Disclosure

It all started about four years ago. 

Exhaustive background checks. Probing questionnaires. Intrusive interviews. Meticulous screenings. By the time it was over they knew more about me than my own mother did. 

We passed the preliminary phase and received a packet in the mail. On one of the forms was a series of checkboxes. We carefully made our selections and overnighted it back to the sender. 

Several months passed before I received the phone call.  

"We have a potential match that meets all your criteria," the voice on the other end explained. 

"Yes, we accept!" came my immediate response. 

"Don't you need time to think about it?" she asked, disbelief shadowing her tone. 

"No. Our answer is yes. Please begin the next steps immediately," I confirmed.    

***

In that brief moment I was initiated into one of the most secretive societies known to motherhood. A club filled with cocktails and needles; pill popping habits and rendezvous in big cities; membership in private, unsearchable Facebook groups and connections with elite experts. I suppose it's a sort of fight club - the first rule about being in the club is that you're not allowed to talk about the club.

To talk about the club risks exposure; it jeopardizes friendships and playdates; erects barricades and sets up quarantine tents. Exposure can transform the landscape of relationship into a cold war zone - isolating individuals, branding them as "different" and "unsafe" despite the best of intentions to maintain normalcy. It blurs the line between secrecy and privacy, shame and preservation. 

In all other settings, I might weigh the risks and benefits of joining such a restrictive and demanding organization. But in this case, it wasn't my choice to make - I waived that decision when I said "yes" to the woman on the phone, when I was entrusted with classified information, charged as a guardian until the master was ready to set the truth free. 

Once admitted, there is only one way out of the club. Disclosure. 

Disclosure meant telling people that our son would have the same life expectancy as a person without his condition. 

Disclosure meant telling people that our son was not contagious - he could share a beach towel or a sippy cup with his friend on a playdate without consequence. 

Disclosure meant telling people there was no risk in visiting our home and even using the toilet. 

Disclosure meant telling people it was ok to give our son a high five or even a hug. 

Disclosure meant telling people that if no one shared needles and everyone wore condoms, the condition he had would actually cease to exist. 

Disclosure meant telling people that we had checked a box on our application and chosen to adopt a child who had tested positive for the human immunodeficiency virus. 

*** 

It turns out, our participation in the club was temporary. The tests my son took as an infant were false positives- remnants of his birthmother's antibodies triggered the results. Once he came home we discovered that his immune system is actually ironclad, I've never met a healthier three year-old. 

The not-so-ironic part is that even though I'm not in the club anymore, my life doesn't look much different than friends who are. Sure, their kids take more medicine than mine - a cocktails of drugs tailored to their specific needs. They pop pills throughout the day, taming the beast in their blood. They visit big cities for doctor visits and get a few extra needle pokes to monitor their viral load, but they also have fantastic relationships with the best pediatricians in the world and they get extra stickers and lollipops. I'm not pretending like HIV is insignificant; left unchecked it is life threatening, but maybe it's not quite as big of a deal as people have been conditioned to think. 

When you spell out what disclosure actually means, it seems simple, straightforward, even foolproof. Having HIV is not the death sentence it was 25 years ago, at least not for Americans with access to appropriate treatment. But something is still lost in translation when those three letters are strung together - H. I. V. It may as well be a four letter word. 

I often share pieces of our story in an attempt to dispel the stigma. People gasp and laud me as a saint for adopting such a child, as if he's not quite human. They smile and nod, keeping their distance. They grimace just a bit when I indulge my son as he runs over from the playground and asks for a kiss on the lips or demands a Dusty Crophopper bandaid for his imaginary ouchie. All this after I have explained that he is actually negative. 

But people have also been incredibly gracious. They have asked questions and opened their hearts and minds. They have checked their preconceived notions and dismissed judgement. They've even become curious and asked how they can help, creating safe havens and layers of defense around families whose privacy still needs protection. They give me hope for humanity, that courage and compassion are stronger than fear.  

As an honorary member of the club, I get to speak out about HIV and lean in for my friends who can't. I have the privilege of advocating on their behalf- to make the world a safe place. And not safe because people are generous, but safe because it's really not that significant once you understand the facts. Someday the children of my friends and the friends of my children will be ready to disclose. They will be able to tell their best friends, college roommates, girlfriends, boyfriends, pastors, and co-workers that they are positive without judgement.

But until that day comes, until they transition from privacy to publicity, there is work to be done. There are stories to tell, there are facts to illuminate, there are rumors to discredit, and there is life to be shared.  


Guest post written by Holly Doden. Holly is the mama to two boys born six months apart- one homegrown and one through adoption. The combination of them, along with their papa, is a lot of loud with a good dose of crazy. They keep things lively and have taught her to wade through the complexities of life with a bit more compassion and a lot more grit. She blogs every once in a while on family and adoption at inthetimebetween.com