The residential care facility where I worked as a nursing supervisor was seeking host families to participate in a Life Sharing program. Life Sharing matches a family with a developmentally disabled individual currently residing in a large facility or group home in an effort to provide him or her with a less restrictive living situation. My mother had recently passed away, leaving me her large, fully accessible home. With my children grown, I was feeling the sting of an empty nest. Life Sharing seemed like the right thing to do.
The young woman matched with me and my husband was 33 and had been institutionalized for many years with diagnoses of Down syndrome and autism. Unable to communicate verbally, she was proficient in making her needs known through a combination of body language and facial expressions. Although I was a bit anxious at first about taking on such a huge commitment, I convinced myself that it wouldn't be a problem. After all, I was an experienced nurse. How hard could it be?
Rough start
One of my first mornings with Katie answered that question. I adjusted my hours to accommodate Katie's day program schedule. I helped Katie get ready in the morning, dropped her off, proceeded to work, and picked her up on my way home. This plan worked for 2 days.
On the third morning, Katie refused to leave the house. She lingered at the kitchen table, enjoying the sun. Frustrated, I went to the bathroom and burst into tears.
Somewhere in the middle of my tantrum, I realized that this woman wasn't a child I could simply bend to my will. She was an adult with her own preferences. Her nonverbal communication made it clear that they weren't the same as mine.
Yes, she was "supposed" to attend a day program, but who'd decided that for her? If Katie could communicate her thoughts, chances are she'd choose an entirely different life than the one laid out for her.
That morning, I realized that in 30 years of working with intellectually disabled individuals, I'd never treated these men and women with the respect they deserved. Deep down I saw them as children in grown-up bodies needing my guidance, and protection.
I waited a few more minutes, then asked Katie again if she was ready to go and she agreed. We both ended up making it to work that day-a little late.
New perspective
Having Katie in our family has transformed the way we look at people with intellectual differences and has helped change the way I look at life in general. At work, I'm more understanding when a harried staff member is late bringing a patient to an appointment or misses wiping up a bit of lunch left on an individual's shirt. I find myself worrying less about routines and schedules and spend more time just being.
In Katie's mind, everything can wait while you enjoy the sunshine. Because of her, I'm seeing life through a wider lens. Although I'm not quite there yet, I'm definitely learning to separate what's important from the small daily irritations and anxieties that only seem important but soon fade away.