Chapter 9: That Night

Soon after returning from my visit with our son my husband’s pastor came to visit. I could not understand why he did because he wasn’t my pastor and I didn’t attend his church. My guess was that he wanted to do the right thing and offer his support. All right. That was nice. Only it wasn't. He focused on why these things happen to people. And he wanted Nathan baptized a Lutheran. Both things I had severe issues with. For one, it didn’t matter “why”, now did it? It WAS. That was the simple fact of the matter and one way or another I had to get my family through this. To me that was the only issue at hand. I had a son who could die and 3 other children who would need everything I had to give them in this time of need. As for baptizing Nathan, I simply sighed and informed the pastor that my family was Catholic, wouldn't particularly care for him being baptized Lutheran, and that I didn’t personally believe that Nathan would end up in hell if he wasn’t baptized. Unbelievably this started an argument over religion right there at my bedside! I was frantic to get away from him. I had far more immediate and important things to worry about, like how on earth was I going to help my son to die? I only knew that I might have to and this weighed very heavily on me.

Before the pastor was finished preaching the phone rang. At first I thought I was saved by the bell. But I wasn’t. It was Nathan’s doctors. He was getting worse and the pediatrician wanted to discuss “heroic measures”. My parents were just walking into the room. I told the doctor that I would be right there and they hurriedly got me a wheelchair, making phone calls to the rest of the family as we left. I left instructions with the nurses on the way out that my husband’s pastor was not to be allowed back into my room. I could not imagine a more heinous creature in the face of what we were going through.

Back at Cardinal Glennon we discovered that Jeff and the kids had just left the NICU. A security guard was sent to intercept them before they left the hospital. We were made to wait outside the NICU because another family was in there with their baby. I objected strenuously and was given explanation after explanation that parents need time alone with their children and wouldn’t I want the same consideration? I told them that I damn well didn’t care, my son was dying and they were not going to keep me away from him. They finally relented and Jeff and I went in. Nathan’s doctors and my parents were there, my doctor was there, and one of the midwives he works with was also there after having asked for that particular shift on the floor. She had some training with hospice, as did my mother who was a hospice home care nurse.

The situation seemed clear to them. It wasn’t clear to me, except that everything was failing and they seemed to think that Nathan was going to die that night, if not within the hour. They wanted to take him off the machines. I, on the other hand, wanted a miracle. I wanted my son to have every chance to bounce back to us. So I asked questions to make sure. Lots of questions. I couldn’t rob him of even the slightest chance he might have to stay with us. Some of the staff got impatient. Others just waited for us to make the decision they knew we were going to make. My doctor broke down in tears and ran from the room.

Finally I understood what the rest of them already knew, that Nate was actively dying and there wasn’t anything more anybody could do for him. I did the only thing a loving mother could do. I gave the order to stop the life support and asked for my son. If he had to die, it needed to be in our arms, enveloped with love and not was not alone in that crib. Reluctantly Jeff agreed. He held Nate for a few moments and then Nate’s nurse placed him in my arms. They pulled out the breathing tube. Nate squeezed my finger. He didn’t die. He cried. Something they said he was too weak to do. They moved us into a private sitting room where we could all be together and the children came in to behold their brother. Nathan’s aunts were waiting to meet him too.

The first thing the kids said on seeing their brother was “hook him back up!” We were all so scared. Acceptance came slowly. They hadn’t been in the NICU as Nathan’s doctors and I discussed his condition and prognosis. I explained that they needed to be very strong and brave for their brother because he needed them now more than ever. My 6 year old daughter was too afraid to hold him, though we repeatedly encouraged her to. Someone from the hospital staff brought us a disposable camera. More pictures! How could they think like that at a time like this?! But I’m so glad they did. We took those pictures. And footprints to boot. We held him and loved him. And he didn’t die.

After about ½ hour I told the hospice nurse that she could let the others come in one at a time. They came and the strangest thing happened. Nathan smiled and cooed and cried and looked every one of us in the eye. My mother later said it was if he was trying to take our faces with him into eternity. There was sadness in that room, yes; but the overwhelming feeling was pure joy. Babies will do that to you and Nate was no different. He didn’t LOOK so sick there in our arms. He did everything they said a brain dead child could not do. He sucked our fingers, cried, took cat naps in our arms, and bonded.

My mother always wanted to be a hospice nurse. It was the only nursing she ever did. She loved her job, hard as it was at times. She sat there in awe of what was happening to our family. She’d never witnessed hospice like this. We got our miracle. It just wasn’t the one we wanted.

Finally most of Nathan’s aunts went home to wait for the call. My parents went to get something to eat. My sister Angie stayed with me and the children who were making plans to spend the night with me there in that room. Nathan was hanging on. Perhaps he would make it after all. The nurse came back and we bathed his head to rid it of the marks from the EEG. We changed his clothes and his diaper. They called my hospital to see what I needed in the way of drugs. I still had a heplock in for morphine and antibiotics. Plus I wasn’t eating. They put me on the sofa in that room and just as they did Patrick said “I don’t think he’s breathing anymore.”

“Let me hold him”, I said. I held him in my arms in front of me, staring into his face, willing him to live. He took one last dying breath and expired from this world. I sat there not believing he was gone. I heard wailing. Then crying. And I put him to my shoulder and wept, rocking back and forth, wanting like nothing I’ve ever wanted before to die right there along with him. My heart was broken. My sister will never forget seeing the looks on all our faces as Nathan passed over. It is the greatest sadness one will ever experience. I remember looking at the clock. Ten minutes till 11pm. I wish the old tradition of stopping the clock was still the norm. It just didn’t seem right that time should keep going.

I don’t remember the rest of the night except that Patrick and I cried for what seemed like hours in each other’s arms. I have no idea of how I got back to the hospital or how we spent the rest of the night. I wanted Nathan back so very badly. Sixteen years old and Patrick was left to spend those first hours with me. The next morning he filled in Nathan’s birth certificate.