Into the Unknown

“We have always feared Elsa’s powers were too much for this world; now, we must pray they are enough.”

– Grandfather Pabbie, Frozen 2

When I was a little girl, my father used to read me to sleep. Sometimes, I can still hear his voice, still feel his arms enfolding me while I sat on his lap, the book braced before us. Stories upon stories he read to me. My mother read them too. My parents read to me until I could read to myself, until stories became the way I heard and saw the world around me, the way I understood love and strangers and family. And darkness too. I’ve read stories my whole life to try and make sense of myself, to try and make the world literate. In the process, I’ve lived my own story, a story I never imagined I’d lived, and I never dreamed of living in my worst nightmare.

That nightmare came alive for me last week.

For months, I have run and hidden from the memory of Lizzy gasping for breath and pleading for water beside me on my last night with her. But when Cecilia woke one Wednesday evening from her nap with a high fever, and I lay beside her tiny body quivering that night with thirst and heat, I could not run from my memories. The hours raged on as I drifted in and out of half-dreams where I was running–running . . . only to wake and wrap my hand around Cecilia’s foot or chest or hand, nearly burning to my touch. Every part of her was burning, burning like a dragon was consuming her from the inside out, like her little ribs could not contain the fire, like it would hollow her to the bone. Cecilia burned and Lizzy gasped for breath and both pleaded “Mama, Mama,” and I knew I would never be enough to quench the flames.

Cecilia threw up at 5 am, emptying her little self of the water I had thought she had consumed throughout the night. More liquid than I had thought her little stomach could hold poured out across my chest, covering half of the bed. I could feel Lizzy convulsing in my arms, vomiting all the water I had given her throughout that hideous night, splattering my chest, our clothes, the floor. Dawn streaked through our skylight, shading Lizzy’s skin more blue than it already was, and she cried and gasped for breath, for water, begging, “Wa-ter, wa-ter,” even as she threw it up.

“Take her in,” the pediatrician said. Cecilia’s pediatrician, that is, not Lizzy’s. Lizzy’s pediatrician suggested I bring her into the office later that day. Knowing my history, Cecilia’s pediatrician told me to go straight to the emergency room at Children’s Hospital.

The ER doctors heard me out. With compassion, I think. I could see them struggling to refrain from telling me I was overreacting. How do you overreact when you’ve just lived through your last night with your dead first child, only with your blind and sick second child taking her place? How do you overreact when your sick second child has an underlying kidney disease with more unknown factors than all the specialists together know how to articulate?

We spent hours at Children’s Hospital, although I was granted the small mercy of spending it in the emergency department rather than the PICU where Lizzy had died nearly two years before. They ran every test on Cecilia that they could think of, clearly only to put my mind at ease. Cecilia, exhausted and febrile, screamed like she was being murdered as they wrapped blood pressure cuffs on her arm, taped an oxygen monitor to her big toe, and stuck a long swab as deep into her nose as they could reach. Fighting back tears, I rocked and swung and sang to her, calming her down in between tests, only to have her accelerate at lightning-speed into pure panic the moment strange voices began to speak and strange hands performed their rough necessities.

They scraped and bruised her vagina as they tried to clean her urethra and then failed to attach a catheter. They spurted blood as they attached the IV and withdrew vial after vial while Cecilia’s face turned purple with fear and pain. They made indifferent clucking noises communicating an empathy they didn’t feel as she screamed in terror with her arms restrained above her head and naked chest for the x-ray. Then they kept her in that suspended state of terror for endless minutes as they failed and failed again to properly adjust the x-ray machine.

Cecilia’s fever broke around noon. They sent us home around 2 pm, after her labs had come back clean and her flu and Covid tests negative. Two days later, Cecilia woke up without a fever but with a rash covering her chest, neck, and thighs. The next day, her pediatrician confirmed a case of roseola.

Because we are human, we can only function with the information we have in the present moment. I’m not sure what to do with the reality that I put Cecilia through the trauma and torment of an emergency room visit when she didn’t need it, but didn’t take Lizzy in until I felt like I had no other option. I don’t know what to do with the fact that I don’t trust doctors or nurses or specialists, and yet I have to work with them to manage Cecilia’s disease for the foreseeable future.

Fiada. I named this blog “Fiat in Fiada” because that is simultaneously the most important thing that God asks of us and also the thing I resent Him most for asking. How do we say “yes” and surrender to the unknown when that unknown can result in the wrong choice or even the death of a toddler? I had no way of knowing that Lizzy was being eaten from the inside out by a blood infection until it was too late. I had no way of knowing that Cecilia was only suffering from a mild childhood illness, and the hospital employees that day would be rough and incompetent. Are we doomed as parents to fail our children–no matter what we choose? How does one cope with the monumental and crippling responsibility of holding their little lives in our hands? How do we accept the indescribable burden that we must say “yes” not only for ourselves, but for them, and pray that one day we can teach them what it means to say “yes” for themselves?

I have long known that my greatest weakness as a sinner is my reluctance to surrender. To be like a child when you don’t know what you are saying “yes” to. To be like Mary at the moment of the Annunciation: the perfect creature. To say “yes” to the terrifying possibility of the unknown and trust that God is going to carry you safely through it. To surrender control when control is all you feel you really have.

But that’s just the thing, you see. Control is an illusion. It’s probably the most powerful and perfect illusion most of us have ever encountered because its axis turns on self-focus, self-priority: self-reliance. And self-reliance is a quality that is highly prized in our culture, often for good reason. There are times when it is absolutely true that we are the only things in life we can control. Our free will is the only thing that truly belongs to us, so it makes sense that we rebel when we’re asked to give up that free will to a force we can’t see or touch or measure. Who wants to give up the only thing that gives us any kind of power at all? Who wants to believe that surrender can carry us through the brokenness of the world to a place where beauty, light, and life can grow out that brokenness?

Sometimes, I feel like surrender is just giving up. Becoming a victim. As I walked into the doors of Children’s Hospital last week, I could not help thinking, “Well, when she dies, at least it will be their fault.” But surrendering Cecilia to their care did not make her better or make me feel less culpable; rather, it traumatized and exhausted her when she was already compromised by illness. It actually victimized her, and I suspect that this is because taking Cecilia to the hospital was not a true surrender.

That’s the thing, really. The thing that is so hard to understand about Catholicism. For Catholics, the relationship between suffering and surrender is ineffable; and yet, our whole faith is based on it. You may as well consider suffering the vertical pillar of the cross and surrender the pillar to which Christ’s wrists were nailed. Our entire faith spins on the axis of the cross: on the connection between suffering and surrender. Suffering and surrender in the face of fiada: the unknown. This is what it is to be a Christian; this and nothing less is asked of us.

And this is that which, in my heart of hearts, I fear is too much to ask.

Most of the time, I am a poor example of a Catholic. I am a sinner. I am weak and afraid and struggling. I am proud and grasping and despairing. I make the wrong decisions as a woman and as a mother. I fail no matter what I attempt or how hard I try.

Most of the time, this is what I see when I look in the mirror. But sometimes, just sometimes, I look in that same mirror and see reflected back at me the mother of a saint. And I hear my father’s voice reading me bedtime stories and stop and remember that I, too, am only in the middle of my story–a story which is not over, and in which I cannot skip to the ending to find out what happens. In these moments, my reflection shifts, and I see a woman who is struggling, yes, but strengthening in that struggle. Failing, yes, but standing up again to try harder. And grasping for control–endlessly–but startled from that grasping by moments of such beauty that there is no possible response but surrender.

Cecilia’s appetite returned a few days ago, and her energy levels have exploded. She’s unstoppable in her explorations and exercises, and her laughs, chirps, and smiles have provided a lovely soundtrack to recent days. She’s getting taller and gaining weight, and her pretty brown hair is growing longer. In the mornings, she cups my cheek with one hand and whispers some unintelligible baby burble. In the afternoons, she drinks her milk then rolls to sit up and gently hand me her bottle with a grin splitting her face. In the evenings, she cradles books in her lap and anchors them with her toes, flipping through pages she can’t read with unimaginably gentle fingers.

And I sit her in my lap and read to her as my father read to me. I read her stories so that she can understand her life one day, understand what it is to love and to give and to forgive. I read to her because she is blind and words can paint a picture for her in colors I can never understand. I read to her because her big sister is a saint and has already lived the greatest story the world has ever heard. I read to her so that she can one day understand words like “saint” and “resurrection” and “fiat”–so that one day she can understand why one of her middle names is Amaris, Hebrew for “God-given.”

I read to my living daughter knowing that one day she will experience what it is to fall in love. So that when the time comes, I can attempt to explain to her why love puts us all on that axis of the cross between surrender and suffering. So that I can one day justify the words, “I thought I knew what love was until your sister was born.” And so that I can one day tell her my story: how I died the day Lizzy died and found a way to live again when she was born. How my understanding of love has deepened like an ocean and sharpened like a blade, until sometimes I feel myself simultaneously pinioned upon it and drowning within it, swallowed and sundering until I have lost sense of everything that was once “me.”

There was a moment in the emergency room last week when I held Cecilia tightly to my chest, pacing in a frantic and desperate attempt to soothe her after they had taken her blood, and I whispered over and over to her heated neck and sweat-streaked forehead, “You did so well, so well, my love. Mommy is so proud of you, so proud. . .” And my fevered and frightened little angel pulled back in my arms with an IV bandaged to her hand and began to clap, recognizing the word “proud.”

“Yay for Cece,” I swallowed, a sob breaking my voice, and clapped one-handed and awkward with her, feeling like another breath might shatter me entirely.

I am in love, you see. In love with Cecilia, not because she replaced Lizzy or gave me a reason to live again. I’m in love with her because she’s brave without trying and beautiful without knowing and because of how effortlessly she loves when she has already faced so much suffering. I’m living the greatest love story I’ve ever read, and there are days when the love just grows stronger and the story only gets better, regardless of the fact that I don’t know what’s coming next. There are demons and dragons in our future: dialysis, transplant, and blindness–and I have no way of knowing either of us are going to make it out of that fight alive.

I think I’m finally getting that I’m not supposed to know. That the point is not how long we live or when we die, but how much we love in between now and then. The point is that Lizzy taught me what love really was and really meant, and that loving Cecilia may very well be the most important thing I ever do. The point is that I’m living the greatest love story of my life, and every minute–every second–is an opportunity to learn how to love her better. The point is that both my daughters, in heaven and on earth, together have the power to turn their sinner of a mother into a saint.

And that it is possible that my story is only just beginning.