Submission to Open Call: Life After Quitting Hope
By Kristina Lakes
How could my baby have a hole in her heart? She is a crazy, passionate, beautiful little four year old. She never sits down unless it is to watch Dora the Explorer on TV or to eat. Even then, she often stands beside her chair, wiggling her nonexistent little hips, dancing to an internal giddy song as she bites into an apple. A little Eve in the making.
* * *
I looked at the packet of information the hospital had sent us. Preparation for Pediatric Cardiac Surgery. “I read all the words, but I don’t really understand,” I told my husband, who I had put through physician assistant school not so long ago. At the time, I had resented the money, the sacrifices, the nights alone when he was studying. Now I was grateful for his knowledge. “Help me understand,” I pleaded. Steve looked at me with something between surprise and pity. I could tell that he didn’t really want me to know what the doctors were going to do. But he picked up a pen, grabbed a scrap piece of paper, and started drawing. He drew the four chambers of the heart, sketched in the aorta, the pulmonary artery, and the lungs, his words just echoes from high school biology. I understood more than I thought.
“Who came up with this?” I asked him, finally. “Who thought of opening up the chest, pouring acid on the heart, disconnecting arteries, and putting in patches of cow to cover up holes?”
Steve laughed. “It saves lives, Hon.”
I resented his laughter. “Her life doesn’t need saved. She’s doing fine. How can we submit her to this, when she’s healthy and going through life at 90 miles an hour? “
“But she won’t be. In a few years, she could start to have symptoms.”
“Then let’s do this in a few years. Maybe they’ll come up with something new by then. Something less invasive, something safer.”
“This is safe. I mean, it’s a big surgery, but it has less than a one percent mortality rate.”
“The catheterization had a less than one percent chance of not working too. And here we are. We are the one percent, Steve. We’re the exceptions. We’re the unlucky ones. We always have been.”
Steve sighed, exasperated with me, yet again. I was badgering him, and I knew it, but I couldn’t stop. If there was any chance that I could change his mind, I was going to do it.
I hadn’t expected to doubt the doctors so much. But I did. I doubted their intentions, their abilities, and their motives. I thought they were just trying to make a lot of money. I thought they wanted to do the surgery now so that Emma wouldn’t die before they made their bucks. I thought that they were too cavalier about it. I thought that they had caused the hole in her heart to get bigger by their catheters and tests. I didn’t believe them. I hated them. I hated them for what they were going to do to her. I hated what they were doing to my family. In my mind, the hole was not the culprit or the danger. It was the doctors. Period.
In the next few weeks, I became obsessed with my daughter’s insides, the intricate paths of her blood became highways that I traveled often . I learned about her ventricles, her blood vessels, her pressures, that hidden hole, deep in her heart, leaking blood and weakening my beautiful girl, who just a moment ago was cartwheeling past me.
* * *
On August 2, the doctors stopped her heart. They opened her chest, split her ribs open, poured acid on her heart, and disconnected her heart. They stopped the singing, the running, the handstands on the couch, the love of birthdays, stopped the rainbow song, the bubble baths, they stopped that smile, they stopped my baby girl. They stopped my heart too. They poured fear on me, they shunted my attention and fierceness, they split me in two, cleaved my ideas of right and wrong, of who should get sick and who shouldn’t, who should face death, who should be in hospitals, slicing into my sense of who I would ever be if my baby died.
* * *
My family sent gifts. A 6 inch bear. It was almost as long as her incision, I thought, as I unwrapped it. Balloons, pj’s, slippers, and a card. It wasn’t enough. My girl was on a heart –lung machine, and you sat 1000 miles away, on vacation. You didn’t call for days. You ignored us. Where were you the day before, as I lay in bed, sobbing, praying not to go through this? When I agonized for weeks about whether to wait for a few more years, wondering if her heart would last that long?
The day before the surgery, I wrote an email to my family: “To be uncharacteristically honest, I am disappointed that none of you are coming.”
My sister wrote back, “I didn’t answer right away because I had to think of how to say this. I take great exception to what you said. Suffice it to say that we would have been there if we could have. The timing just was not good. I know you didn’t choose the time, but it was not convenient. Emma will get through this, and grow up to a beautiful lady.”
I can’t express anger to them without getting anger in return. I cannot be honest without the freezing silence, condemnation, hostility, and ignoring of my anger. When I say I am mad, it reverberates through my family, shock, at the honesty of it, how could I be angry at them? They pay for my compliance. They charge ease, comfort, vacations, prettiness, space between us. They take a credit card and swipe it between us. Take this instead of me, they say. Instead of my time, instead of my presence. Take a thing, take a piece, a brittle, physical, thing, instead of wallowing, swelling, emotions. Stop talking. Stop.
But I will still say this: when my daughter lay on an operating table, getting split in two, and you were not beside me, I longed for you. I expected you. I thought any minute, you might surprise me, and come. I really thought you would be there. I expected it. I had every right to expect it. Don’t families gather for operations, life and death moments, hurt, major events, trials, crises, funerals, and birthdays, and celebrations? Aren’t families supposed to go through life together, side by side, physically, not by phone and texts and gifts. I didn’t want and I don’t care about your money. I wanted you.
And maybe it brings back that I never had you, rarely had you, missed you before. Maybe it pulls from my past. But it also separates us in the future. I won’t trust you again. I won’t invite you. I won’t expect you again.
And God, I won’t expect much from you either. I have stopped expecting my daughter to out-live me. I’ve stop expecting miracles, even asking for miracles, even wishing for miracles. I will stop wanting normal. I give in, I give up, I give. I give in to the fact that I can only pray my way through and that percentages don’t apply to me, they don’t apply to my family, and they don’t apply to you. I give in to the fact that I am equal to everyone else in this universe, and everything that can apply to any human being, can apply to me. I give in to the fact that holes are deep and hidden and although they are rare, they are leaking steadily, so I give in to being vigilant. I give in to not being able to cause anyone to care enough about my life and my babies but me. I give in to a family that is made, minute by minute, and not born. I give in to anger that is right, all the while knowing that it can’t change a thing. I give in to a notion, a hint, a whiff of who you must be that allows me to go through this and still retain shreds of a faith, but I also recognize who you aren’t. I no longer believe that you control my destiny. I KNOW that I no longer control my destiny. I believe that life is out there happening, and I just catch it and hold it and hug it while I can, praying for the strength to hug tighter and praying for more strength if I have to let it go, cartwheeling past me.
* * *
And she continues to do gymnastics, one year later, strong and healthy. She just lost her first tooth yesterday. I left a five dollar bill under her pillow. I couldn’t help it. I was raised that way.