Everyone is battling something during the coronavirus pandemic – some battles are more painful than others. My family’s battlehas left all of us, especially my mother, suffering: the pain of not being able to see her firstborn child, my sister, Rebecca.
My older sister is severely disabled and lives in a group home. Since covid-19 began sweeping across the United States, my mother has been isolated from visiting her, something she has done weekly since Becky moved two years ago.
It’s been a crushing burden to bear. Rebecca is 36-years-old. She is vocal but not verbal, wears diapers, needs to be bathed and fed, and she needs constant care and assistance. She is a little girl trapped in an adult’s body.
Doctors never diagnosed Becky with anything specific. They said only that she presents herself as though she has a syndrome, with autistic characteristics. Maybe it was a problem with her genome? A chromosome? No one has ever been able to say definitively.
But it didn’t matter. Becky was loved, and perfect in the eyes of our family. My mom treated us as equals while she raised us by herself. Life wasn’t easy. From an early age, I knew my family was different. I watched my mom work multiple jobs, lose relationships, and continuously question the future – specifically, my sister’s fate. I watched her struggle as Becky became more aggressive with age. I was witness to my mom’s anxiety and panic attacks, when she lost hope and didn’t know if she could go on.
For years, as I followed my own career path around the country, I found solace in knowing my sister was safe with my mom. Now, that would no longer be the case.
Come May, it’ll be two years since my mom decided to move my sister to a group home. It was a painful decision made for a variety of reasons. At 62, my mother suffers from a host of ailments that made it increasingly difficult to care for Rebecca on her own – something she had done as a single mother for 36 years. In the back of her mind, too, was a fear of the inevitable: what would happen to Becky when something happened to her? She wanted a say in where my sister was placed, and didn’t want to burden me with those decisions if she was no longer here.
So we found the perfect place for my sister: a group home in a quiet neighbourhood close to where we grew up, with only four residents, including Becky.
It was still hard. The first time I visited, I broke down in front of the staff. Would my sister be safe? Would she be well cared for? Would she be happy? For years, as I followed my own career path around the country, I found solace in knowing my sister was safe with my mom. Now, that would no longer be the case.
I eventually overcame my preconceived notions and thoughts. Technology helped. I was living in Richmond, Virginia, at the time, and I was able to see Becky via FaceTime. For the months that followed, knowing my mom visited my sister every week felt like a warm blanket of reassurance.
After two years, I had begun to grow accustomed to it all. Then, a once-in-a-lifetime global pandemic struck, forcing us all into quarantine and isolation.
It’s been a month since my mom last physically saw my sister. We’ve both relied on weekly calls to get us through. My sister seems happy. Her caregivers, angels on Earth, FaceTime us when she’s outside playing in their backyard, watching her favourite video tapes, or eating her dinner.
Becky looks good. She looks healthy. But I always find myself worrying: does she understand what’s going on? Does she think we’ve abandoned her? The never-ending guilt that I feel for just being the child that was born ‘okay’is enhanced by constant worry and fear.
Most frightening of all are the laws some states have in place that could restrict people like my sister from receiving lifesaving treatment
Across the country, the death toll is climbing inside group homes for the developmentally disabled. According to NBC New York, 156 disabled group home residents have died after testing positive for covid-19. Besides underlying health conditions, people like my sister are living in residential quarters among many other people and with nurses and staff who are continuously coming in and out. Social distancing and quarantining are nearly impossible.
I’ve read articles about aides and nurses in these homes lacking PPE and protections needed to provide adequate and safe care – they aren’t offered enough testing either. Most frightening of all are the laws some states have in place that could restrict people like my sister from receiving lifesaving treatment if they do get sick with covid-19. If she’s infected, will she not be given a respirator because she isn’t viewed as vital by society.
At least my sister has my mom and me. We will fight to the death to protect her. But what about all the people with disabilities who have no one to advocate for them? My heart breaks daily as thoughts of horror swirl inside my head. I pray I find the resilience to fight through.
For now, I’m thankful for my sister’s health and the technology that allows my mom and I to see her, say we love her and that we’ll always care. But in these times, I can’t help but worry.
Allison Norlian is a Emmy-nominated journalist. Follow her on Twitter at @Allison2Names
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