This post is sponsored by Children’s Hospital of Wisconsin and tells the story of a Milwaukee-area mom and her son who have been working hard to not only combat pediatric HIV, but also provide education about the virus to erase the stigma that is still attached to it.
Desiree was nervous, preparing for a public reading of her self-published book at the local library in her community. Suddenly, the event was called off without warning because the book was deemed inappropriate for children. Unfortunately, this is a misconception Desiree has had to deal with far too often.
Desiree’s son is HIV positive.
When she and her husband adopted their son Tariku from Ethiopia, they did so knowing that the virus lived inside his little body. They turned to Children’s Hospital of Wisconsin for Tariku’s treatment and though they found they were treated with expertise and kindness within the hospital walls, this was not the case in their day-to-day interactions with others. In an effort to clear up misconceptions and encourage others who might be in the same situation, Desiree wrote a book about Tariku titled A Positive Superhero: Growing up with HIV.
Today, in partnership with Children’s Hospital of Wisconsin, we are proud to share their story in Desiree’s own words, along with insights from Barb Cuene, the nurse who has become closest with their family through Tariku’s treatment.
Why did you write A Positive Superhero: Growing Up with HIV?
Desiree: We decided to adopt a child that was HIV positive, but then after getting home we weren’t so open about it with everybody. We were open with the adoption circle, and we were with some of our family and friends, but over the years we found that there was a lot of stigma. Just little comments here and there. But what really pushed me over the edge was that I was tested for HIV without my consent, and it was based solely on the fact that I had a child in my house with HIV. I came home and I was like, “That’s it. I’m done. I need to stand up for me, my kid, everyone else who has HIV.”
What were the circumstances that led to you getting tested for HIV without your consent?
Desiree: I got really sick, and it must have been in my file somewhere that I had a son with HIV. When that happened, I was like, “You’re a doctor. You should know I can’t get it from my son just from living with him.” From that incident, I started thinking of a way I could steer discussion about HIV in a good light, and I thought maybe I could write a children’s book. I also wanted Tariku to be able to explain it to his friends, and there really aren’t a lot of resources out there for us, so I thought we could make a book and see where it goes. I wrote the story and I read it to Tariku a few times to see if he could understand it, and then I sent it out to a couple different publishers. It never went anywhere, but I knew that I could draw – I’m an artist – so I just kept going. This past year I self-published it, just because I felt like this is something that’s not out there and it needs to be told. People don’t need to be afraid of HIV and you can’t get it from living with anyone else in a normal, healthful family setting. That’s the story I wanted to tell just so that my son can share it with his friends. They don’t need to be afraid of him.
What are some of the other big stigmas or big misconceptions you’ve had to go up against?
Desiree: I guess another one is just people living in the fear of dying from it. When everyone first heard about HIV and AIDS back in the ’80s, that’s kind of what happened, and that’s what people were taught. I think it just never changed over the years, even though medicines did evolve and now people are living normal, healthy lives with HIV. But I don’t think that transferred into the education piece.
It doesn’t sound like having HIV really affects Tariku day to day.
Desiree: It doesn’t, no. And I think that’s another reason I wanted to write the book, just to let him know it’s not something he needs to be ashamed of or afraid of, and I didn’t want his friends to be afraid of that either. He hasn’t had to have sex-ed classes yet or health classes yet, but I think when he gets there he’ll realize maybe a little bit more about the disease, and I’m hoping that will lessen his fears as he grows up.
How have things been since the book has come out?
Desiree: I’ve gotten a lot of emails just that are really positive. My favorite email that I got was from this one mom who said she shared the book with her daughter and then afterward told her daughter that their son was HIV positive. They had adopted him about three years ago and they had never told their daughter. So just the fact that it’s opening those conversations and helping people to open up about it is a really good thing. A lot of our friends didn’t really know I guess exactly what HIV meant, what living with it meant, so that is another great conversation starter. I just think the fears that were developed when the disease first came out are still there and a lot of people aren’t talking about it, so that’s kind of what I’m hitting. I get it, I had that fear, too. When my friend said she was going to adopt a boy with HIV, I thought she was crazy. And then I learned, and so I feel like I’m constantly reminding myself that it wasn’t that long ago that I thought the same way.
The Medical Perspective
Desiree said she wrote this book because there’s a stigma associated with HIV because of a lot of misinformation. Is this something you have noticed?
Barb Cuene, RN: I’ve been doing this a long time, and so I think that information has gotten better over the years but there’s still a stigma, absolutely. People still lose jobs and lose housing.
Do you think most of it stems from people thinking they can get HIV in ways that they really can’t?
Cuene: I think that’s probably most of it. [Back when HIV first was becoming known] people wanted people quarantined because they didn’t know how it was transmitted. It’s pretty clear now how it’s transmitted. I do believe people can hear that, that it reduces their anxiety. So it’s a matter of talking to people in a way that they can hear.
Talk about your experiences caring for Desiree and her son.
Cuene: Well, I love Desiree. She’s a great mom to her kids, and she advocates for, not just her child, but any child living with HIV. The book that she wrote is to help other kids, and she certainly didn’t have to do that. That’s something she chose to do because she knew kids could benefit from it. She’s already taking care of her own child, so the fact that she took the time to do this is pretty amazing. She’s an amazing mom and advocate for people with the virus.
She says her son, outside of his HIV, is the picture of health. You wouldn’t know anything was different.
Cuene: Nope, and that’s very true for anybody. You can’t tell by what people look like that they have HIV. You don’t know when you meet somebody on the street how their lives are touched by HIV, because people don’t talk about it. It’s a secret. And it’s only until somebody’s brave enough to take that first step that you actually learn.
What is the Children’s Hospital of Wisconsin approach to caring for a child with HIV?
Cuene: We work with families and their primary care providers and we try to normalize the illness as much as we can so that the kids are seen by their primary care providers for the bulk of their care. For instance, with Desiree – because her son has been in our program long enough and is stable – we see him every six months. All of their other care is done through their primary care provider. We’re trying to normalize it like diabetes or other chronic disease where you don’t always have to come to Children’s, and we go to their primary care providers so we’re really a community-based program. Especially if you have kids who are living quite a distance away, it really makes it better care for the families.
Resources about HIV
A Positive Superhero
We are thrilled to spotlight Desiree’s book, A Positive Superhero: Growing up with HIV. Desiree wrote, illustrated and self-published this book in an effort to give a voice to her son as well as to others who are living with HIV and to educate kids on what the virus is as well as what it is not.