Caring for HIV-Negative Kids (and Yourself) in an "HIV Family"
September 19, 2012
Jessica Mardis: Thank you. You know, I honestly believed I was stupid. I had an awakening moment. Like I said earlier, Charles King, he changed my life. He believed in me. We sat and talked. And all of a sudden, I started believing in myself. Like, hey, you know what? Let me do this. I got awards and all types of honors, and just did things that I never believed I could do before, which helped me tremendously to believe in myself and to want to give that back.
Honestly, that's helped me a lot. I adhere to my medications. I take care of myself mentally, physically, emotionally -- I'm in a great relationship, which I think helps. Because a lot of times we sell ourselves short when we're positive. You meet somebody else who is positive, and they might not be the right fit for you, but you're thinking, "Well, this might be my only shot." I dated several guys before I found the one I'm with now. HIV changes us, but we have to find that strength within ourselves to not sell ourselves so short that we wind up with somebody we're not supposed to be with.
I'm fortunate that I did find people that believed in me -- even people who weren't in my area -- people who just saw something in me and said, "Hey, you can do this," and helped me step outside of that comfort zone. When I started college, I gave that my all. And moving over to a new area, it's like I'm starting over again, which is why I was so honored and intrigued about this conversation. Because it is my passion to help other people deal with what they're going through, because we're not alone. As I've heard you ladies talk, the whole conversation has just been enlightening for me, and helpful.
You can get back to that, "Oh, gosh, I feel alone." But we're not alone. There are millions of people going through what we're going through. A lot of women are doing this in silence. It's important for us to vocalize that, and to be there for one another, and to speak about what we've gone through. Because the same things that y'all are talking about you've gone through, I've gone through -- or I will go through. And that helps me.
Shana Cozad: It's helped me a lot, too. I've definitely been through my own moments of wondering, "Am I the only woman on the planet that tried to have children through this disease? Am I the only woman that's feeling this way?" It's a very difficult journey to have to make, but it is very refreshing to know that other women have either forged the path before me, or that there are other women who may hear or read this conversation and decide to embark upon this journey because of us. That's a powerful piece of responsibility.
It has been an amazing journey. And in hindsight, I definitely see where sometimes the blessings of the things that have been so hard have made my mothering ability perhaps 10 times stronger than it would have been had I not been living with this disease.
My son and I were just tied at the hip when he was little. Like Angela said, I had a moment of disclosure robbed from me. My diagnosis was disclosed to him at the age of 4, and he was told that I would be dead when he was 7. So the entire year that he was 7, he lived in fear. He climbed in my lap every day, and we cried, and we held each other, and we said how much we loved each other.
But when he turned 8, he realized that there was something different that was going to happen for us. His only wish when he turned 8 was that I would still be there when he was 8 and a half. And then we kept doing that, trying to survive another six months ...
Then, like Rusti said, you quit surviving at some point, and I said: "You know what, Shana? I'm not just surviving. I am going to thrive. I've got things that I want to do. There are places I want to go. There are people I want to meet. There's stuff I'm here to do. And it is more than just this disease."
Then my girls came along. My girls are now 11 and 9, and they've had a very alternate type of view with this disease. When my girls were in third and fourth grade, I was on the front page of the Tulsa World. At school, when they talked about "Take Your Child to Work Day," they took the article in to their classroom. They held up the article and they said, "This is our mom. This is what she does. She goes around the community and she talks and she speaks." Completely fearless.
I was really proud, and I was really hesitant. And I was somewhat fearful. We all know that there are still vast amounts of our community that need to change, but the only way to change is going to be through this next generation. If we instill the fear in them of that stigma, then we can pass that down. But if we instill in them that it is OK to talk about, then it is OK to talk about. It is OK for children to say, "My mother has HIV. We are an HIV family. But she is the only one that's infected." They need permission to have that freedom to say those words. If we don't give them that permission, the world will never change.
So it has been an amazing journey of hills, and of valleys. I turned 40, and I'm looking at turning 41 in a few weeks. Turning 40 for me was a defining moment. I've also been back in school, and I've been tackling things that I've always wanted to do. I've been doing some of those bucket list things. But I've really come to a place with myself of feeling I am so much more than just a woman with HIV. And I'm so much more than a mother. I'm going to blaze in the trail of just being me, Shana.
There's still a lot to behold as far as who I'm growing up to be.
This transcript has been edited for clarity.