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HIV/AIDS Resource Center for Women
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Motherhood and HIV -- the Laughter, the Fears and the Hopes of HIV-Positive Moms

March 21, 2014

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Monica Johnson on Giving Birth to an HIV-Positive Baby, Fighting for Equality and Finding Out She Was Not Alone

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.

Make sure to watch or read the full interview with Monica.

Copyright © 2014 Remedy Health Media, LLC. All rights reserved.
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