Dear Samuel,
I am twenty-two weeks pregnant with you, and we have received news that you have a major heart anomaly the doctors think is fatal. But I am starting this book for you so that some day, years from now, when you need encouragement, when you wonder as we all do just what you’re doing here, if God loves you and notices you, if He has a plan for your life . . . that you will read these signs and wonders and know YOU are chosen, annointed, a son of God.
I love you, son.
Mama

(written in the spring of 2011)

Some moments never hold weight in the real world. They float above life–or beneath–never gaining a weight that can be absorbed or tethered. They stand in our memory, perfectly detailed, from the breath I can’t hold to the salt pouring down my face. The doctor mouths. First, he has a heart condition that will require surgery. The next day, his condition is fatal. And we can discuss our options. And I am in shock, but I raise my voice at the serpent that has slithered in with her, now tickling my ear, “No, we will not discuss options.” It was easy then: my knee-jerk.

It was not easy the night he was born. I was being poisoned by the second round of magnesium in a week combined with 1200 milligrams of lithium running through my swollen, pregnant body. He didn’t handle delivery well, and from my limited view while pushing, I thought he had flat-lined. When he was born pink and mewing like a kitty-cat, all I wanted was to hold my baby. I held him for a moment, kissed his head, and gave him away to strangers to carry to the NICU.

Jack and the cardiologist came back after Sam’s first echo outside the womb. My husband shook his head. Just tell me! I yelled at them. They mouthed. It was as bad as they thought.

I laid in that delivery room for three hours before I was allowed to see my baby. I shook with need of him, craving this child whose natural place was in my arms, wondering what strangers could give him in this moment that I couldn’t. I reigned in the ever-Mama bear instinct that was kindling monstrous, vicious rage. I prayed and tried to calm down as the nurse ripped the epidural tape off my back where is my baby?.

When they finally wheeled me up to his bed, I halted. As much as I loved him, as much as I fought for him, the moment I first stood beside his bed in the NICU was the scariest of my life. His tiny body (5 lbs, 11 oz) trembled with drugs, and my touch alone was too much for him to bear. All I could remember is the way I barked at my OB, “We will not discuss options.” My heart flooded with a guilt so deep I couldn’t see above the water line. Was this the right thing? Was I being selfish? I prayed over him as best I could, not realizing until a nurse put a blanket around me that I was flashing the entire NICU. Suddenly, his oxygen saturations started to drop. Within minutes of my arrival, we were ushered out as they intubated him.

Sam spent two and a half weeks in the NICU when he was born, and guilt clung to me every minute. As I held him, prayed over him, sang to him, woke in the night to pump breast milk for him, I wondered if he would choose to be here. I wondered if all of my pro-life, pro-God, pro-morality programming had been fair to Samuel. Would he choose this life, one with routine echocardiograms, extra shots and endless pokes, surgeries and procedures? Was this all just me not wanting to bury another son?

Now he is two, sporting a zipper scar that is already fading. He loves, loves, loves shoes, especially his Toy Story cowboy boots. He loves to “coke” (cook) with Mama, play trains, and take baths with bru-bru. He speaks with a slur now that his molars are coming in. He mouths a pacifier like my Grandpa Ralph used to a handle a cigarette: like an old pro. We just enrolled him in preschool starting next fall.

I think back to the dark days, days filled with doubt and guilt and fear. All the pain and churning Jack and I have endured watching his pain stack into an impossible heap of hard. And there could be more to come. But when I look at this little boy screaming and stiffening his entire, sudsy body as he’s pulled from the bathtub every night, when I hear his “I’m awake!” every nap time and every morning, when I hold him with his blinky in my arms every time he asks, I know that those moments of black are not the moments that define his life.

His life blossoms with each passing day, and only Samuel and God know what form it will take. However much I have pushed and willed and prayed, this has never been my call. Thank God for that.

Humbly,
Sam’s Mama til the cows come home,

Taylor