Monthly Archives: December 2018

Waiting with joy in Advent

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.

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My photo.  Our family at Christmas.

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.

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Photo credit.

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.

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A life of gratitude

Over a year and a half ago now, we lost a wonderful man.  He was a deacon at our church, a playful, yet wise soul, and he happened to be the husband of the pastor I work with at church.  A month or so after he died the family sent out thank you notes with his photo and the caption read, “Just another day in paradise.”

That phrase was Pete’s response more often than not to the casual question, “how are you doing today?” It was maybe 20% conceit and 80% truth–you see, Pete was suffering from Multiple Sclerosis.  He’d needed to ride in a wheelchair, and he had lots of body parts that didn’t work the way they once did after many years of living with the disease.

But if you got Pete talking on the subject of “paradise,” he’d almost always follow that up with something about his life being “an embarrassment of riches,” and that was something I know he meant with his whole heart.  Even from his vantage point in his wheelchair, his body failing, Pete could see that what was important, even lavish was his own very life and the people in it, and they made that life worth living every single day.

Pete
Pete, rolling through life with style.

Around the time our daughter Lucia was diagnosed with a terminal, genetic, progressive disease of the brain, my husband heard a radio broadcast about other kids with a similar rare disease, to which parents mentioned two lifestyle options–you can either fight like hell seeking a cure, they encouraged, or you can sit in a corner and mourn this terrible disease.

But if you’re any reader of this blog, you know that my husband and I have tried to make way for at least a third option, one that kind of reminds me of how Pete lived his life.  Because, although to some extent everyday is a struggle with and for our daughter Lucia, everyday it also somehow just as it should be.  Pete’s perspective on an “embarrassment of riches” truly resonates now that we’ve had four years with a daughter we were never guaranteed.  And that perspective, on the days where she’s struggling to keep any food down or inexplicably crying in pain, makes all the difference.

Cinderella
Lucia, also rolls through life with style.                                                                                                   Pictured here in her Cinderella Halloween costume that her nana made for her.

I guess the lifestyle philosophy I’ve learned from Pete, my life, my daughter and others around me goes something like this–you either wake up convinced that the world is not as it should be, or you trust that there’s some wisdom, some perspective, some peace to be found in acceptance of this precious life you’ve been given, and you go about living it not with resignation, but with gratitude.  And gratitude, somehow, makes everything whole.

That’s what I saw and learned when I interacted with Pete, that he wasn’t papering over the difficulties and playing Pollyanna, but that in his wrestling, he’d found his way to sincere gratitude and that gratitude permeated every corner of his life.  Someone noted the other day that even when I tell them about the difficult times with Lucia, I’m usually smiling.  How can that be true? they wondered.

Because life with Lucia is a gift, plain and simple.  And life with Pete was a gift, too.  

Even on the roughest days, I can’t help but see life lived with Lucia as “another day in paradise,” “an embarrassment of riches.”  It’s not trite, just true.  And just as Pete taught me, I try to share that life of gratitude with others.

You can find my colleague, Beth Scibienski’s book, Who is God When We Hurt? that chronicles her life with Pete, her caregiving, her faith, and her grief by clicking here.

Our preparations are not our own

I was really humbled to preach the first sermon in Advent at chapel yesterday at the seminary.  For those of you who have been asking, here is a transcript of the sermon.  

Blessings on your Advent preparations!

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Zechariah, Elizabeth, and John.  Photo credit: Sweet Publishing/FreeBibleimages.org.

As begin our journey in Advent this morning, we recall that the narrative of Jesus’s birth in Luke is intertwined with the parallel story of John the Baptist’s birth and his parents Zechariah and Elizabeth.   In verses 5-20 of chapter 1, we are plunged into what Joel Green calls “the small town struggles of a little-known priest and his wife…the atmosphere is permeated by the piety of Second Temple Judaism and Jewish hopes for divine intervention.”

Now we’re living in a very different context than Zechariah and Elizabeth, but they feel like people we seminarians can relate to. They’re pretty faithful people. They’re really faithful people. Zechariah is a priest who’s given the honor of entering the sanctuary and offering incense in conjunction with sacrifices. The scripture tells us that he and his wife Elizabeth “were righteous before God, living blamelessly according to all the commandments and regulations of the Lord.”

But in placing their childlessness directly after their high religious and social status, the scripture isn’t just showing us their social disgrace but reminding us of their suffering. For Zechariah and Elizabeth who scripture tells us are “both getting on in years” we can only imagine that if they have been struggling to conceive for quite some time, they have likely known the pain of losing children, carrying hope and letting go of it.

And so when the angel of the Lord appears to Zechariah, fear overwhelms him and though he’s told he and his wife will rejoice at the birth of a son John who will be great in the sight of the Lord, he doesn’t believe it. “How will I know this is so? For I am an old man, and my wife is getting on in years.” We’ve been prepared for years for this, Zechariah thinks. We’re in the temple everyday, we’re faithful, we’ve prayed and yet our prayers have gone unanswered. How will we know this time will be any different?

I find some solace in this beginning to Advent, this hard place, this small story in which God comes close and carries out God’s very plans amidst our lives. But I struggle to believe, too. You see, I have been pregnant during Advent, filled with the expectation of a child, of hope, of new life, but I have also miscarried in this season. And a few years ago, during Advent, even after having a child, my husband and I were still waiting. Following our daughter’s seizures and hospitalizations, around 10 months they did some blood tests, they sent them away, and we waited for a diagnosis.

And when we got our daughter Lucia’s diagnosis, a progressive, genetic disease of the brain, I remember wanting to be prepared. I googled the symptoms, the treatments, the prognosis. “Death in early childhood” it read. And so I remember wanting to be prepared for when, for how, for what that would look like, so I googled a lot more. We got a diagnosis and now I wanted a prognosis. I remember wanting to be prepared.

But for what? So I could hold back just a little bit, so I could love her…just a little less? What?

Now I would be lying if I told you that as a parent of a child with disability and a scholar of disability that I wasn’t pretty uncomfortable with a text this morning that seems to use muteness, disability, as a punishment for doubt and disbelief.

But my own experience also makes me wonder if there’s more to what God is communicating here. Because I remember that feeling of seeing the beautiful child God had put before me and yet wanting even more reassurance that things would be okay. Maybe that’s where Zechariah was, too, after all that waiting, even with the angel’s proclamation, he just wanted reassurance that things would really be okay. Even the good news wasn’t good enough to overcome all his fears, his plans, his googling. Maybe for Zechariah and for me and for you, we have been tempted to continue doggedly on with our own plans, because at least it gives us some control. When we begin the story, Zechariah and Elizabeth are seemingly in control of their lives and where we end our lesson this morning, perhaps the problem is that Zechariah is still struggling for it. He’d rather cling to control than experience what God has in store.

And so silence that looks like a curse of Zechariah’s unfaithfulness may be the very reminder in this Advent season that God is active in our smalltown lives even when we don’t believe it to be so. That loss and heartache and suffering and pain are the very places where God seeks to meet us, but where we often try to control that God who wants to break into our lives and our world with radical, reckless love. The best thing that God did for me in that Advent season was not to give me a clear prognosis, a healthy child or a new computer where I could google my future to death, but like Zechariah, God invited me to lay beside my plans and just love the person in front of me. God gives us life to go on living, not always in the form of children, but always in the people beside us and the ordinary circumstances of our lives—reoriented, shifted, rerouted toward the extraordinary love of Jesus Christ, our savior.

That son who will be born to Zechariah, John, will go onto urge us to “prepare ye the way of the Lord.” But make no mistake this Advent, we are but participants in the saving work of God, Jesus, and the Spirit. Thank God that our preparations are not our own.