Boom clap, the sound of my heart

I write this while waiting for bad news. Or good news. Or any news. Something to demarcate the space between before and after. I am certain to arrive at an “after” once the news arrives. Perhaps it is also because of my resilient cheerfulness that I am hungry for the news. Whether good or bad, I will have to be administrator of the future. Strangely enough, for that I am excited. At least there will be action instead of this interminable waiting.

Here are the facts: Teodoro is “deteriorating physically.” I use that term as a catchall phrase although I am not really sure what it means. What it means to me is that as each day passes, he finds it more and more difficult to walk. The symptoms came “like a thief in the night.” The writer in me pauses as I take note of my need to use easy phrases with which to make sense of this new thing in our lives.

In July, at his Foundation Day ceremonies, Teej danced to the song Boom Clap. I stood on the right side of the theater, my phone camera in hand, my eyes blurring from the copious tears I couldn’t help but shed. His movements were far from graceful, his lack of bodily knowledge betrayed by his every move; but — and it’s a graceful but — every time the song reached the boom clap, no one was more on time or on point with clapping than Teodoro. Here, his musicality was in full show — his sense of rhythm, in spite of all things, so part of his being a musician. Boom clap the sound of my heart I sang along. What a perfect song, I thought.

I am glad I took this video as it now serves as our “before” picture. Here, he is still erect. By September he had become noticeably not erect. In the beginning it was easy to shrug it off as just something that happened because he didn’t sleep well the night before; or simply a sign that he needed to have more exercise. Teodoro has always had issues with his body — the instrument he could not make sense of. It pained me most as his mother: how he could understand many instruments of music, even sound, but not make sense of his own body.

As a child, he found it difficult to locate his body parts. I’d sing “Head, Shoulders, Knees and Toes,” and do the actions to help him figure it out but his hands would hover over his head. One hand would touch his ear in his attempt to reach his mouth. His arms would lie tense beside his body, unable to locate the difference between knees and toes. When he was smaller it seemed incomprehensible that he could not do this simple physical task. As he grew older, the sadder I became that “simple” would never be a word in my vocabulary.

Today, as I write this on a particularly glorious day, a day when the weather is crisp and clear, his legs twist and turn, and he has found it harder and harder to control them from getting entangled. His right side stoops, creating a crazy rhythm when he walks. It is easier for him to run or even gallop, all the uneven sides less uneven when he picks up his body with speed. The sound of his footsteps betrays it all as one side is heavier than the other. Teodoro also finds it hard to locate pain and when asked if he is in pain he isn’t sure how to answer the question. He doesn’t seem tired, however, and gallops with a certain amount of joy.

Ultimately, I understand that this is not about me. It used to be a lot about me when he was an infant. On some days, it’s a lot about me. In September, I couldn’t get out of bed from sheer exhaustion from crying. It took two days to enunciate what it was that caused such grief. I was ashamed to admit it after all. I grieved over the fact that I gave Teodoro this body. I thought of all those ridiculous wars I waged when pregnant: how little weight I gained because of severe morning sickness that would last until evening; how I insisted on doing it all in spite of episodes of spotting; how I railed against bed rest, angry at how weak pregnancy made me and I’d cheat and try to be strong anyway to prove a point; how I insisted on a birth plan that would mean more than 24 hours of labor when I could have just made life easier for us all if I relented and asked for help.

All the things that make me “wrong,” the most infuriating qualities could have just harmed me or been used to harm just me. How naïve I was. I didn’t understand then that being a parent is always about your life being about someone else. Did I cause his weak body? When he was born there were certain things not quite right. His lungs were underdeveloped and as he nursed from me, his chest would rise rapidly and his lungs would wheeze. The skin over his spine had not closed accurately and he had a tiny hole at the base of his spine that was indented. The doctors commented that if it had not closed he would have surely died. His ears had extra skin, two of which fell off and one of which still remains by the side of his ear. Head, Shoulders, Knees and Toes. Surely it was all my fault.

But ultimately I understand that this path is not mine. I will not have to suffer the way he does no matter how much I suffer. He will bear the pain. He will experience the change in his body. He will endure. As his mother, part of the grief is the wanting to do it for him. Part of my humanity is the secret relief I have that I do not have to. Last week I woke up with a blinding insight: no wonder Mary was born without sin. You could not love a child born to suffer this way without an extraordinary kind of grace. What are non-Marys to do with children like ours? And there I was back to crying.

My brother comes home from the States with a copy of New York magazine. On the cover is the story of a mother convicted of trying to kill her child who has autism. That very same day a news article on Yahoo appears about a mother from Park Avenue who is accused of the same crime. My eyes skim through their stories. My eyes cannot land long enough on a detail or an insight. Skim and scan is the only way to get to the end of the narrative. It is horrifying to be able to relate to the humanity of these mothers. I know the fineness of that line between love and hate. I know that line better than any other line from any song I know. And I know many songs.

Two Sundays ago, without provocation, Teodoro hit me, his curled fist landing on my large hip. It is perhaps a rare time to be happy I have an expanse of fat around my hips. But still the pain reverberates to my waistline. He takes a swing again and his lack of coordination becomes my ally. His hand lands instead on the dining table and he winces in pain. Things begin to fly and there’s a version of me standing over this episode, second-guessing all the choices I made that led to this moment. My memory, that most damning instrument of my heart, takes me to places I have sealed. Fights in public restaurants where the shame of it all stays with me a decade later. Fights in private spaces, me screaming at the top of my lungs as I dodged his hits. On some days I would scream terrible, terrible things. On other days, I would chant the Rosary or the “Memorare,” calling on a greater force to come to me and to him. On other days I said nothing, hoping that no words would make the rage burn faster. This was a version of his mother he hated the most — the quiet one — and it would enrage him even more leaving me with the option of praying or cursing. And I would think to myself, If I could say the word, and only say the word, and we shall be healed…

I allow myself the direst of diagnoses. I am a writer, after all. In this imagined dark, dark place, I see Teodoro in a wheelchair. I cannot help but create a place for joy for us. I think to myself, if he were still and unable to hit me, maybe I’d know him more and know me better. Perhaps if his body finally stilled, I could give him a proper hug. Perhaps I could do all the wrong things right this time — honor his body in ways I did not or have not. Surely the narrative does not end with the loss of a body.

Teodoro’s mind continues to live and grow. At seven years old the doctors said his mind was of a three-year-old. When he was 10, the doctors said he almost had the mind of a four-year-old. It seemed staggering the smallness of the numbers and the snail’s pace of his progress. And this was when I perhaps learned to see the value of the smallest things and I yearned for the need to be small myself; to accomplish small things; to be grateful for small things; to be small myself; how I wanted to be like Teodoro. At two years old his favorite thing was to watch trees and that became my center, too. How little a tree needed, no matter how big it became. How much it gave to the world without asking anything in return. I knew I would not be this way without Teodoro in my life.

Our dynamic is never resolved. Every day his happiness is the fulcrum of my existence. Every day I face the urge to run away from his complexity. Every day he forces me to contend with the selfishness of my being. “Mommy, you na,” he intones again and again. “Mommy, sige na,” he invites me again and again. These days, I am too tired and beaten to say yes. I just want a moment’s peace, I rage inside. Surely I have earned it, I argue. But Teodoro won’t let me be. Won’t just let me be me. He asks of me with no agenda, no malice, no need to hurt me or even exact revenge the way other children do. He just wants it to be me. In spite our most conflicted love affair, his first words, even as he prefers his father these days, is always, always “Where’s Mommy?”

Oh, Teodoro, where is Mommy?

Mommy is out grieving somewhere hoping that things are reversible. She is hoping she could be better. She is hoping there is some court of appeals where she could beg that she take the pain instead of you. She is out searching for saints, praying to this young Blessed Chiara because she was a young girl who must know how you feel. On her most fevered grieving days, she calls upon Ritchie Fernando, because she knew him and believes he would have mercy on her. On most days, Mommy is trying to look like she can carry a conversation with anyone when all she’s really doing is chanting the “Memorare” in her mind, intoning it like some kind of magical spell, imagining the words being written on your body, the words swaddling you, thinking if Christ was made man, first infant then child, then he can spare us a miracle. She is sitting in her garden lolling the word “failure” on her tongue. She is wondering if that perhaps is the word that best describes her. She knows the world will not allow her this weakness but for a second she’s hoping the world will let her. Because she needs it too, needs to be okay with being a failure. Not for forever, but for a moment. Because then she could be weak and she is looking for the strange comfort in leaning on one’s own lack of understanding.

Because then to be weak would mean the world would allow her to make mistakes. They wouldn’t go around saying awful things like, “You’re the best mother for Teodoro!” or “Better you than me!” To be weak would mean that she was perpetually in a place of figuring things out. To be weak would mean she was creative in trying things out! Being weak would mean she was not a model of motherhood, but a real mother. It would mean she was born with sin.

As I write this, Teodoro is on the balcony, his beloved dogs around his feet. He calls to me, “Mommy, can I sit with you?” He walks towards me and my heart gets all tied up in knots, as I see him struggle with navigating the walk towards me. I resist the urge to fly to him. The doctors suggest that we keep him walking as much as we can. My memory flies to that moment when he was first diagnosed with autism. Dino and I fled to the mall to search for books on how to plan the next few years with Teodoro. I was crying the whole time. Dino propelled me forward, concentrated on the task at hand. I could barely keep myself erect from the annihilating pain of knowing life would never be the same again for us. He entered a sports store at some point, looking for something for golf. I stayed outside, angry at how absurd it is to be thinking of golf. I looked at my reflection in the glass, searching for my eyes as they watered with even more tears. I took a deep, shuddering breath to keep from fainting. I concentrated on the boom, clap of my heart, willing my heartbeat to slow down. I learned this in years of learning prayer: I conjured a safe place where I could breathe. The breath comes to me and the breath whispers, “All shall be well.” I know whose voice it is. Dino came out of the store and saw my tears and enfolded me in his arms. “It’s okay,” I told him. “We are not alone.”