March 21, 2014
One of the most common questions that many women living with HIV have is whether they will be able to have healthy children. With the help of modern medicine, we know that the answer is a resounding "YES!" Of course, all the challenges after childbirth can weigh on many women's minds, as well. For those of you who worry about how to disclose your status to your child or how to care for your child's emotional needs, listen to the supportive words of these five women living with HIV who have been there.
Taken from interviews for TheBody.com's This Positive Life series, these short clips are samples of the larger stories each of these interviewees has to tell.
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My son is 24. His wife is 25. They're like six months apart in age. They took it very hard when they found out. I am very close to my son. I am very open -- from sex, to drugs, to funny jokes, to when it comes down to cry. I have a relationship with him that a lot of mothers don't have with their sons. I've always been open with him, since the day he could talk. We still are.
I did keep this from him at first, and he held a grudge, the first six months to a year. But he's seen me during bad times when I've looked my worst, which I tried to hide (and it didn't work). And now he's to the point, "Mom, you're single; you and Dad are divorced. I've dealt with that. I'm over with it. You have HIV. You're going to find somebody else. And if you don't, you know what? Go out and have fun and enjoy your life now. You've raised me and I just want to see you happy."
But I also want to educate them so that they're aware of it, too. Because he does ask me questions -- some I can answer; some I can't. Just today, I've learned a lot that I couldn't answer myself. So the more I know, the better I can educate them.
Like I said, we should all be open with our kids. But I realize a lot of parents aren't. But, yes. I'm blessed; I can be open with mine.
This little girl, I had gotten to take care of her, babysit her from an infant on up. When she was 6, her dad was not able to take care of her. He'd never been able to take care of her. And she'd been passed around from family member to family member and they said, "Aunt Pat," I was Aunt Pat, "can you take care of her?" I said, "OK, if I do, I have to do it weekly."
And within two weeks, I could see that either I was going to invest in having this child and raising her -- and if I did that, I would not stay with this man because the chaos for her would not be healthy. If it had just been me, I would have probably still been there, but because it was her, I was able to disengage from him. He moved out. I started volunteering right then at the AIDS service organization, at CARES. I volunteered. Then I got a part-time job as an administrative assistant. And they kept saying, "Don't you want full time? We'd love to bring you in full time." "No, no, no. I cannot lose that disability -- that insurance." That's another fear.
As my life changed and I was healthier, my meds were going well and I had this girl, this little child that I had to plan for. Also, my mom was starting to show some signs of aging and memory loss. And I said, "I need to create something for all of us." So we started looking at houses. I accepted a full-time position. I gave up my disability. And that's where I'm at now.
How many years have you been at CARES?
I worked at CARES since, I think, '04. I've been full time for almost four years now.
And now is the little girl that you're taking care of still with you? How old would she be then?
She's 13. Let me tell you. Thirteen-year-old female, I don't know, I'm pretty sure I wasn't like that. She is -- the hormones are raging. She's all that. [Laughs.] So it's fun. Sometimes I think, "I'm too old. I'm too tired to take this on." But she has been such a joy and such -- it was good that she came because it changed my life and I'm able to do what I need to do and do it for her and for myself. It made a big difference.
Do you talk to her about HIV? I assume that you have disclosed to her.
Yeah, when she was younger she would tell people, "My mom helps people. She helps them stop smoking." I don't know where she got that from, but that is what she would tell people. And then afterwards, when she'd been in my office -- I used to do prevention -- I'd carry a bag of penis models. And I told her, "Run out to the car and get my black bag," because I had a black bag that had my planner and everything. She comes in with a penis model bag, throws it on the table and they all just go [spilling] onto the table. And she and my mom -- and my mom was horrified at all these purple and orange penises. And my daughter, she was just like, "Oh yeah, that's a penis." I explained I used it for educational purposes and I teach people how to be healthy. Healthy, I used that a lot, so maybe that's where she got the not smoking. And now she's doing very well.
Last year, I had a local news station come and interview me. I talked about HIV and living with HIV a little bit, and what I had wanted for young people to know. And apparently one of my daughter's friends saw that interview and asked her, "Does your mom have AIDS?" And she replied, "I don't know." And they said, "Well, you should know." And she goes, "No, she probably just doesn't want to worry me." And she told me about that conversation with her friend. I said, "OK, well, how do you feel about that?" She goes, "I don't know." I said, "You want to talk about it?" She said, "No."
We watched the video together and she was fine. And I figure there will be a time when she'll need to know more and want to know more, but right now she's OK with it, so I'm OK with it.
I never really wanted kids. That was even before the HIV. I just didn't want kids. But once I started traveling a lot with the HIV stuff, I just didn't think I had time. I thought maybe when I was like 27 or something, I would have a kid. But Daryl, he had different plans. He wanted to have kids. And actually, in December or October of 2008, I went to England for a tour across the UK for two months, so when I came back, we met again. Since that night, he just never left. So I didn't want kids, but we were having sex and the condom actually broke several times in one night. So I think that's the night I got pregnant.
And once we found out I was pregnant, I still didn't want kids as much, but he did. So I was just like, "How am I going to tell?" I was never worried about the baby having HIV because of the technology that I know is out there. But I was like, "How am I going to tell my child that I have HIV?" He was like, "Well, you'll just tell him the same way you tell everyone else." So I was like, "OK." And my mom, when I told her I was pregnant, we found out in January, by February, she had already left everything she owned and moved to New York. So it was set from there.
For women with this disease, we are so obsessed with protecting our children and taking care of them that we do it at our own expense. I was the same. I did everything I could to make them feel like everything was normal, as much as I could.
Two years after my husband died, I told my daughter, who was 10 at the time, what was going on. After I told her, I told her not to tell anybody at school, not to tell anybody on the block, not to tell her brother, who at the time was four years younger than she was. So that was a lot of pressure for this little girl.
When my son became 8, four years later, I disclosed to my son what was going on. Needless to say, they were devastated. They were scared. They were scared of me. My daughter would come in the room and sit, and she would change from one seat to another. She wouldn't sit next to me. She wasn't even doing well in school anymore. I didn't know how to handle it all. I didn't know if she was afraid of me, or what was going on.
I got them counseling. That's when they told me that she was not going to get close to me. It wasn't the stigma. It was more about, "If I get close to her, I can't handle her dying." Eventually, I started reading; giving them information; telling them about HIV.
In terms of myself, I attended a support group that was more of a bereavement group. I was the only HIV-positive woman in the group. The guys were wonderful. They were nice. But they were more talking about how, now that they're HIV positive, they're going to enjoy their fine china, take trips to Europe and enjoy having wonderful expensive meals.
Well, that wasn't my world.
My obsession was what was going to happen with my kids. I couldn't even be in the house with them, because when I looked at them, I just saw orphans. I would run in my room and just break down and cry. Because, for me, that meant that they were going to be alone, and they wouldn't have me. Of course, I knew my family would take care of them. But I'm their mother. And they would be left with no mother and no father.
As I shared that, I realized that the guys would just kind of get dismissive, and went on to, "Well, here's what we're going to do for our lives." They didn't have children; they weren't caregivers. So they didn't understand that. They couldn't relate. So I stopped going to the group.
But I did socialize with the group. I'd have my children around these guys. And so they got comfortable being around other people with HIV. They didn't see just me as HIV.
I had my baby. He was born in April, Easter Sunday, 1990. So it was '89 when I found out I was pregnant. Because he was born in April of '90.
Well, for the first six months of his life, he was very, very, very healthy. He stayed on the growth chart and, you know, the little curves; he was right on target. And right at about 6, 7 months, when he started developing his own immune system, he started getting sick. And they sent him to my pediatrician, who I love, still, today; sent him to New Orleans -- because at that time, New Orleans still had a leper colony; I mean, just for study purposes. So they took him down there; they drew blood; sent it there. And they told us maybe the week before Christmas that he would develop AIDS and probably wouldn't live to be 1 year old.
How did you feel when you first heard that news?
At that point, I was like; I cried for a little minute. And then I came up with a game plan. We took pictures every day. We did birthday parties. We were doing our lifetime worth of stuff in the next six months. Because Easter was going to be in April; this was December. We was trying to get everything out.
What was your baby like?
Oh. Oh, he always smiled. Always, always. He was very happy. Always, always, always, always smiling, even when he was in pain. I've thought about that, because I've never really been sick -- I have gone to the hospital one time, but I've never really been sick -- but I just think they've put a man on the moon; I don't think anything on me should hurt. So I need to tell my doctors, "You need to work it out. I don't think nothing on me should hurt."
He never really verbally communicated, but a couple of times, he had kidney stones. My doctor said that was the extreme, extreme, extreme of pain. He would cry, but he still smiled through that. You know, he just always smiled. I'm like, that ain't the creed I'm cut from. I want something! So he was extremely happy.
Was it at some point during his life that you started to come to terms with your own diagnosis and think about yourself? Or did that come later?
No. Well, what happened was, when he was 2 -- in the state of Louisiana, if you have a physical challenge, or something wrong, you're supposed to be able to start school. I think at this point he was not thriving. He had fallen off the growth chart, and he had lost weight. You know, he looked, not sickly, but he was sick. And the doctor, his pediatrician, started trying to get him into the special-needs school, so he could start the educational process. And the school system where I live said "No." They did not want him to come to school. He could not come to school there, even when he turned 3. And "Nos" really fuel me.
So at this point: "Why can't he come? I want him to have everything everybody else gets." And so then anger kicked in, and so I started advocating on his behalf then. And I advocated on his behalf until he died. And then, when he died, I had about maybe about a six-month grace period. And I started thinking.
Well, no. What happened was, a friend of mine had a baby. And her baby was not infected. She was. And the school system was just not doing her right, because somebody had found out. And I started advocating. And I said, "I wonder how many times this happened to other people?" And they just don't want to say anything. So that's how it started.
How did you start to find other people?
Well, I was actually a part of a Ryan White II service agency. And the director at that time and I were good friends. My son was the first infant client. And so they just wrapped us up; took us in; did a lot for us at that point. And I had met a lot of different people, through groups and through events. And she had sent me to a couple of conferences. Because my son and I, actually: Before he passed, he had gone to an AIDS, Medicine & Miracles retreat with me in Oakland. And we met a lot of other people; found out, you know, you truly are not alone.