Two years. We’ve lived in a pandemic for two years, and it still doesn’t feel real. Many of our loved ones have gotten COVID, been hospitalized, and several have passed away. I have family members hospitalized with COVID and intubated on ventilators today. Right now.
The collective grief and trauma is compounded for many of us. It doesn’t feel right to normalize it, but here we are. Another Uber Eats gift card. Another prayer request. Another casserole. Another bouquet of condolence flowers. None of it feels like enough.
Today as I write this, I’m doing something else I’ve normalized. Today, my 9-year-old is getting her 11th MRI. She was born with a rare form of spina bifida and has lived with a cone-shaped tumor called a syrinx tangled in her spinal cord nerves for her whole life. She is disabled. So here I am, tuning out the ridiculously loud hum of this ominous-looking machine encapsulating my child. I’m pretending it’s totally normal that she’s lying there with weights on her legs, watching Ice Age through a mirror.
But every once in a while, a thought will cross my mind, and my eyes will notice something- and tears come out of nowhere. I swear they weren’t there just a minute ago. I swear I was fine. But am I? Ever so often, she will break eye contact with the movie and look at me, so I try to make sure I’m smiling. I mouth encouragement with my lips to stay still while the doctors get the pictures they need. I give a thumbs up and a silent clap. I pretend I’m brushing hair out of my eyes instead of wiping away tears.
This is what it’s like to live with caregiver trauma every day. This is what it’s like to have to normalize living in a way that’s not sustainable long term—fighting through a million of those invisible moments, over and over. As my tears fell, I wondered what my daughter’s future would look like, and I felt the bitterness creep back in. It’s a constant battle to reject anger and trade it for mercy. For humility. For love. Sometimes I’m more successful than others.
As I sat in that MRI room, I remembered a day a few weeks earlier. On the way home from school, my 8-year-old with asthma asked out of the blue, “I know we wear masks to protect other people because we love people, but when someone doesn’t wear a mask around me, does it mean they don’t love me?” Again, she’s 8. And those words broke my heart.
Caroline has been hospitalized in the PICU multiple times over the last two years for asthma-related complications. Part of me wants to say yes because I have wondered the same thing. But as a parent, I know I can’t say that. And as my child sat waiting for my response, I had to figure out why really fast. So we talked about how Christ on the cross suffered after doing nothing wrong. We talked about how he prayed to forgive the people that put him there because “they knew not what they did.” We wondered about the crucifixion out loud together. Those people knew they were mocking and murdering Jesus as well as the robbers flanking him, but he forgave them still.
It occurred to me that maybe Jesus wasn’t suggesting that He was the exception, as in “forgive them, Father, for murdering me.” “Forgive them for they know not what they do” is actually very different. To this day, theologians and scholars still debate what actually happened on the cross. Maybe this is because the mystery of Christ on the cross is still much more radical and powerful than any of us could ever fully wrap our brains around. What if Jesus was asking his Heavenly Father to forgive how humanity’s obsession with murder, power, and violence had led him to that moment? What if Christ’s forgiveness is much larger than we could ever possibly imagine? What if his grace is? What if ours could be too?
So as my daughter and I pulled into the driveway, I reminded my child how fully loved she is. I reminded her how spreading love, forgiveness, and grace when it is hard is exactly how Jesus chose to reveal his authority and mercy on the cross. So even when we feel unloved, we choose to forgive and extend mercy anyway, like Jesus.
Caring for medically fragile children in a pandemic is at times an invisible load. Often we’ve had to minimize it greatly for the comfort of many of our healthier and more able-bodied friends. Just like so often, the experiences of BIPOC people are systematically erased in favor of a white narrative; the experience of medically fragile families and image-bearers with disabilities has largely been forced to the margins too.
When I think about the church leaders that have regularly boasted about how they disdain mask-wearing, distrust doctors, oppose health care reform, and refuse vaccines that will keep their most vulnerable congregants safe, I think about how unwelcoming places like that have been to families like mine. If these sanctuaries refuse to prioritize belonging for the least among us, then where do the least of these among us find sanctuary? Does a consistent pro-life ethic include the vulnerable in our midst? How much does the sanctity of their lives matter?
Our family has been blessed to be a part of churches that partner with us so well. They go out of their way to show our kids love in many thoughtful and intentional ways. They listen. They join us in solidarity. They truly care. But largely, when I talk to other parents of disabled children and adults with disabilities, their experience isn’t like mine. Those families are regularly excluded, overlooked, and ignored in many evangelical circles.
Church institutions will cite their insurance policies as the reason they can’t accommodate a child with a particular disability in their upscale environment. Volunteers will feel inconvenienced and scared of liability. So then who will invite that child into belonging? Who will invite that parent? Or do we find ourselves standing as gatekeepers between medically fragile families and the table of Jesus?
Thankfully this is never the case as Jesus is always on the other side with the vulnerable – but that’s a sobering reminder as well. Exactly what kind of table are the gatekeepers protecting? And who will show up to make that child feel safe and that family feel seen?
The church has had a unique opportunity in the pandemic to participate in the grand reversal as it relates to children with disabilities. One of the simplest ways to participate is to simply join disabled families in friendship, advocacy, and the everyday work of bearing one another’s burdens.
I’m not talking about inspiration porn. I’m talking about friendship, belonging, and interdependent community. As a church, throughout this pandemic, how did we measure up? If we asked our disabled, chronically ill, and caregiving neighbors, would they feel safe enough to even tell us the truth? Would they feel safe enough to admit that, at times, the obsession with freedom and individual rights fueled by Christian Nationalism has led them to feel invisible and unloved by the church? Because there are times I don’t feel safe enough to admit that many church leaders’ public positions on healthcare reform, masks, and vaccines, have directly made my family feel unloved by the church institutions they represent.
While the disability experience is not a monolith, by & large caregivers and disabled people are familiar with the feeling of being excluded from environments that seemingly welcome their presence but not their belonging. And I have to wonder if our churches are not fully FOR the least among them first, then who are they really for?
As we continue towards whatever else 2022 holds, may we allow ourselves to be angered at the way medically fragile children have silently endured a different kind of pandemic trauma than their healthy peers. May we repent for all the times our actions and inaction made someone with a disability feel invisible and alone. And may we be willing to change how we pursue the cruciform love of Jesus towards the medically vulnerable so that those image bearers truly know how loved they are.