Like many families parenting an HIV positive child, we echo commonly-heard statements that it’s very easy as far as special needs go. Our son from East Africa contracted HIV at birth, came home to us as an older toddler and now is 7 years old. He’s doing great, and we are so thankful. He’s our healthiest child out of a few bio and a few adopted! The issue that has taken the most energy from us so far, is disclosure–weighing a zillion factors, thinking a zillion thoughts, thinking about our son’s growing-up years, considering the amount of ignorance/stigma in our nation, city and smaller circles (our kids’ school, etc.). There are endless factors that a family must weigh, and no two situations will ever be identical. Where any one family falls on the disclosure spectrum is highly personal and highly unique to that family’s situation. My own disclaimer is that I completely understand the pros and cons of the various levels of disclosure. I am friends with people on all ends and all over the middle of the spectrum and recognize the unique factors that have led each family to the decision they have made.
All that said–our disclosure decision that I’m writing about is simply an account of why we chose what we did, because I was asked to do so by Project Hopeful. We are what some people call a “non-disclosure” family. I do not believe that being private is the best option for others–the best option is simply what is best for that particular family!
I consider our family private on HIV status, for now. We have disclosed our child’s HIV status to close family and a few select friends, and we’ll keep it as such for the time being. We chose this because we knew we were not 100% convinced that completely open or completely private was the best fit for our family. We have the support of those we love the most, because this is an issue that we as the parents want to be able to share our joys and concerns with those closest to us. For example, sharing our answer to prayer when our son reached undetectable status just a few months after coming home to the US! We were able to share that exciting news and have those closest to us rejoicing with us, too. On the flipside, we weren’t ready to be completely open. Our son being the young age that he was (and still is), we felt that since this is his diagnosis, we would wait to disclose any further until he reaches an age where he can understand a lot more and be the one to lead the decision to keep disclosure where it is currently at, or to open up more. We will support whatever he decides!
What being mostly private does not mean for us: It does not mean that we don’t have or don’t take many opportunities to educate and advocate and help combat ignorance/stigma. We are able to do this all the time without hinting that one of our own children is positive. Being an adoptive family, we have ample opportunities to talk adoption, special needs adoption, and advocate/educate for HIV and state why we would gladly say yes to an HIV positive child. I feel some sense of duty to do my part to educate and raise awareness, because where would we or our son be if there hadn’t been voices out there advocating and educating?! We would’ve never known that HIV is totally doable. I am happy to do my part as much as I can, but I simply do it in a way that does not divulge one of my children’s private information.
Being private about our son’s status also does not mean that we are “keeping a secret” or that there is even one iota of shame or fear behind our decision. There are a lot of things in all of our lives that are private and personal. Similarly, our son’s HIV status is just private information right now, plain and simple. No secrecy, no shame, and no fear behind being mostly non-disclosing and how we handle it. Secrecy, to me, carries a connotation of shame or embarrassment, and HIV is nothing to be ashamed of. No matter if we’re private for just a time, or private forever, shame will have nothing to do with it, ever.
It saddens me that disclosure has sometimes been a dividing line among people in the HIV adoption community and has become such a “hot topic.” There can’t be–and there never will be–ONE easy answer to the disclosure issue. I would love to see nothing but support, solidarity, and encouragement to one another, as a community that recognizes the uniqueness of each family’s personal decision. We want nothing but support, understanding, and acceptance from the world at-large regarding our families and our children living with HIV, so let’s start with each other! And let’s not settle for “agreeing to disagree.” We can do better than that. Let’s pitch the disagreeing and agree to fully recognize the fact that no family’s decision will ever look exactly like the next. Let’s agree to be grown-ups who recognize that there are pros and cons to any disclosure decision and that every family is intelligent enough to weigh that list and decide which of those bear more or less weight for them and their unique circumstances. Parents, we don’t have to let the disclosure decision be the hot topic in adoption-land, and it’s a little embarrassing to think that it has divided many, when we are trying to unite for the cause of these precious children and others living with HIV! We have bigger fish to fry. Fist-bumps of solidarity all around.
We at Project Hopeful would like to sincerely thank this family for sharing their journey. We stand with you in solidarity and support your non-disclosure decision. Amen!