I felt excited when my oldest son, Hendrix, was losing his first top tooth—more so than when he lost his first bottom tooth. It seemed like such a major milestone and I wanted to witness him migrate over the plains of this infrequent terrain. I urged him to wiggle it around with his tongue throughout the day to ensure a quicker release from the gums. When it was mostly ready to come out, Hendrix allowed me to pull it for him (after some subtle petitioning on my part).
When I found out I was pregnant with my third child, my second son Avi had already lost both center bottom teeth and his front top left tooth was beginning to lose stability. Pregnant, while teeth were dropping out the mouths of my already elementary aged sons. My husband and I didn't plan to have a six-year gap between our two youngest but we did plan to have a third baby.
The four of us went to my twenty-week ultrasound appointment together because finding out if the baby was a girl or a boy "affects everyone" as the kids reminded us while ushering us towards the car. Imagine an early-elementary-school child attorney team carrying briefcases and checking their watches to ensure they would make it to their court hearing on time.
What began as all business and a placement of bets to see what the sex would be, became giggles and sibling adoration as our baby danced on the screen and flexed her muscles for her brothers. Yes, her. We would be having a baby girl. The boys jumped and hollered, "I knew it, I knew it!"
The ultrasound technician spent a lot of time analyzing the baby's body particularly the brain and the heart before she stepped out of the room for a moment. When the tech came back into the room she brought a doctor with her who also wanted to view our baby's organs. The dimmed room was now very dim, dark in fact, a cave. Only two light sources remained; to my left, a rectangular glow projected onto the round faces of my children who now sat hushed together in a corner chair, hovering over a cell phone screen. The other subtle glow emanated from the screen on the wall where our baby once performed. The only thing in view now was a gray mass with holes in it, which was apparently, our daughter's heart. A curious dialect escaped the doctor's mouth and echoed from the nooks in the damp walls where I can only assume the bats hung.
"It looks like your baby might have Down syndrome. It looks like your baby has some heart defects. It looks like your baby might not live after she is born. Amniocentesis. Specialist. Echogram. Surgery. Cardiologist. Termination."
We were given a choice to abort our child on the spot but decided to wait because we didn't have enough solid information yet in regard to what her body would be capable of, except for the one thing we witnessed: she could dance.
A week later the results of the genetic testing from the amniocentesis I had during the ultrasound confirmed that our daughter did, in fact, have Down syndrome. That was not a deal breaker for us. After another viewing of our daughter's heart, the pediatric cardiologists sat with my husband and me for three hours discussing the ailments of her muscular organ, using flip charts containing flawed-heart diagrams.
Coarctation of the aorta, Atrioventricular Septal Defect…what words were these? Every few minutes, cardiology jargon mutated into generic permeating hums which made it difficult for me to remain present in my own body. Where was I? Another cave? No. This time sound waves didn't simply echo, they swelled within my auditory canal like actual waves from the sea, breaking over my ears. I was bobbing in an ocean, alternating between being above the water's surface to sinking below it.
We learned that surgery had been proven to repair the heart defects in question for many babies who had come before our baby, so perhaps this challenge would not be a deal breaker either. In the case of our daughter's heart, though, its valvular failings produced an unbalanced heart in development, making the possibility of successful surgery debatable. We begged the specialists for numbers—percentages that would help us understand how likely it would be for our daughter to qualify for the surgeries she would need to save her life. They told us that, speaking in percentages, it was a 50-50 chance. This or that. Yes or no. They could not confidently lean one way or the other until the surgeons could see her "living heart," functioning on its own outside the protection of my womb. We decided to name her Liberty and we hoped her heart would qualify for surgery.
At home again my husband drew a rudimentary diagram of Liberty's heart as an aid to help us explain to the kids, in a simplified way, what was going on inside of their sister's body and why she might not live as long as we expected. After all, her existence affected all of us, in spite of its length. Following the ten-minute explanation, there was not much else to say in words so the four of us sat curled up on the couch looking at each other until Avi blurted out in desperation, "I just really wanted a baby sister!"
"I know, Avi," I consoled. Then, in what I believe was his effort to help Avi cope, Hendrix shared a technique he had been using to maintain composure, "I just like to think of things that don't feel like the worst things." For additional support, he then suggested that a viewing of America's Funniest Home Videos might do us all some good. We told him that we were not ready to laugh yet and that it was okay to feel uncomfortable feelings sometimes. Still, we had been swimming in the deep for a while and we needed to come ashore—or at least to more shallow waters—so we compromised on a game of Hungry, Hungry Hippos.
A couple days later Avi approached me holding a clipboard with a single blank paper attached, "I'm the doctor, Mommy, and you're sick."
"Okay," I played along, "do you know what is wrong with me?"
"It's your heart," he responded compassionately. To help me comprehend my ailments he sat next to me with his clipboard and drew a picture of an unbalanced anatomical heart pointing out the pinched portion of the aorta and the holes in the heart's four chambers.
"Thank you for explaining that to me," I responded, not sure what else to say, "Is there anything I can do?"
"Well you may qualify for surgery but for now medicine will help you."
"Thank you, doctor," I said smiling, accepting a pantomimed bottle of pills. Internally I hated myself. The cardiologists told me that there was nothing I did or could have done to either cause or prevent Liberty's heart problems and, as a baby-carrier, I mostly accepted that truth. As a mother, though, to my healthy-hearted children, didn't I have a responsibility to protect them from this type of trauma? I was failing from every angle in respect to sheltering my kids from the pains in the world. I was either forcing my children to agonize precipitously or they would be forced to grieve the death of their sister.
Months continued to pass and one week, out of the blue, Avi showed me his top tooth again, it was much looser than when I had examined it a few months back. I telepathically pleaded with the tooth, "You're a tooth and your one job is to stay in my child's mouth to help him chew his food! Why are you punishing me? How can you abandon my son—abandon me—in our time of need? Please, he's just a little kid." Tooth didn't give a shit, so I didn't encourage its removal. At one point I forbade Avi from even touching it, but his giddiness got the best of him. He wanted to be on the other side—he wanted to be a big kid working his way to big-kid teeth. The plot in Avi's mouth that should have held a whole and stable tooth now held a lopsided and dangling one. Something was familiar about this wobbly, calcified tissue. I thought about the heart Avi drew weeks earlier; the most perfect defected-heart-drawing of all time. I felt in my gut that I owed Avi my contribution to his tooth's departure. I gave the stubborn side of the incisor a stab with my finger, which loosened it from the gum bed even more. Then, with the grip of a folded paper towel and a slight downward tug, Avi pulled it right out.
His eyes enlarged with delight in the split second he felt the divide and that was the moment, a rare one in parenthood territory when the thing you are holding onto so firmly somehow escapes your grasp but instead of leaving you empty, you receive a fullness of joy. I looked at the gap in Avi's mouth where a beloved landmark once stood and I knew more than ever that Liberty might actually die but at the same time I felt a surge of relief because I also knew that, for now, she was living and in that moment nothing was scary and everything was perfect.