part two: all we need to know of hell

I came home from the hospital unable to sit or walk without pain. I was taking two Percocet pills every four hours. My memories of those first days are, at best, fuzzy. I know that we took my son to the pediatrician for his check-up and found out that he had moderately severe jaundice. The doctor prescribed an at-home contraption called a "Biliblanket", it was like an ultraviolet heating pad that we wrapped the baby in. I hated it. It scared me.

Less than twenty-four hours after he was first wrapped in the electric thing, I changed my son's diaper. It was full of blood. Wait, not blood. Surely not blood. It just looked like blood. Maybe. I called the doctor. He assured me everything was fine, that babies just look like they are peeing blood sometimes because there are some sort of crystals in their urine. I was slightly hysterical. The doctor agreed to see us late that afternoon.

He looked my son over and said the baby was fine. I was unconvinced. He assured me that I probably only saw those crystals, or there was some bleeding from the circumcision - external bleeding if anything. I asked him to please check and see. They attached a little plastic baggie thing to my son's penis and I nursed him in the office and waited for him to pee. The bag was full of blood. The doctor took one look. "Oh my God", he said. "That's blood".

We were sent directly to the hospital. I was told not to go home, not even for a bag of clothes. They had no idea why my baby was peeing blood. He was obviously bleeding internally, but nobody knew why or where. They sent us downstairs to run tests. I rode in a wheelchair, with my son in my arms. In the nuclear medicine room, they covered me in an iron apron and laid my six pound son, naked, on the table. The technician was kind enough to tell me to close my eyes. When I opened them, my son had a needle and I.V sticking out of his forehead. The nurse explained that this was the easiest vein to tap into on a newborn, but it was brutal to watch a needle be inserted into a baby's face.

Through this I.V. they pumped some sort of radioactive dye into my son. On the monitor, we watched his insides start glowing as the medicine circulated through his system.

When the results came in, he was placed in the Pediatric Intensive Care Unit. He had Renal Vein Thrombosis, a blood clot blocking the vein leading to one of his kidneys. That kidney was getting no blood flow at all. It was dying. The clot was on the outside of the vein, which meant that it could break off at any time and travel to my son's heart, brain, or lungs. If this happened, Arden would die.

Renal Vein Thrombosis is extremely rare in infants. The pediatric specialists had never treated a child with my son's condition. Only a few doctors in the nation had any experience with a blood clot like my son's. As a result, there was no real consensus as to how to treat it. Surgery was way too risky. The best therapy seemed to be to administer the same blood thinner that adult's get when they have heart attacks. This therapy came with a huge risk, it could make the blood too thin. My son's brain could begin to hemorrage. Still, it was the best they could do. They would be very conservative, and give him the smallest possible doses. They needed my permission. Okay, I said. Yes.

For five days, they slowly increased the dosage, but there was no change in the size of the clot. The doctors me with me. They wanted to put an I.V into my son's thigh, so that the medicine was going straight to the clot. They wanted permission to jump from a conservative dosage to the highest dosage that had ever been given to a child my son's size. This would either heal him or kill him. It was the last resort. They sat down in the PICU waiting room and told me that I had to give them permission to increase the dosage.

I wanted to scream that they did not have my permission. I wanted them just to cut the clot out or something. I wanted everything to be okay. I wanted to go home. I wanted to wake up. I wanted to disappear. I wanted be the one with needles in my arms and legs and forehead. I wanted to fall asleep forever.

I gave them permission.

The next day, the blood clot had dissolved. A week later, we took Arden home.

Those are the facts about what happened.

In the beginning, I was aware that there was a schism between what I was thinking and feeling and what I was supposed to be thinking and feeling. For example, when the chaplain would come by to visit and pray with us, I thought that I hated her. I wanted her to go away. I wanted to tell her not to ever come back again. Unfortunately, my husband and father were both ministers (or ministers-to-be) and they seemed very appreciative of the chaplain visits. The minister from our church and people from my husband's seminary would visit. They always wanted to pray too.

I had an overpowering desire to tell them to fuck off. Or hit them. Instead, I stood in little circles and held hands and while everybody prayed, I felt my insides fill with rage like poison. I imagined that if you had placed me on the cold table in the nuclear medicine room and turned the x-ray on me, you could have seem it, glowing and greenish in my veins.

During the weeks I had been on bed rest, I spent time reading parenting magazines and books. Confined to the couch, I fulfilled my primal pre-birth "nesting" instinct by pre-ordering baby announcements. I had picked an announcement with a pastel illustration of Noah's ark, post-flood. The animals were happily disembarking, the sun was glowing, and a rainbow filled the sky. "God's Perfect Gift of Love", they said. I thought they were sweet. While my son was in PICU, the announcements arrived and my mother delivered them to me in the hospital. I could address them. It would give me something to do. I looked at the announcements and wanted to vomit. They were too sweet. They were all warm and cuddly and soft. I thought, if I mailed them, my son might be dead before they even arrived. "God's Perfect Gift Of Love" - a dead baby. What would I do then? Send a follow-up death announcement. "Oops. God Lied With That "Gift of Love Crap'. (And by the way, don't say you're praying for us because it makes me want to kill you)".

I knew that I ought to be praying for my son. I ought to be weeping and crying. I should fast or gnash my teeth. I should get on my knees and beg God for a miracle. I also ought to be spending every minute by my baby's side. If I were given a quiz about being a good mother, and there was a question that asked what a good mother would do if her baby was in intensive care - I would answer either a) never leave his side or b) never stop praying for his healing. I did c) nothing. I did not want to sit near my son. I did not want to be in the intensive care room with its cloud painted walls and quiet. I really did not want to pray. I knew I should, but, after all, David spent all his time begging God to heal his baby and it didn't do any good. If there even was a God, and I was not so sure anymore that there was, I honestly had nothing to say to Him.

At one point, I remember going home to get a change of clothes. Everyone else was at the hospital. I walked into my son's empty room, sat in the rocking chair, and started screaming at God. I was scared. I was scared of losing my son, but I was also scared of losing God. I had never felt the complete absence of God that I felt at that moment. I remember having a very clear thought that I was standing on the edge of Hell. "I'm looking at the inside of Hell", I thought. I know what it looks like now.

This is the point when I dared God to speak. I opened my Bible and gave him one chance to be real. The page I opened to was Isaiah 66 11-13. I knew then, that I had not lost God.

In the days and weeks that followed, I would not lose my son. But that year, I almost lost myself. The paranoia that began with pregnancy deepened and was combined with a frightening detachment during the weeks we spent in the hospital. I began to split in half. I kept the dark part as hidden as I could.

Weeks after we came home, I still had not sent out the birth announcements. It literally turned my stomach to look at them. They were hateful, lying little things, with their happy elephants and giraffes disembarking a toy-like ark in the sunshine. Now, I knew the truth. After forty days and nights in the storm, the animals would not have come off the boat all watercolor soft and sweet. They would have looked like hell.