Thursday, August 23, 2007

The Cat's Outta the Bag!!! Disclosure Issues


OK, so I have been horrible about posting! This blog thing really doesn't come very natural to me. However, I think it is important to share the things we are going through. I know that when we were deciding whether or not we "could" adopt an HIV positive child, this series of posts from Erin, as well as this blog, made a huge difference in my mind-set. So, back to the grindstone.

As for the substance of this post - it's true. The disclosure has begun. Now the extent of disclosure (whether or not to share your child's health status with anyone) is a debate in and of itself and could take up MANY posts. I'm sure I'll revisit it later. For us, it was a huge roadblock in making the final decision to adopt an HIV+ child. We had to get comfortable with our disclosure decision before we allowed ourselves to commit to AJ.

What we decided was to tell immediate family (parents and siblings). I have also told two very close friends. for the time being, we are leaving it at that (hence the need for an annonymous blog). The reality is that no one really needs to know your child's health status (I mean I would exactly preach from the rooftops if Lulu were dealing with diabetes or something). But we are very close with our family and it was too stressful for me to consider not telling them. Additionally, given that AJ will be taking medicine the rest of his life, at some point it would likely come up and we didn't want our family to be hurt that we didn't trust them enough before to discuss the issue.

The cat started crawling out of the bag a few weeks ago. Drew's mom lives out of state, so every week or so they have a good phone chat. She was asking a lot of questions about different charities or programs that we've been involved with since we decided to adopt, including AHOPE. Well, this was too good of a segue to pass up, so Drew shared with her that AJ is positive. I think she was fairly surprised, but very supportive. She asked a lot of questions and in general just talked with Drew for awhile.

Not too much longer after that, we were headed 'home' to visit Drew's father, Andrew, and step mom, Tina. The 'news' was weighing on me a bit and Drew and I decided I should tell Tina that weekend. While her and I were out walking the dogs I just brought it up. No segue this time! And it was great - she just looked at me and said, well, that doesn't matter. =) She's great. Fortunately for us, while she was in hygiene school, she had done some research about HIV. Granted, it was a long time ago, but even from the out dated info she had, she knew that AJ posed no danger to anyone and would likely continue to do very well on his meds.

Last weekend we went camping with Drew's family and told his sisters. They were very supportive as well and asked a lot of questions. I really appreciated their open minded approach. They admitted they didn't know much about it - which is understandable, I certainly didn't! I also told Tina that the girls knew and we decided she should tell Drew's dad. We weren't scared to tell him - we just never had a good opportunity. And just bringing it up out of no where seemed to make it sound like some dirty secret that it isn't. I think he took it okay. Drew talked to him a bit about it the next day, but he didn't say too much. I think he is still processing it. He has concerns, understandably, most of them (I think) related to AJ's medical prognosis and how sick he may or may not be. After we got home from camping, I sent Drew's whole family some great resources (see side bar) which will hopefully help answer some questions that they may have.

So, all the sudden it ended up being my family that didn't know. At this point we were just ready to have it out in the open (well, with the family anyways). Since Lulu turns six today (yeah!) my parents are coming for cake and ice cream. So we were going to discuss it then. However, my mom called last night while on a walk and was talking to Drew, asking questions about AJ and his history. Drew brought the phone to me and said he didn't want to lie and I should probably just tell her now. So I did. And I think she was pretty surprised. but we had a great dialogue, talked about a lot of things. She was going to tell my dad last night. I don't think he will want to talk about it for awhile. I think they both have some processing they need to do. Drew and I have just moved beyond that - now we need to take a step back and walk through the scared feelings with our family. Help them understand why we made the choices we have.

After talking to my mom I talked to my sister. And it really bothers me that she wasn't one of the first to know. We have been incredibly close for a long time. I have wanted to talk to her, but preferred to do it in person and just have not had the opportunities this summer. At first she was really quiet. Which sort of surprised me. Out of everyone I hadn't been scared to tell her at all. But then I realized - she was being so quiet because she was crying. She was grieving for AJ - how unfair this world is that he would lose his mom and age 2 and be left with this disease. So we talked through some things. She doesn't feel any differently about it and was so supportive of Drew and I - which meant so much.

That leaves my brother. And I am REALLY unhappy that he is going to be the 'last' to know. We really want to talk to him and my SIL in person though. You see, they have agreed to serve as legal guardians for our children. So, our decision to adopt AJ really does have a more direct (or potentially direct) impact on them as compared to most people. I am not worried about telling them, I just feel I owe it to them to do it in a direct way. So we are trying to figure out when we can get away for dinner or something - hopefully very soon.

So that's it, our disclosure story. It's funny, when we first decided we were going to adopt an HIV+ child, we agonized over when to tell the family, how much, how many people to tell, etc. We knew everyone would be okay in the long run, but you just never know what someone's gut reaction might be? We discussed waiting until AJ was home - making sure everyone had fallen in love with him first. But that just didn't work for me. I'd rather be more upfront about it. And if someone really does have an issue, it needs to be dealt with before he can be hurt by it. I think we made the right decision. Last night it was honestly a huge load off. And it felt good to have people that love and care about us to talk to about the issues we are facing.

This too shall pass.