"I call them slice of life dreams. I have a dream that both of my parents are alive and I'm livin' at home and everything's like it used to be. We're all there, my husband Jerry's there, and everyday things are happening. The swing set is still in the back yard and we're playing with the baby. You know, just those kinds of dreams.
And then I wake up, and it's this.
I live a nightmare. I had my niece come this weekend to stay with me. And I was really excited. Just her coming here was a big thing. And she got here, and it really disappointed me. She was supposed to stay from Friday night until Sunday evening. She left Saturday. She couldn't handle it. She said, "There's just too many bad things happening here; it's too depressing.'
I said, "What did you think my life is like?'
"Well, you're sick.'
I said, "Yeah, I'm sick.' I was literally in the bathroom hugging the commode from 1 a.m. Friday to Saturday night. She wouldn't take a shower, she wouldn't eat. Finally, I had to order some food out. And if the baby would drool on her, she'd go like that, jerk away. She's never really been like that with the baby.
She just started thinking about staying here. Because the family, the way they are, they were drumming it into her head: You're gonna get AIDS, you're gonna get it.
This is my nightmare. And she hit it, right there. "It's depressing here; I wanna go home. Everything bad is happening to you.'
Both of my parents are deceased. My dad died of cancer. My mom was murdered. But if they were here right now, they would be very supportive. I wouldn't have to be begging for food, my child wouldn't have to use blankets for diapers 'cause I don't have any money for diapers. I wouldn't have to be fighting with the state for medical care, money, everything. Because I gotta fight. If my parents were here, I wouldn't have to go through this. And they would see that my husband Jerry got the proper care also.
Today is really a good day. I was able to get up and go get my mail. My mailbox is right downstairs. So this is like, I'm having a real good day today. I'll be suffering for it tomorrow, though.
Every day, it's a new problem medically with my body. Like the arthritis, the pain never goes away, but some days, I'm all swollen and I can hardly walk _ Oops! Okay, Glenda, here ya go. She's workin' on sittin' back up. Here, maybe I'll sit here, right next to her on the floor.
Right now I've got impetigo. I had a migraine the other day. These are normal things that can happen to other people, but my body's been bombarded, it seems.
Usually, I get up, of course I get her her bottle, she comes first, I get back in bed, and that's where I stay until it's time to get her a bottle. It didn't used to be like that. I used to be able to get up and do things. I've been having friends come in helping me wash my dishes, help me with her. Because, for a while I couldn't even make it to the bathroom without someone helping me. The bathroom is about 10 feet away from my bed.
My best day is when I can get up and even put a TV dinner in, wash bottles, and feed her her own bottle without having to lay her down and say, Here. I'm so glad in a way she can hold her own bottle now.
She means more to me than anything in this world. It took us a lot to get her here. It took us seven years of going through all the different methods the doctors tell you. This temperature method, doing this and doing that. We never could get pregnant. So when I found out I was pregnant, we were just so happy.
And then when I was four months pregnant, I found out that Jerry had full-blown AIDS. With that, I went and got tested, and it took another month. They did one test, and it was positive,
but they did others to make sure. But I
Really, my first thought was her, and my second thought was myself. If I had it, what would happen to her? I was advised to have an abortion. I was at the clinic, I had been examined, my clothes were off, I was laying there. They showed me a picture of her on the sonogram. And I couldn't do it. She was movin' around. She had the hiccups.
Now I'm playin' this waiting game _ I've got 12 to 14 more months to go before we'll know if she's actually gonna have AIDS. See, the mother's antibodies stay in the system for 18 months. She's testing positive for HIV because my antibodies are in her system. They did a DNA test on her when she was first born, and it was positive. But I really, firmly believe in prayer. Because I have taken her to healing places, and I'm praying every day. And her last DNA test was negative. Of course, there can be five negatives, and then another positive. But I believe that God can work miracles.
And yes, if she does get AIDS, I will be sorry I had her in a way. Well, who wouldn't? What this poor little girl has to go through. She has to have her blood work drawn. And that's horrible. They pull seven or eight vials out of her for testing. I don't want her to go through that.
But also, I'm hoping that through us, we can educate other people. If someone can be saved by this nightmare that we're going through, then hopefully . . . it'll be worth . . .
She wants that tape recorder, see? Anything that's shiny. Like the stereo or the TV. She likes that.
I was in the room when the doctor told Jerry he's been carrying this since before he met me. He got it heterosexually, but he doesn't know from who, it's been so long ago. We've been together eight years. From the moment I saw him _ it was that way with him, too _ I fell in love with him. I love him very much and he loves me and we've been through hell together.
We've had our ups and downs, been separated now and then. We didn't get married until a little while ago. We talked about it through the years. But it's scary, especially when you've been through it before, like we both had. It's like _ people change when you get married. But after we had her, we really wanted to make it right.
Jerry does glass work, and he's always worked. Last year, he was getting sick. Just like a cold, with a fever. I kept taking him to the emergency room. They kept sending him home. So finally, I said, "Look. His fever is 106. He's delirious. I want him admitted for tests.' So they did. He was in there for a couple of weeks, and then they found out that it was AIDS. This was last September.
On Jerry's part, when he first found out, he was angry. And I stayed with him in the hospital, almost the whole two months. I wouldn't leave. His attitude was: He wanted me to leave and leave for good. This was before I was diagnosed. He thought if I had a chance to go find someone else, not go through this nightmare with him. He wanted me to stay, don't get me wrong, but he wanted me to not have to go through it.
Jerry felt guilty. I was never angry, not with him. What I'm angry for, I guess, is just the disease itself. 'Cause no one asks for AIDS. And I'm angry for the way people discriminate against you. One thing that has changed a lot _ my family. Forget that. I have only one sister who has stuck by me the whole time. You really find out who your friends are. I have a lot of them. A lot of people who, just through the media, contacted me and wanted to help. 'Cause before I went public, I wasn't getting any help. The Tampa AIDS Network helped me a lot. But there's only so much they can do.
When Jerry came home from the hospital, it was hard. Takin' care of someone who's sick and can't get out of bed a lot of days. It was like I had two children. I had to feed him on a lot of days. Medicines around the clock. I'm talking, there were 30 different medicines he was on that he had to take all day and all night. I'd
have to set my alarm to get up in the middle of the
He's got some forgetfulness, from the medicine. So it was hard dealing with that. And he has seizures. I never knew what was gonna happen when he had a seizure, or if he was gonna come out of it. And he kept me runnin' all the time. If he wanted a drink in the middle of the night, I had to get it for him.
Everything was touched by the illness. I'd be worried Glenda would get Jerry's impetigo when he touched her. 'Course he's not like me, he doesn't get the disease with the hangnails I have from an infection. So his hands are okay. But he would always wash his hands. Or if he was physically unable to get up, I would bring the wipes, and he would clean his hands real good. Put a towel down over his lap _ he's got the sores on his legs _ and he would hold her, and play with her.
I never let the baby pick up on any of this, if possible. Like, in the worst moment when I was trying to take care of Jerry, I was getting to the point where I would yell. Because I said, "I'm not a superwoman, I can't take care of you and her, you're gonna have to wait while I change her diaper.' And through all of that, if she would start to cry, I would smile, talk to her. 'Cause I don't want her picking up on this. . . .
I took care of Jerry up until about a month-and-a-half ago, and I had to finally admit him to the hospital again, and then to a nursing home. I haven't been able to see him for about three weeks. And it hurts. Every day, he calls just to tell me he loves me, to see how I'm doin', and give me and update on what he's doin'. And I do the same thing. It's so funny, because Glenda can be screaming, and I'll put the phone up to her ear and she'll smile, and make noises. So that, you know. Helps. Our phone bill is just . . . this is just breakin' my heart, not having him here.
If I could get my car working, I could hopefully get over to see Jerry more often. Although my illness right now _ it would take a lot for me to get over there.
It's gettin' so hard for him. A while back, he got out for a day and a night so he could go to Busch Gardens. That was one of his final requests. He'd been here for 10 years in the Tampa Bay area, and he has been everywhere but Busch Gardens.
Well, of course, that wore him out for the day. Even though he was in a wheelchair and I was pushing him, just sitting up all those hours really did a lot.
When he came home that night, he was laying down on the couch. Glenda was sitting on his lap, he was trying to play with her. He tried to pick her up, and he couldn't. He started to cry.
Glenda has had a lot of symptoms. She's had diarrhea, fevers, yeast infections, ear infections. But I'm hoping they're caused from her teething. I don't know where she's going to go yet. I just don't know.
She wants her bottle. It's in the kitchen here. See, I bleach everything now. I don't want her to get this impetigo. When my hands are cleared up, I don't have to wear the gloves.
But, they're not ever cleared up anymore.