaimed to my husband. “The caregiver at ARC informs me that Stephen needs a new wheelchair. The one just purchased last year is already missing a headrest and a foot rest.”
Stephen lives in a home for the disabled; as he was born with profound disabilities and was predicted to die within weeks, then months which now have become 50 years this August 17, 2015.
Oh, I made an attempt to keep him at home, until sleepless nights coupled with uncontrollable seizures gave me no choice but to relinquish his care in a setting where caregivers had 8 hour shifts; thus relieving them of the constancy of his care.
These caregivers are only paid a minimum wage. Thus, the constancy of his care is compromised by the frequency of staff leaving for a better paying job. And, yet, the legislature drags their feet regarding any increase in the minimum wage for workers caring for the ‘least of these among us.
Their primary concern is to halt all abortions. You know their spiel about the sanctity of life, blah, blah, blah. Does that include quality of life as well? Have any of them visited or cared for a child who is profoundly disabled in all facets of their bodies?
Stephen needs touch and a constant pair of eyes and ears. Vicky, a massage therapist, gives him a massage twice a month and then reports to me the state, or lack thereof, of his home and care. She has become my eyes and ears regarding his care.
Stephen, I pray that when you and I both are not bound by the limits of the physical realm we can have a conversation about all these years and the profound impact they have had on each of our lives.
Patricia is a retired LCPC/Chaplain from a inpatient/outpatient psychiatric hospital as of 2010. She is a mother, grandmother, great-grandmother and the daughter of a mother who will be 102 on July 12th, 2015. She is a voracious reader, musician, lover of cats, and is currently exploring her writing skills.