This whole Covid-19 thing is hard for everyone. Many of you still have to risk your health and the health of those you love in the workplace. You do this in service to your fellow humanity, and we're grateful. Many of you have suddenly become work-from-home employees. Within your personal family space you're now expected to carve out protected turf and hours for your employer. Many of you are unemployed and are spending your days navigating systems that were not designed for the stress of this time: unemployment, health insurance, debt load, etc.
Many of you have become instant home-school parents. Coupled with the above realities, it's really too much to expect any reasonable human to manage. Some of you are suddenly alone, distanced because you are single, or sequestered because you live as part of a particularly vulnerable community. Too many of you are facing long days with partners who are uncaring at best, hurtful at worst.
Some of you have lost loved ones. We've all lost admired ones. Some have been ill and have recovered. Some are ill now and fighting, struggling. We all have reason to wonder.We're in these strange and anxious times together. Whether you believe that Covid is "real" (and I still can't conceive of why anyone wouldn't) or are convicted that it's some great political scam being pulled on the globe (check your sources, please), we all share in the frustration, awkwardness, and tension of the time.
Most of us have some mental frameworks to apply to this crisis. Those frameworks may be inadequate. They may be unsatisfactory. They may not be the "right" ones. But as neurotypical folks, we have ways of making uncomfortable sense of what's going on.
My son with Williams Syndrome does not have those mental frameworks. The foundation for those frameworks is literally missing from his gene array. His gapped-out seventh chromosome mind has nothing to hold these days together with, and the things that typically provide a substitute for that logical shape are essentially taken from him. Physical distancing has eliminated the few "tricks" we have to keep the peace and provide at least a limited amount of focus for each day.
What's that look like? Well, for the last three mornings it looks like 4:30 a.m. attempts to head outside in order to watch the workers renovating a nearby building, followed by repeated battles to keep him safe and redirected throughout the day. The battles are epic: he has a colorful vocabulary and somewhere along the line has learned effective insulting. He's threatening, and there's enough history to know that he's not just bluffing. His head-strong willpower is fueled by a very real inability to understand any logical argument. His frustration leads to anger leads to..... well, lots of things.
Three days ago the police met him on the street. Through a story told by Ben and an interpretation rendered by the officers, he ended up in the back of an ambulance and bay 14 in the local ER. None of it was remotely necessary, and with Covid 19 on the loose, fairly troubling. But this was the result of an anxious and confused adult who doesn't understand what's going on. You decide whether I'm referring to Ben or the officers.
The truth is, I don't understand what's going on either. I'd love to write like so many encouraging blogger-parents of kids with special needs that the joys far outweigh the trauma, that I have learned the intended lessons of grace, and that somehow I have discovered powers that I never would have known I had if it weren't for parenting Ben.
Sure, some days I feel that way. But not today.
Today I see that my mental and spiritual frameworks don't satisfy my need to make sense of our family in the midst of this crisis. I realize that pandemic distancing mostly reflects a daily reality for Ben and me and reflects many points in our family's social history. Uncovered within me is a level of frustration that has the potential for violence. Today my compassion and patience have very real limits.
I am angry. I am sad. I am overwhelmed. I am exhausted. And largely I am, like a lot of parents with developmentally disabled kids, lonely.
I'm not writing for sympathy or for "help." I'm writing so that you who have no idea what it's like to parent a developmentally inhibited adult child can hear the raw and painful truth. I'm writing so that those of you who are facing your own new challenges (and maybe even demons) during these days will have the courage to recognize your (ugly, confused) self and trust the truth of your situation. I'm writing so that we might consider how our own privilege and perspective is never definitive for someone else, but is imperviously representative of the truth we carry in our own lives.
For my fellow sisters and brothers in the Judeo-Christian faith story, this is a Psalm 22 moment. Please don't try to religious jargon it away. Yes, I have faith and a relationship with God through Jesus. It's a real one, and a lifelong one. But it's messy, and today that's the best I got.
Sometimes the hardest thing to admit is that we don't understand, that all the books we've read, lectures we've attended, sermons we've internalized, podcasts we've listened to, classes we've taken, and experiences we've had haven't actually prepared us for the physically distant space we're in.
Right at this moment, that's exactly where we are.
Ben doesn't understand, and I don't either.
And that is hard.
And that's OK. It's all we've got today.
