Time is Liquid.

Time is funny. When you lie in a bed day after day and every day is pretty much the same, it all starts to melt together. Oh, there are highlights, like my little girl's visits, and the time my 89 year old roommate came over to point out that there was raw meat all over the ceiling and walls. (What do you say to a statement like that?) 

After my surgery, I went to a long-term skilled facility. All I really remember about it is that my window overlooked a beautiful, gothic looking church which I eventually realized was empty. It was mysterious and I never found out why it was for sale. I also remember my doctors begging me to eat. I'd try, but it would just come back up, which I found to be highly unpleasant, so I stopped trying. "You've become malnourished," they'd say. "If you don't eat, you're going to starve to death." I couldn't help them. So I lost 110 pounds in a few months. I don't recommend it as a weight loss regime. Strangely, after a lifetime of losing and regaining thousands of pounds, I had finally decided that the only way I'd ever lose and keep off weight would be if I caught a cataclysmic disease. Careful what you wish for, right?

Instead of returning to the same nursing home, I was misled into thinking that a place called "South Park" would be a good place to live. It was far from being a good place to live. By the first 3 hours, I was on the phone, sobbing and begging to be taken out of there. I was there 4 days. By the time I left, I had been screamed at by no fewer than three CNAs or nurses because I'd had the gall to make a complaint about them, I'd been denied drinking water, i was not bathed regularly except by sweat (because my room was hellishly hot) and when I finally managed to get transferred to my old nursing home, my wound had reopened and I was covered with a rash from head to toe. The "new" nursing home immediately transferred me to a hospital for treatment.

Then I received a bill for more than $500 from South Park. Guess whether or not I ever paid it.

So I ended up at the first nursing home again. They had a new administrator, a dear man named Greg, and my care was much improved. He arranged for me to be in an extra-wide bed so Lyra could snuggle up in bed with me when she visited. I remember one day she brought her laptop so she could demonstrate some of her favorite games for me. She was sitting up in bed next to me, playing her games, her chirpy little voice explaining what she was doing, when she suddenly stopped playing and said, "I love you!" Then started playing again. I said thank you, so she stopped again and asked, "Why are you thanking me?"

I answered, "Because it makes my heart happy when you tell me that." She just said "oh" and went on playing. Her visits were the highlight of my life.

Eventually, I had a feeding tube inserted into my stomach. That way they could "feed" me nutritional supplements as well as crushing up my meds and giving them to me. It wasn't so bad. It sure as hell beat throwing up all the time or starving to death.

Meanwhile, Lyra's health started going downhill. First, she became too weak to walk and had to be in a wheelchair. She started getting steroids which made her little face and body puff up, to counteract the swelling of the membrane around her brain and to counteract the seizures she'd begun to have. She lost the sight in one eye then became too weak to even hold a cup. She could no longer play her beloved computer games. She had terrible headaches. She slept a lot. Still, her daddy brought her to visit every day she was up to it. He'd lay her on the big bed with me and she'd snuggle her little warm body next to mine. And then she'd sleep. And I'd put my cheek next to her head and just soak up her presence, knowing, and even hoping, that she wouldn't be with us much longer. She was in pain, and that had already broken my heart.

We visited this way on Monday, May 23, 2011. When it came time for her to leave, her daddy was wheeling her across the end of my bed and stopped. She had brought a plush purple pillow with a white cat on it to show me. It was the pillow she slept on at night. He asked her, "Lyra, do you want to take your pillow home or leave it for Mommy?"

She said, simply, "Leave it for Mommy." As they headed to the door, I said, as I always did, "I love you Lyra" and she answered as she always did, "Love you too." Then they were gone.

The next day was full of thunderstorms and tornado warnings, so we decided she'd better not visit. Wednesday morning I had an urge to call her daddy at 8:15 in the morning to ask how she was, but I didn't call because sometimes they slept late.

That afternoon her Daddy showed up with a whole bunch of people, but not Lyra. He threw his arms around me and started crying. He didn't have to tell me. She was gone. She'd had a really bad seizure that morning and he was sitting on their couch, holding her and stroking her head. She was unconscious, he said. Then she let out a few quiet gasps and slipped away. It was 8:15 a.m. It was as peaceful a death as anyone could ask for.

Her Celebration of Life ceremony was held two days later. I was in the hospital with a huge abcess under my feeding tube and in a lot of physical pain. But I was going and that was final. Be damned to the consequences. It was a lovely service. I know that because it was videotaped and i watched the video. Between the pain and the pain medication, I was barely conscious during the ceremony. But when I watch the video, I can picture Lyra running up and down the aisles, laughing, and throwing her arms around people's knees for a hug like she'd done every Sunday at church.

The next day I had surgery. I didn't care. My reason for living was gone and I really was ready to follow her. I survived, but the emotional price of that survival was monumental. I didn't understand how I could hurt that much and still breathe. I still don't.

This is a photo of our last visit. Lyra's face was puffy and her stubby hair prickled my face, but she was still my beautiful child and always will be.