The likelihood of her surviving to "viability" (23 weeks gestation) was extremely small. The likelihood of her surviving past two weeks, less likely. The chance of a normal life, without ventilators, severe brain damage, and with the ability to speak, think and move normally, smaller still.
We decided to name her Aine, the Irish spelling for Anya, a name meaning "heavenly light." It was a deeply significant name, a symbol of her source and of where she would go, the light of the world that the darkness would not overcome. We named her on a day of bleak, cloudy darkness, when the sky was filled with clouds that seemed to streak past my hospital window carrying meaning, but not the meaning I wanted. Not hope. It was a clunky, unphonetic name, not one we would have burdened a child who would grow into an adult with. Not a name we would have given to a child who would be able to respond when her name was called for attendance. Not a name for a job resume, or a dance recital program, or a birthday card, or the top of a book report. It was a name for a tombstone, a death certificate, a name to hide away in our hearts when her lungs failed and her brain stopped, but her little memory stayed like an aching wisp in my chest and behind my eyes. It did not feel like hope, this naming. It felt like trying our very best to weave the pain into the most beautiful form we could. Aine, heavenly light, abstract, ethereal, spiritual, otherworldly, unreal.
* * *
In our sane moments, we dared not pray for her life. In our wild moments, we begged for miracles like little children. In our wild moments, our hearts gave us no other choice.
* * *
At church, a week before Easter, she grabbed her copy of the bulletin, flipped past the song lyrics, and found the sheet with blank spaces to list thank offerings, prayer requests and new member information. Her seven year old hands rifled recklessly through my purse, unearthing a pen. I let her use it to write the three things for which she was thankful. I looked away. I felt her pull on my shirt. "Mom, look!" On her sheet she had listed the usual things children are thankful for. Beneath them, in the prayer request column, usually reserved for the ill, the suffering, the grieving, was her name, printed in large, proud letters: Aine.
I started a bit. I had been raised Catholic. Prayer for me is mostly a private affair, or something very formal. The sharing of that intimacy in the form of a prayer request seems like a violation, an imposition. But Jesus said "let the little children come to me," and far be it from me to tell the child "no."
"Do you know what that's for, Aine?" I asked.
"Yes! It's for everybody to pray for me."
"And what would you like them to pray for?"
"For me, and for love," she said earnestly. And then, after a pause, "And that all the cute kitties in my life will live for ever and ever."
While I cannot possibly bring myself to have the earnest hope that requests prayer from strangers, my lovely daughter will ask every single person in the church to pray for the eternal life of all of the cats in her life. How could I say "no" to that? And so after scribbling a quick note on her prayer request sheet to reassure the pastoral staff that my beloved child was not in failing health or dire need, but merely wanted prayer for the kitties and for love, I let her place it on the altar with the rest, and promptly forgot all about it.
* * *
When you know there is little hope, you have to protect yourself somehow. The baby needed my body's stability, which relied on my mental and emotional endurance. I held my body still for her. My heart still. I died to everything around me that meant anything. I knew that loving her would kill me. And so I would not let myself love her as a person in the future. I would not imagine her as an adult, or even as a child or toddler. I imagined her as spirit, as an idea, as a precious, but vague being, as a symbol of something larger than I could comprehend, something that might give all of this meaning. Her name was Aine. Heavenly light. A name from a mother who could never hope to see her grow and thrive in this world.
* * *
Her name reminds me of my hopelessness. Of my inability to envision life for my child. Her name reminds me of the feelings of depression and sorrow that I have yet to shake. My child's name is a legacy of what little faith I had in her strength and survival. I have given her a name that wasn't meant for this world. I named her in my grieving, before I had a right to grieve, to name, to give up. It is a beautiful name, but it is a symbol of my pessimism. Meanwhile, she carries a resilience born of being told "no" from the very beginning. She is earnest, optimistic, hopeful, open, running toward hurt and pain in spite of it all, hoping to transform it with her abundant love.
The child who would never walk dances. The child who would never breathe, wails.
I am everything she is not. Her name reminds me of this.
* * *
On Easter, we dressed up and went to church as a family. She writhed in her seat, constantly tugging on my dress, until I began to half ignore her, smiling passively and making vague, unthinking comments in her direction.
Her tugging became more insistent. "Look, Mom!" She pulled so hard on me that I was forced to turn around and look down. She was pointing hard at the prayer request portion of the bulletin, at the list of names we would read aloud before communion, the list of suffering, grieving, sick, struggling people. In the midst of the names, I saw it: "Aine."
She was giddy with excitement and nerves. "Are they going to pray for me? Are they going to actually say my name?" she asked, anxiously, smiling and rocking and gazing at me with her small eyes wide behind her dirty, crooked glasses.
"I guess so."
"Are they going to say it right?"
My heart dropped. Once again, my lack of hope had let her down. "Probably not, baby. They will probably say it like "rain," only without the "R," because that might be what it looks like to them, sweetie. But that's okay, right?"
She nodded, reluctantly. Her face fell. She is used to this, but she doesn't like it. "But why can't they just say it right? Can we tell them? Will God know it's me?"
"We can't tell them, love. But it will be okay. They'll still be praying for you."
* * *
When she was small and frail, inside of my failing body, so many people insisted on praying for me. They didn't ask, and I didn't request it. They just prayed. They insisted that I join them. They insisted that if I prayed hard enough, God would save my baby. I hated them for that. What about the people who pray with everything in them, with the same anguish I had prayed, shrieking and moaning at the top of my stairs when the bleeding started, and I knew I would lose her? The people who fervently, from the depths of everything they were, screamed and wailed, "God, please save my baby, you have to save my baby," and who lost their babies all the same? I could not believe that God was so easily manipulated, like a magical totem. More importantly, I could not let myself hope that God would create some special miracle, just for me, when so many others suffered. Above all, I could not let God let me down. I was without prayer and without hope, aside from, "Let it be done to me according to your will," and "Let some beauty, some light, come from all this darkness."
* * *
As the Easter service moved nearer and nearer to the prayer segment, she wriggled more and more, nervously fingering her name on the program. My hopeful little child. I reminded her again and again that her name would probably be mispronounced. I didn't want her to be disappointed. I, too, was nervous. I felt guilty, letting her impose herself on the prayer life of a hundred-odd acquaintances and strangers, I, who could not even let people pray for her in the hour of her direst need. I, her mother without hope.
The pastor stood up and led the congregation through the next portion of the service. She introduced the prayer section. Then she paused "Before we begin, I wanted to point out that there is one name that might be a little hard to pronounce. It's A-I-N-E. It's pronounced Ahn-yuh."
My little Aine waved her hand in the air, smiling shyly and the surrounding churchgoers, who I am sure were wondering what horrific malady she was suffering from.
* * *
The prayer begins. We read the names out loud, one at time. Normal names. Names that everyone can pronounce. She jumps from foot to foot, nervously, still grinning. And then I hear it, even as I am saying it: "Aine." They say it just right. Her face is glowing. I have allowed her the prayers I had feared for so long. My heart overflows.
* * *
It is a strange thing to carry hope inside you. Hope that feels like desolation, still, and dark, and quiet, buried under realism, and reason, and suffering. Hope that isn't a running toward, but a holding still. It feels like sorrow. It feels like pain and an awakening to the reality that we are but dust.
It is a strange thing to see this hope bear fruit. To watch it enter the world as a child, loud and strong, against all odds. It is not triumphant, but terrifying and confusing, to let go of a vision of death, the ghost you thought you had already met and let fly. To realize that instead, there is a person, wild and reckless, full of a hope that looks like what you thought hope should look like. Smiles, and courage.
It is a strange thing to see the other side of hope. To realize that it must have been there all along as something wise and mature, dark and inextricably rooted in suffering and joy, death and life.
It is hard to release myself from the guilt I feel for naming a child the name of an angel, the name of a piercing, ethereal ray. It is hard, but now not quite impossible, to see the shard of hope that must have been there all along, without which I could not have carried, heavy-hearted, this precious life inside my weak frame, without which I would not have been still and wrapped her in my care.
All along it was there, silent and deep. And without it, she would not be here, this wiggling, smiling child, all limbs and energy, running toward love and suffering with all of her being, tugging on my sleeve, saying, "Mom, did you hear? They said my name!"
Aine Celeste.
Born of hope.
My little shard of heavenly light.
