What my Little Girl Taught me about Resurrection

Long before any of this—not only before she died, but before she lived—God was dreaming of Leonie. He was dreaming of a double-lashed little girl with skinny legs and a hairy back. He was forming for me--for us—a kid with an irreverent squeal and old lady’s raspy laugh, with a cartoonish pout, dainty toes, spiky hair, and eyes the color of the sea. Or I don’t know exactly how things work, but I do know that God knew what was coming for me, that he designed Leonie and me for each other—that he knew that in this broken world where, more than we would like to admit, hopes are crushed, hearts broken, tubes clogged and ventricles swollen, Leonie and I needed each other. He brought us together in this brief moment in time especially designed for us.

Why? There are some specifics I still don’t know, obviously. I think Leonie’s life is going to continue to touch people, to teach me things and even surprise me for years to come. But there are some specifics I do know. For example, I know that Leonie sharpened our senses, our ability to see the smallest, most beautiful things like the reflection of light on a wall and our ability feel the most subtle textures otherwise unnoticed as we helped her trace her fingers over the pages of a book or pressed her palm into a ball of playdough. I think that when I laughed racing down the hallways with her wheelchair or made her smile with a warm bath or when we slept together after watching some trash TV show that we will both keep secret until we die—I think those were gifts. Those were part of the reason why.

But Leonie brought another gift too—a stranger, gift—a harder one—because she also sharpened our senses in another way—in the way we saw the dark things, the forgotten things, the ugly broken, terrifying things of the world. When Leonie was younger, she was in the hospital a lot and for a while I felt like we lived there. I would spend days and nights sitting in a chair with her, lines and tubes tangled over my lap, while she cried, and alarms went off incessantly. Sometimes I would get coffee in the lounge or run down to the 24-hour Subway and walk past rooms peeking in like the nosy person I am and see machines I’d never seen before, hear people groan or cry, see the hunched up figures of family members under blankets, pass teary eyed parents in the halls, see a photo of a hummingbird being taped up to a door next to a child’s name—the sign that meant death—looked in the mirror and saw my greasy bangs, the dark circles under my eyes, the way my hands shook with nerves and exhaustion, and I saw desperation, fear, pain. Even outside the hospital, we’d catch the eyes of other people pushing wheelchairs or helping loved ones order food at a mall food court or in line at the social security office and we felt like we understood something; we talked to sick people stuck in the dreary tedium of hospital life, feeling like maybe they were stuck in some alternate freezing, beeping universe where they were forgotten by everyone, even God—and we thought we could imagine it.

And I think that this pain and sadness and even anger that we felt more sharply with Leonie were actually from God too. I know they were. Because the reality is that all of us live in a broken world. So it’s not just the wheelchair races and moments that I felt joy that were gifts, but also the moments of pain. It was a blessing to laugh with her, but it was also a blessing to get on the phone and fight with the social security office, and tell everyone I knew about how broken the healthcare system is and how the disabled and sick and poor are left to fend for themselves in a world where politicians care about money and power and not the least of these. It was a blessing to be moved in a deeper way by the millions and millions of people who suffer far more than me or my family or any of us here—to be able to see them in sharper focus. It was a gift—a hard, terrible gift—to be reminded of our own mortality, of the fragility of even our bodies.  

Because I’ve been telling myself over and over again that Leonie’s body wasn’t really made to last, but if we’re honest, our bodies aren’t made to last either. If we’re honest, we’re all living with brokenness and beauty all mingled together, something that Leonie embodied so clearly. And maybe we can fool ourselves if we’re healthy or have a beautiful house or if we’re really smart or successful. We can think that the world is okay—that we’ll be okay and our families will be okay. But when you have a kid like Leonie, there’s no fooling yourself. You see things for how they really are—you can’t help but be surrounded by sickness and poverty—you can’t help but be angry with the evilness of the world--you can’t help but see things more closely to the way God sees them. And it’s hard. As I always tell my three-year-old, “It makes me sad and mad.” But it’s also right. It’s also a gift.

So this is the particular, special gift of Leonie, to live in a deeper way in both brokenness and hope. To live in truth. Because the truth is, we’re all living in a time of advent. And it’s a hard time—a time I personally want to be over now—but it’s a time when we can still participate in doing good, in helping others, in a living hope and a long, drawn-out birth. But Leonie reminds us that we have hope. We have to have it or we might as well just stay dead here now.

My hope is not always strong—especially not at night when I’m alone, so you can pray for me, but I do have hope in a resurrection. And Leonie’s death has made my resurrection hope not only more necessary, but more specific. Because by resurrection I mean, I have hope that my pain will be resurrected in ways I can’t imagine—that maybe Leonie’s pain and mine—and I don’t mean this in some general way--I mean the specific pains and hardships—the vomiting, the shortness of breath, the seizures, the paralysis, all of the specific limitations of her body and mind—and my pain too--my specific worries, my sleeplessness, my grief about her quality of life, some very difficult specific nights, my loneliness etc.—that all of those particular tiny little things that I don’t even remember—are seen and remembered by God and that he will take each one in his hands and will actually make them into something new and beautiful in a new life when heaven and earth come together and this is all remade. Nothing, nothing beautiful or happy, nothing bad or painful or difficult will be for nothing. Not for me, not for you, not for any of us. Because I know we’re here about a specific loss, but we all have losses, we all have hurt and we all need this hope.

I think of 1 Corinthians 15:58 that says, “Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.”

And I remember during a particularly hard time with Leonie, reading the words of N.T. Wright that encouraged me about my work as mom. It said,

You are not oiling the wheels of a machine that's about to roll over a cliff. You are not restoring a great painting that's shortly going to be thrown on the fire. You are not planting roses in a garden that's about to be dug up for a building site. You are -- strange though it may seem, almost as hard to believe as the resurrection itself -- accomplishing something that will become in due course part of God's new world. Every act of love, gratitude, and kindness; every work of art or music inspired by the love of God and delight in the beauty of his creation; every minute spent teaching a severely handicapped child to read or walk [or in my case just reading TO  her, caring for her basic needs]; every act of care and nurture, of comfort and support, for one's fellow human beings and for that matter one's fellow nonhuman creatures; and of course every prayer, all Spirit-led teaching, every deed that spreads the gospel, builds up the church, embraces and embodies holiness rather than corruption, and make the name of Jesus honored in the world -- all of this will find its way, through the resurrecting power of God, into the new creation that God will one day make.

This means my work, your work, and Leonie’s work too. I’ve been talking about all of her hardships and delays, but Leonie ministered to us too. She was so kind. Seriously, Leonie forgave us everything. When we left her too long on the couch or I was too busy to entertain her, when we tortured her with the suction machine, it didn’t matter. She always had a smile for us afterward. And she was compassionate—she was super bright-eyed and alert. She watched all of us carefully and cried when we cried. She worried about every tantrum and complaint. Fiore always said, “She takes care of us.” And it’s true. Leonie enjoyed her life despite everything. If you think of Leonie, don’t imagine a little girl stuck in some corner living life passively If you don’t know what she was like, she took joy in others so much. Any time we danced with the other girls or threw them around she laughed hysterically and looked on in wonder. And everything about her, difficult wonderful, beautiful--even the things I didn’t see--will somehow be resurrected too. No tiny detail of her life is forgotten by the one who made her. Thank God, because how terrifying it is for me to think of her forgotten, her name lost.

Also important to me is the hope that her body, though ashes now, is not lost forever. I also believe or try to—in a bodily resurrection. I believe that her actual body that I loved so much and cleaned and nursed and hugged and kissed, that I bathed even after she was dead because I loved it so, so much is also loved by God and will be with us again somehow, new and perfect—that I’ll look into those gorgeous eyes again. So that gives me hope.

And lastly, there’s a final more immediate resurrection that I have to believe in—that starts now—that’s almost impossible to believe because my grief is so deep. It’s the new life that I have to begin right now with my two girls and Noé with this job with Leonie done for now and a new work of grief and healing just beginning. It’s exhausting to think about. I don’t want to do it. I didn’t want to ever have to do this work—I wanted to take care of Leonie forever, but here we are. Because don’t think for a moment that even the hospital stays, the long nights, what once seemed like inconveniences are not terrible, terrible losses for me now. Don’t think that I didn’t need her just as much as she needed me—maybe even more. Don’t think for a minute that I don’t miss her every day, every minute—that every night isn’t excruciating because she was my blanket and my comfort. I miss her so much and my grief will be as long as my life. I can’t fathom right now the years and years I’m probably going to have to live without her, the way my other two little girls might just have fleeting memories of her—I can’t comprehend the death of all of my dreams about her in our future. I have to believe—please pray that I believe—that God will help us start a new life right now—one where we can’t see Leonie—one where I have to trust that she doesn’t need me anymore—because I still have moments of panic now that she’s gone—pray I can find joy again—that we can start again with some kind of new life.

Naomi Shihab Nye has a poem that I love, that I think is actually about this kind of resurrection. It says:

Before you know what kindness really is you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.

What you held in your hand,
what you counted and carefully saved, all this must go so you know
how desolate the landscape can be between the regions of kindness…

Before you know kindness as the deepest thing inside, you must know sorrow as the other deepest thing. You must wake up with sorrow.
You must speak to it till your voice

catches the thread of all sorrows and you see the size of the cloth.

Then it is only kindness that makes sense anymore,

only kindness that ties your shoes
and sends you out into the day to mail letters and

purchase bread,
only kindness that raises its head from the crowd of the world to say it is I you have been looking for, and then goes with you everywhere like a shadow or a friend.

            If we have a hard time believing in the power of Christ’s resurrection, maybe we need to look more closely at the people who wake up and tie their shoes after their baby has died. I know I look to the people who have reached out to me during this time and so often it’s people who have had their own losses—cancer patients, parents of children with special needs, people with difficult diagnoses, single mothers, doctors who have seen these things again and again, or people who have just drawn near to others who are suffering and know it--people who have seen the size of the cloth, our connection to each other—our mutual brokenness—and who have woken up to a deeper kindness, to Christlikeness, to an eternal worldview—with the hope that even the letters we mail and the food we buy, the crafts we do with our kids, the hair we wash, the messages on social media we leave, the patients we visit are eternal and blessed by God.

In our lives we carry both sorrow and hope—both are holy--are parts of the same thing. Life is made of it. We are heartbroken and dissatisfied because we know that things are not the way they are supposed to be, and so we can die in despair or rise again and get to work—a work full of hope as we see God’s beauty and grace even in the smallest things, the ugliest situations, the most devastating losses. I don’t know. I’m still trying to believe this in reality. But living with Leonie was such a clear picture of it all. Her brain was smashed, her muscles tight, her lungs scarred. But she was beautiful and blessed and already pointing me towards an eternal hope where I’ll see all of the brokenness whole, all of the tightness loosened, her lungs strong. She was already preparing me for this because she was prepared for me.