Thursday, September 02, 2010

Telling family about HIV (our story)

The reluctant Grandpa with his new grand daughter

Someone recently asked me if I would share about our experience telling family and friends about Kendi's HIV status. I don't think we're much of an example to follow here. Our story is sort of a mess! But maybe that's reality for lots of folks? We had one plan when we went into Kendi's adoption and were at a totally different place by the time she got home.

We had been talking about HIV adoption for a few years by the time we learned about Kendi. I think this was of benefit to our family and friends because they already knew children with HIV could be adopted, and they had heard us say that the kids generally did very well. We began the process to adopt Kendi in February 2009.

Our plan at the start was not for Kendi's HIV to be a secret, but for it to be fairly confidential (parents and our two sisters were about all we planned to tell). Our parents were the first people we told--our guinea pigs! For both sets of parents the first hurdle was to accept that we would have four children. I don't think either set of parents was too keen on us "taking on more" with Eric's health issues. When we threw HIV on top of it, it was a little overwhelming for them--or maybe a lot.

Eric's parents are the type that do not feel they can say much to us about our decisions. They don't butt into our business. Because of this it was sort of weird. They didn't ask questions! In a situation like that we sort of wanted them to ask questions, but they didn't. Instead we got comments like, "If you're sure that's what the Lord would have you do..." or "As long as you've prayed about it..." or "Well, we'll just trust the Lord will heal her." I was ready to answer a ton of questions and "defend" our case, but that's just not how it went down with them. They never have asked questions, and because of this they still aren't very knowledgeable about HIV (for instance, maybe there are only cheek kisses for Kendi).

With my parents it was a much different story. My mom and I are super close and she doesn't hold back when she has concerns. Her top concern was for me. She wanted to know why WE had to be the ones to do this. Why did WE want to add a 4th child, let alone a child with special needs? My mom asked a lot of questions about HIV and read everything I sent to her. She's a learner, like me. Before long she knew in her head that HIV was okay, but she still didn't want our family to have to deal with the stigma of it. Even with her over-protectiveness, I knew my mom would be "all in" the moment she met Kendi. She's like that every time.
My step-father was very quiet about the whole issue. I made the mistake of assuming that he was sort of like Eric's parents--just figured it wasn't his place to have an opinion. After a few months we learned that in fact, my step-dad was very much against us adopting Kendi. Not only did we not need #4 (in his mind) but we definitely didn't need a #4 with "AIDS." In addition, my step-dad had decided that if Eric and I didn't tell the rest of the family HE would--in order to "protect" his children and grandchildren. He felt that he had a right to tell them.

As you can imagine, my step-dad's reaction was not okay. It was at that point that Eric and I are asking ourselves how we are going to respond and why we even told ANYBODY. After all, they should have seen it as a compliment that we shared this with them at all. He absolutely did not have a right to share Kendi's medical information with anybody else. And it was super sad that he didn't yet believe that she was of no harm to anybody. He had read all of the stuff my mom had. He just didn't believe it. He was stuck in 1989, along with most of the population of the world where HIV/AIDS is concerned.

What do you do at that point? This is when, as a parent to a positive child, you start getting yourself psyched up to potentially cut people out of your life. Eric and I felt (feel!) that if people refuse a relationship with Kendi, we must refuse a relationship with them. She comes first.

The whole time during Kendi's adoption Eric and I wavered back and forth about how open we wanted to be. I wanted to educate people about HIV. Eric wanted to protect Kendi's privacy. I wanted her to learn from the start that there was NOTHING for her to be ashamed of--no reason to keep a secret. Eric wanted her to learn from the start that nobody had a right to her private medical information unless SHE chose to share it.

The next widening of our circle of trust came when we shared Kendi's status with our sisters. My sister is an adoptive mom of a child with special needs. It was a no brainer that she would be on board from the start--and she was. Eric's sister (and her family) were MUCH more difficult. She was not immediately accepting and was very protective of her brother (Eric). Her main concerns were if Kendi could be a danger to Eric (no), and she didn't really believe the material we gave her. She found her own information that (she felt) indicated that Kendi could be a risk to Eric and our other children. I don't want to give the impression that we had some sort of fight with Eric's sister and her family. Not at all. It was just clear that not everybody was sold on the idea of Kendi.

So at that point, on both sides of our family, we were left with private discussions about the decisions we would have to make if people violated Kendi's rights or did not accept her. Not fun. Over the next months we kept educating...kept showing pictures...kept telling stories...even if they didn't want to hear it we kept talking and sharing.

We went to a church that was small and didn't practice universal precautions. Because of that we felt it was important to share with our pastor that Kendi was HIV+ and that the church needed to begin using universal precautions (they needed to do this anyway!). I won't go into that long story here, but in the end more people knew about Kendi's status than we intended. It was beginning to feel like EVERYBODY knew.

I'm just not a secret-keeper. And when too many people know a secret it's going to get out. It was at that point that we decided to share Kendi's status with my oldest step-sister. She is definitely the leader of my four step-siblings and I figured if she was supportive, the others would (at the very least) keep any negative thoughts they had to themselves. When we sat down to tell Amy she was like, "Oh, I know." What?! Well, she just figured that since we had talked about wanting to adopt an HIV+ child in the future that Kendi was HIV+. It was no big deal to her AT ALL.

With people at church knowing...people in the adoption world (rightly) assuming...and our immediate relatives having been notified, I no longer saw any reason to stay quiet on the blog. I "came out" on the blog (and facebook). My blog and FB are open to anybody in my family, so this was a way of telling them without telling them. It just became general knowledge, but at the same time nothing that we had to have a big meeting about. We never had an HIV discussion with any of our neighbors, friends, or extended family. It's not a secret, but it's not mentioned as a point of light discussion either. If they need to know (sleepover, babysitting etc.) we tell them. If not, we don't.

And my step-dad? Well, Kendi came home. HIV was no longer a "thing" to him. The face of HIV is now his granddaughter, whom he loves fiercely. He backed off of his plan to tell the rest of our family. We've never had another conversation with Eric's sister about HIV, but I know that she and her family also love Kendi dearly. There are probably still some misconceptions about HIV, which we address whenever they become apparent. Over all, Eric's sister would now be as protective of Kendi as she was originally protective of her brother Eric. =-)

That's our story with telling family about Kendi's HIV. It's not neat and tidy. It doesn't fit into a box. It all evolved well over time despite a few bumps in the road. We've not had to exclude anybody from our life and don't expect that will ever be the case. If we had it to do over again I think it might have been easier if we would have waited until Kendi was home and loved before we disclosed her HIV to our family. Then again, we would have lost all of those months during the wait when lots of hearts were softened. I guess it's just another situation where there is truly no right or wrong.


Cindy 9:14 PM  

Thank you so much for sharing this story Anita. I appreciate it very much!

Kait 5:45 AM  

Thank you for going through all this. One of the boys we're adopting is HIV positive and we've had a very difficult time with the issue of disclosure. We've kept his status private for right now, telling only family and asking our pastor "in theory" and so far we've had good questions and some concerns that we see as fairly legit. I'm sure there are things going on behind the scenes that we don't know about yet.

I don't know what the right answer is. On the one hand, I'm right there with you that my son shouldn't be forced to keep a secret like that. On the other, I'm with Eric in that it's HIS medical information and he has a right to share when and where he sees fit. It's complicated isn't it?

Ericka 7:32 AM  

Thanks for sharing Anita.
I think your family reacted very, very 'normally.'
HIV education is still very new especially with our parent's generation (lots of folks still stuck in the 80's).
But we in the adoption world 'get it' and am so glad your family has come on board :)

Teabo Chica 12:08 AM  

I am so proud to know you friend!
I hope I get the opportunity to visit you since I will be in the SOUTH and all :)!