Caring for HIV-Negative Kids (and Yourself) in an "HIV Family"
September 19, 2012
Angela Davey: I also go up and do public testimony, and talk to our legislators, and try to educate in various different avenues. Often, my story is shared with them, and I've taken my daughter with me to those events. I've approached Rotary Clubs, and such places, where I've spoken to closed, invited groups, and she's been with me. I home-schooled her this last year, so she attended all my board meetings and is very enthusiastic about participating and education. So I have a little activist on my hands.
However, on the flip side of that, when she was little, depending on what was appropriate for her age, as far as understanding, it used to be that all she understood was that mommy had a bug, and the bug ate other things in her body, and it made her sick. That language was immature, but she understood.
As my complications and coinfections have become more prominent, and I spend more time managing them, and they're more visible, we've begun to talk about it quite a bit. We do check-ins. Because even though she's had this knowledge and awareness, it has changed as she's gotten older, and her understanding has grown; she can physically see differences in me that, before, were more invisible. So there have been different stages. Just like there are different stages of chronic illness, there are different stages of working through it as a family unit.
She's going to be 11 at the end of July. I'm glad Rusti brought up how her son had a shift in wanting to talk about HIV -- that shift that coincides with the teenage years, puberty and sexuality. That gives me a heads up! This is where I love being able to talk to other people in similar circumstances. Because it gives me a heads up that I may encounter this, and probably should be aware of that -- where I probably wouldn't have, if Rusti hadn't shared.
I've also been on TV, and spoken on World AIDS Day. Doing it in Rochester and doing it in Minnesota are not quite the same as if I was in San Francisco. I've had backlash from the community. I've had things thrown on my yard. I get posts on our fan page that say ignorant things. In school, she entrusted one person with the information that her mom was HIV positive. It's strange what kids often experience when they're learning to form relationships outside of their home -- the whole trust issue. That person told their parents and their reaction was that they didn't invite Lilly over to play after that.
We had a talk about that, and how that made her feel. Even though she is negative, HIV does affect her life. Because I am active, and especially because I'm getting ready to do this huge endeavor that will probably encompass the health department and many other different entities, I'm probably going to be exposed even more than I was. Because that's what I'm trying to do, is get people to be aware, and just realize that HIV exists. So I'm trying to be aware of how that affects and impacts Lilly, as well.
But can I share one thing real quick? I did have something happen that really floored me. When she was about 5 -- this was about the time she went from understanding that I had a "bug" to calling it a "virus" and using that language, but she still didn't really get HIV and understand the stigma behind it. She also didn't know at that point that my partner of 10 years wasn't her biological father. I hadn't shared that with her. I was waiting. It was just something I was not ready to do yet.
We went to a doctor's appointment for her. We'd been referred to an asthma specialist. He was, of course, looking through her medical record. I, my partner, and Lilly were present in the room. And apparently, he just started reading out loud what he was seeing in her medical record, and asking questions: "So, I see her father died of AIDS. And, you're infected."
Lilly turned to me and just had this shocked look. "What do you mean? My dad's sitting right there." And then, she hadn't heard the word "AIDS." She knew "HIV" and she knew a "virus." But what really bothered me was, one, the disclosure. We were there for an asthma appointment. She's HIV negative.
Rusti Miller-Hill: That has nothing to do with it.
Angela Davey: Absolutely nothing to do with the circumstance that had brought us into this doctor's office. Plus, he had just robbed me of my power of explaining to her what was a very difficult and complicated time period. So, we recovered from that. I explained what I could. And each year, for a couple of years, she would ask a couple of questions about her biological father. I always tried to keep it positive, and do all the things you should do. But honestly, I can say I'm still angry that that was taken away.
Shana Cozad: Oh, yes. I would have been infuriated, and I would have made a big stink about it. That was completely unprofessional.
Rusti Miller-Hill: Absolutely.
Angela Davey: That's why I push so hard to try to educate people. If you're reading this and you're pregnant, or you are thinking about becoming pregnant, but you don't know your status ... I think everybody should know their status. I think it should be part of just the regular blood draw, done at your annual exam. Because if HIV is going to end, it's got to start ending with us. And when I say us, I mean each person knowing their status and then acting accordingly from that.
My experience hasn't always been that great with health professionals, as far as their sensitivity.
Shana Cozad: Long way to go in that department.
Angela Davey: Yes.
Shana Cozad: Now that our babies have been born, and we've gotten through the whole testing phase and the AZT phase, and now that we've got full-blown children, or even teenagers: How do you ladies feel about the issue of self-care? How do you remember to take care of yourself? How do you continue to put yourself first, so that you are not put on the back burner as a woman and a mother?
Angela Davey: I'm glad you asked that. The fact is, there are most likely a lot of women out there who have discovered they are HIV positive and pregnant simultaneously, or they'd already been diagnosed, but still had many cofactors that truly were obstacles to their addressing their life situation and diagnosis, much less a pregnancy on top of it. Whether those cofactors are chemical dependency, actively engaging in high-risk behavior, complete avoidance, mental health issues or, like me when Lilly was little, being pregnant and having a baby in an area where medical attention, much less HIV care, is minimal if not zero, we share the same fears. We've probably all lost sleep, had to dig deep within ourselves and reach out for the best support we could find. We've had great joy and uncertainty. It's how you deal with the uncertainty that can make a difference.
It is never too late, or too early, in motherhood to start caring for ourselves. We learn every day of our lives and continue to grow.
Rusti Miller-Hill: Well, I turned 50 in October.
Shana Cozad: Yay!
Rusti Miller-Hill: Thank you. And I realized that I have spent the better part of my life raising children. I became a mom at the age of 15; was diagnosed in 1991; had a son in 1995; lost children, too, through my addiction in the early part of the '90s. And one of the things that I've been working on for the last year is taking care of myself and really, really taking time out for me. I journal. I make sure I keep my medical appointments. I just graduated from college this year with my bachelor's degree, and I'm looking to continue and complete my master's. These are all things that I wanted to do as a young girl, growing up. So what I've done is ... I guess the men call it their "bucket list." I've just started to live and dream, and really look at the fact that it's been 20 years and I'm still here. If I'm going to die, I'm going to die, but I'm going to die doing what it is that makes me happy.
I've told my children and my husband that I am preparing for the second half of my life. For me, that means trying new things, trying new places, letting go of old baggage, not living in a world of woulda-coulda-shoulda.
I'm a grandmother now. My grandkids tease me: "You don't make cookies and stuff like that." No, I wait for you to bake them and then eat them! That's where I'm at. And, of course, letting them know they have my support.
Each day, I'm learning to let go of more. I'm stretching myself, and I'm taking chances. I'm saying yes to things that I might not have said yes to five years ago ... because of whatever. But in looking at taking care of me ... that's where I need to go. And I think for each person it's different. What works for me is not going to work for you. But as long as we've identified what it is that we want, or where we're trying to go, I think that's the beginning of that self-care. Because can't nobody love us the way that we love ourselves, you know?
As women, we come with our stuff. I know for me, as a black woman, growing up, I came with all the "-isms." All the good and the bad, all that stuff I grew up with that I still carry; then the stigma of HIV on top of that. And somewhere down deep, the real me was buried. In order to journey toward my self-care, I have to carve out who I am. I'm not the skinniest person; I'm not, the cutest person. But I had to become comfortable with me in order for me to make it beyond the diagnosis, beyond the stigma, beyond what the community said. In order for me to be here today, I had to learn how to be me and love who I am. I think that's the beginning of any self-care.
Jessica Mardis: For me, believing in myself again was really important, as well. I dropped out of school, and then tested positive at 19 and basically kind of gave up on myself. My life was over, blah, blah -- all the negatives you can think of: Been there, done that.
But waking up and learning that I was smarter than I gave myself credit for, getting my GED in 2007, beginning college in 2008 -- I have a year left on my bachelor's degree, then I plan to go for my master's.
Shana Cozad: Yay!
Rusti Miller-Hill: Congratulations.