Steve's final day

Saturday night Steve wasn't feeling well, but he was certainly improved over Saturday afternoon.

When we woke at 5:30 a.m. Sunday, his congestion was much, much worse. His urine, which the day before looked like the perfect color, was suddenly clotted and brown. His throat was burning. His mouth and tongue were swollen. He felt miserable all over.

I spoke with the triage hospice nurse, who sent the on-call nurse to check on him.

When R, a nurse we really love, arrived, I knew from the look on her face that we were in trouble.

After I gave her a list of symptoms, she evaluated him and took me to the dining room to visit.

She explained that his body was shutting down. She thought he might have, at the most, seven days left.

A crisis plan was put in place immediately. We started liquid drugs for comfort and to ease breathing. Steve would require 24-hour nursing care.

All this time, Steve's breathing was increasingly difficult. The noises were terrifying.

Cooper and Katie were across the street with the Dubes for most of this activity. Our friend Gretchen was here. I called Jim and Betty (who called Uncle Jim), my sister Melane, Aunt Ami, Will, Julie, Liz, and Pastor Andy.

Susan, a friend from church, had already planned to serve communion at home. She, her husband and Sharon H. arrived for an abbreviated service.

The three from church, plus Jim, Betty and I surrounded Steve's bed. We sang and prayed and received communion. Susan gently put a few bread crumbs on Steve's tongue. She sprinkled white grape juice on his lips.

Cooper and Katie left to play at the Kniering house, giving us more time to take care of Steve and time for me to plan how to discuss the rapid changes with them.

We continued to give Steve morphine, which was helping with his breathing and agitation. He tried desperately to communicate, first trying to talk. I strained to understand him but couldn't. He tried to type but couldn't find the letters. Melane wrote the alphabet, and he pointed to letters to spell.

He said "I love you" and "thank you." I held his beautiful face in my hands and told him how very much I loved him and how so very many people loved him and that God loved him and that he was the perfect person for me.

Around the time the second nurse reported for duty at 2:30 p.m., he was starting to drift into a sleep-like state.

R, the first nurse, returned and told me that his symptoms were progressing much more rapidly than she had expected. We might have 24 or 48 hours left.

Cooper and Katie came home, and we waited for the hospice's music therapist and social worker to arrive. Pastor Andy was here, too.

I sat with our children on the sofa and told them that Daddy was very, very sick and that he was going to die soon.

Cooper cried out and bolted for his room.

Katie said, "I don't know why he's so sad. When Daddy dies, he'll still be in our hearts."

She asked, as she often does, what it looks like when you die. When I felt comfortable that she had the answers she needed, I found Cooper in his room.

The music therapist and Andy were with him. They had explained to him why I told him the news.

Cooper told me that he wanted to run away or be locked in a closet.

Before Pastor Andy left, we all gathered in the bedroom to hold hands and pray with Steve. Cooper was on Steve's left side. As Andy spoke aloud, Cooper bent over and sobbed. When we finished, he hid under my covers for a while.

Somewhere along the way I lost count of how many people came in our doors that afternoon and night.

Melane and Greg and Jim and Betty hurried over. Will arrived. Uncle Jim came in from Houston. Gretchen delayed her outgoing flight to Los Angeles. Ami, Sasha and Tara drove in from Austin. Melissa flew in from San Antonio. Walter and Jeannie appeared. Jessi arrived. Neighbors and friends streamed in and out. Food and drinks were delivered. We moved more chairs into the bedroom.

Steve couldn't talk back to us and his eyes were closed, but I just know he heard the laughter that filled the room all night long.

We were all devastated, of course, and there were many tears, but you just can't help but tell funny stories when you're talking about Steve.

At some point during the afternoon, I talked with Dr. M. She praised Steve's courage and will to live. She praised my care. She cried with me. She told me to hold his hand and deliver him to the angels.

I was snuggled next to my one true love, and I just couldn't bear to let go of his hand.

By midnight most everyone had found a place to sleep -- either here or at the Dubes. I stayed awake until about 1:30 a.m. and finally fell asleep. I woke at 2:30. Betty was up, too. She helped tuck me back in, and she went back to sleep in my bed.

I couldn't sleep. I couldn't shake the sense that the time was near.

I didn't say a word aloud, but I was talking to sweet Steve in my head. And I could hear him reply.

"It's OK to go now, sweetie," I would tell him, as I continued to clutch his right hand with my left hand. "You can let go."

And he would reply that he was ready. We did this again and again, in a special unspoken language.

His breathing was very shallow and slow. And then there was one loud breath. The hospice nurse, who was sitting in the corner of the room, hurried over and gave me a sad nod.

We woke Betty. And we sobbed.

In minutes, everyone in the house (except Cooper and Katie), plus Ami and Tara across the street, were in the room. In those first moments after Steve's death, we were all supporting one another. Steve's mom. My sister and her husband. Beloved aunt and cousin. My best girlfriend since eighth grade. The friend who introduced me to Steve. Then Steve's father and brother.

I waited until about 5:45 a.m. to wake Cooper. I didn't want to wait too much longer, fearing that as Steve's body changed in appearance, Cooper and Katie would be more frightened.

I told him that Daddy had passed away. I carried him to our bedroom, and he gave Steve's body a hug and a kiss. And again. And then he wanted to go back to bed.

I then woke Katie and gave her the news. She chose to snuggle in his bed, with me on one side and Steve's body on the other. She asked about his white skin and his stillness.

As we waited for the proclamation of death and the UT-SW staff to pick up Steve's body, I held his hand. I traced my fingers over his distinguished eyebrows over and over again. I told him again how much I love him, how I'll always love him, how I wished that we could have beaten that Damm Spot but that we all did the very best we could. I thanked him for giving me the two most amazing children.

In the silence, I kept hearing Steve sing to me. He was singing "Was There Life" by Pete Townshend. It was the first song at our wedding reception in 1994. I can't count the number of times we danced to that song in the kitchen or family room or Steve would just sing it to me out of the blue.

"Was there life before this love
Was there love before this girl I can see
Was there ever love for her before me"
...
You can count on me to stand and say
'Was there ever life before this wonderful day?' "

When Cooper woke again, Melane and I were concerned that maybe he had forgotten the events earlier. He was cheerful.

I asked if he remembered. He said yes.

"But it's OK, because Daddy believed in God and Jesus, so he's in heaven."