They are the social media forums that are the windows to our souls–an article about the lack of services for young adults with disabilities making the transition from school to work and out of the home is bookended by a comment from a mother whose daughter is only two and a half, but she says these are the very challenges that already keep her up at night. Another post in a Facebook group is from a mother who’s just given birth by emergency c-section but less than 24 hours later she’s writing to ask if there are other parents whose children had similar births. How were they affected? she asks. What did their futures hold?
A few weeks later I sit in the pews in the second week in Advent and the pastor up front tells us about a question put to her at the beginning of this school year that she’s still pondering in this season, over four months later, and she asks it of all of us:
“What are you waiting for?”
I am not waiting for my daughter to die, speaks a still, small voice inside of me.
It’s a statement that feels so foreign to my being that I’m altogether startled by it, as if I brushed up against it and now I’m disoriented and dizzied. No one waits for their child to die, I ponder…and yet we all do, in a way. In fact, how many of us really live our lives longing for, with an expectation for life, rather than death?
I think back to those message boards and I see people for whom the future is tyranny and agony and for whom waiting is shot through with worrying and fear, one might say even death and despair. As a parent of a child with a terminal disease I know that I would not be able to live with the tyranny of the future looming like that. I’m not saying that I do not have moments where I blink back tears, so starkly aware for just a moment that life without my daughter seems altogether bleak or meaningless. I have also had moments where her suffering seemed to be costing her too much in the land of the living.
And that thought didn’t come from nowhere. Clearly, I am not immune, as anyone who lives in this world, to the reality of the pain of death.
But I realized relatively early on that while embracing Lucia for who she was would mean embracing death, it would also mean living an extraordinary life quite impossible without her.
A few weeks ago as I preached that first week of Advent, ruminating on John the Baptist’s birth, a friend of mine pointed out that Zechariah and Elizabeth, like Mary and Joseph, would have their greatest longings for life granted in this child, only to find their greatest heartbreak in his death. Another friend of mine pointed out recently, and I’d never thought about it this way before, that these parents were living with children who had terminal diagnoses. Jesus was predestined to die a premature death.
But there’s so much more to the story, as we know. And Jesus’s story, even as it is often overshadowed by his bloody, violent crucifixion, was all about overcoming death–it was all about radiant, redeeming, everlasting–life.
What are you waiting for?
What are you waiting for??!
The question begins to scream at me. Because I can plainly see how the story of Jesus’s life, his parents’ lives, all our lives, are not so much about death, but about living life with abandon, with reckless, heartfelt love that bleeds out all over those around us who are suffering here on earth. What if that kind of all of us-all on love, is what life, not just death, is really about?
As she closed her sermon, the pastor talked about how so much of ministry is about waiting with people. And suddenly it occurred to me that when people wait with me, they’re often assuming we’re waiting for Lucia’s death–they tiptoe, they want to walk with us gently and patiently toward an inevitable tragedy, an inevitable heartache. But I just don’t think that’s how God sees Lucia and her life. And that isn’t how God is with us, how God has waited with us all these years.
It strikes me that in this third week in Advent, as we light the candle of joy and we celebrate joy in Jesus’s birth, as well as Jesus’s life, death, and resurrection that the tyranny of the future really threatens to rob us of the joy of the present. That how we wait is as crucial as what we are waiting for.
So as for my family and I, the tyranny of the future can wait. We will go on living, looking for signs of life, not just in this season, but in every season. And we will wait with joy.