Touch the Sky

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Look at where you are
Look at where you started
The fact that you’re alive is a miracle
Just stay alive, that would be enough

– “That Would Be Enough”, Hamilton

Scarcely a month after Cecilia was born, I texted my big sister that just because Cece isn’t Lizzy doesn’t mean that she’s any less worth dedicating my entire life to. Her response? “Exactly, sweetheart.”

Because Cecilia was born in the shadow of a brutal divorce and devastating grief, she has never known what it’s like to have a father or a sister. Because she was born with a genetic disease, she has never seen the world the way most people see it and has never demonstrated the effortless capacity to learn that Lizzy embodied every day of her life. Cecilia has been diagnosed with “gross motor delays” and “global developmental delay” in addition to her compromised sight. Her genetic disease affects one in a million worldwide, making her condition so rare, she is unlikely to ever meet someone else who shares her retinal-renal disorder.

However, as I wrote mere hours after she was diagnosed, I believe there is more than one way in which Cece will show the world that she is one in a million.

There was a time, roughly a year ago, when I believed that every day of Cecilia’s life would prove an uphill battle of endless therapies, exercises, and doctor appointments necessary to render her comparable to other children her age. There was a time when doctors and therapists agreed with this conclusion.

Despite this, Cecilia has spent this past year confounding every prognosis and surpassing every expectation. Her physical therapist states that most children she works with remain on a plateau for extended periods of time, while Cece’s progress can be measured on a steady incline. Her visual therapist constantly marvels at the visual cues Cece pursues, and we spend hours speculating on what she can and cannot see. Her doctors warned us of growth retardation, and yet Cece has gained weight and height without ceasing.

In the past weeks, Cecilia has begun to walk in her sneakers around the sidewalk, driveway, and front yard while holding my hand. She loves to open and shut doors and flip on and off light switches. She crawls to stand in her sidecar crib, then holds onto the railing and leans over like Juliet in her balcony, asking for a kiss. Then her face explodes in a dimpled grin every time she receives one. She coyly bites my nose with infinite gentleness, then cannot contain her giggles when I bite her nose in return. She wants to press all of the sound buttons in her books and has begun to clap in time to the “If You’re Happy and You Know It” song from her songbook. When we sit down to read, she reaches over to grab her glasses because she knows it’s reading time.

Her favorite game right now is to pat objects and body parts, asking to hear their names. She can point to all of her own body parts and feed herself independently. She’s developing a taste for pate and duck egg yolks with her morning sausage. Avocado, salmon, fresh lemon, and olive oil is her favorite meal. “A Million Dreams” from The Greatest Showman, “Evacuating London” from Chronicles of Narnia and “Touch the Sky” from Brave are currently her favorite songs. She throws her head back in exuberance when she swings in her bucket swing and gets down on all fours to dance and bounce to her favorite music. She hoots and hums to me on our bike rides and sleeps curled in the crook of my arm, our foreheads resting together as the crickets sing us a green and dimming lullaby.

Last weekend, we visited a farm to buy a leg of lamb for Easter brunch, and Cece heard live geese and baby chicks for the first time. She reached into the tub holding the chicks, reminding me so much of her big sister, who loved all animals. She then sat down next to a baby chick for Easter photos, petting it with shockingly gentle fingers. Last night, she found her glasses while playing, tried to put them on, then cruised calmly over to me for help putting on her glasses. She then cruised back to her bookshelf and took down her books, flipping through the pages one by one.

“She’s just exploding right now,” I said to my big sister today. “I know,” she replied, “that’s what I’ve been thinking too.” We both feared this day would never come. That Cecilia would never come close to the sheer speed at which Lizzy was capable of learning. And because the deck has been so stacked against her, it has taken Cecilia nearly two years to reach this point. But here we are. She is alive. And it is more than enough.

Last year, we planted a garden for Lizzy, scattering as many spring bulbs as possible for our little saint of the springtime. The dizzying sunlight has brought Lizzy’s garden into bloom, the bulbs shooting with inimitable strength through the wet and heavy soil, rendered even heavier by a layering of wood chips. I find myself comparing Cecilia to these crocuses, which rest silent and unobtrusive beneath the soil for months before bursting inexorably into bloom, stunning the world with their beauty.

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I think I have finally begun to accept–one month before Cecilia’s second birthday–that I will not be getting Lizzy back in Cecilia. The two are simply too different and have lived such different lives. I could even argue that I was a different mother to Lizzy than I am to Cecilia, since the person I once was died the day Lizzy died.

But if it is true that it is impossible to reclaim Lizzy within Cecilia, it is equally true that hints and dimensions of Lizzy are capable of shining through. This is nowhere more evident than in the way we love one another. Yes, Cecilia is not capable of as much as Lizzy was at the same age, but she is still my favorite person with whom I want to experience the world. I delight in her delight; her need for me feeds my need for her; when she is thriving, I glow with unspeakable hope and pride.

When Lizzy died, I believed it was impossible for me to love another child as much as I had loved Lizzy. And it is true that my love for Cecilia feels, looks, sounds, tastes, and even smells different than my love for Lizzy. But it is not a lesser love. And Cecilia is not a lesser daughter. We love as we love because of everything that we’ve lost. Because loss has taught us to prioritize love above everything else–even grief. Because grief itself has taught us that it is a type of love. . . and because loving Cecilia and missing Lizzy is also loving Lizzy. Lizzy’s presence and consequent absence in this world has deepened our understanding of love–and just perhaps–has allowed Cecilia to spread wings we all believed she was born without.

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As little girls, my sisters and I were drawn like magnets to the seesaws on the playground. We systematically tested them out, discarding the play if the seesaw was too rusted or creaky or low to the ground. We searched for that magic balance where there was enough tension, and the symmetry of weight and counterweight became exhilarating. Sometimes, the weight of the other would push one of us too high, and fear would set in, crippling the play. Sometimes, the greed for sensation would set in and one would kick the other back down with jarring abruptness. But, inevitably, there would come a time when both of us were suspended, four legs dangling in air; the seesaw was perfectly balanced, and for that split second in time, we felt like we could touch the sky.

Raising Cecilia in the wake of Lizzy’s death has been like living on the knife’s edge between life and death, spiraling in a breathless jet stream towards euphoria one moment and plunging the next into a leaden and faceless nadir of despair. For almost two years, I have felt pinioned between agony and ecstasy, unable to experience any joy with Cecilia without the misery of grief for Lizzy. Perhaps it is because I have lived this way for so long that my brain has begun to learn new ways of balancing this trajectory, but lately it seems as though the constant up-and-down plunge of joy and grief is streamlining into something more parallel, more fluid, and more weightless.

These days, it feels as though I’m balancing with one foot on each side of the seesaw, almost surfing the currents of grief and joy as they come. The risk of tipping over from one into the other is always there, and sometimes I succumb–sometimes willingly. But, very slowly, I’m learning the core strength needed to balance the weight and counterweight of joy and grief–to place my feet just so and align my arms slightly this way or that and exhale with measured care so as to not tip my balance.

It’s exhausting work, and sometimes I’m too tired to even try. But grief does not come with a pause button, and with every new morning, I’m swept back up in a current over which I’ve never had control. The waves will keep coming; Cecilia will keep growing, and my ache for Lizzy will keep deepening. But the days and moments when I can balance the seesaw are increasing. My endurance is growing. And on the days when I’m too tired to try, I force myself to remember how far we’ve come. To remember where we started. To remember that Lizzy’s life was a miracle . . . that Cecilia’s life is a miracle.

And that all these things together can touch not only the horizon of enough, but the sky itself.