A Big Huge Thank You

Disclosing your HIV status is a hot topic among people living with HIV.  There are a lot of very firm opinions on the topic, and they are all very valid.  It is a risky thing to let anyone know your status, because once that person knows you have lost control of who else they tell.  I have been shocked at the discrimination, hatred, and ugliness that have been poured out on people simply because they carry this virus.  Stigma is hard to fight, especially when people are not interested in educating themselves.  They prefer to just keep "those people" out of their world.  I have heard enough personal stories about how disclosure has gone badly to know that what we have experienced is exceptional.

I want to say publicly to my friends and family and community, you all rock!  You have treated us like normal people and made our HIV status the least of our problems.  We have not had one ugly comment from anyone here.  That is flat out a miracle.  I had prayed that we would be able to deal with people treating us badly, and God answered my prayer above and beyond anything I had hoped for.  I have had the opportunity to explain what HIV is and how it is being managed to all kinds of people in a very open and non-judgmental way.  It has been a blessing to me to have nurses ask me to explain to them how my son could be healthy and not on medication.  Even the nurse who was obviously uncomfortable taking my child's blood, was happy to refer us to the hospital, where they didn't bat an eye and had us taken care of in less than 15 minutes.  I get her discomfort.  I was there once, and I didn't feel like I needed to push that.  Most people who are hesitant at first will ask a lot of questions.  Some go home and do some research, but not one has treated us like "other" in the end.

I have hesitated in conversations with other HIV families to admit that we have been very open in our disclosure.  Most families are not open, for very good reasons, and I respect their position.  I just wanted to throw out a positive story on open disclosure.  I also realize that this may be an opportunity for me to eat every word if I get some negative backlash from this post.  All I have to say there is, "bring it on."  I realize now that I have been completely reckless in our disclosure.  When we brought our first child home he was too young to be part of the discussion, which I should have thought more about.  He will be a teenage boy someday and it may be much harder than I ever thought it could be.  The blessing there is that I have met many boys and men that have been down that road.  I know who to call when the ride gets bumpy.  When we brought home our second child she was old enough to have an opinion, and she thought we were nuts.  The cat was pretty much out of the bag, so we couldn't really take any of it back.  This morning I asked her if anyone had ever said anything ugly to her about HIV.  She said, "no."  For that we are both extremely grateful.  She has had the opportunity to tell some kids her age what HIV is and how she deals with it.  It has been very freeing for her.  I fully admit I was foolish, and you all were unbelievably gracious.  Thank you.

This is another of those "on earth as it is in heaven" situations.  Our house is a stigma free zone.  We have our meds sitting on the counter and we talk about doctors, medication and blood draws like they are normal everyday things.  When other positive folks are at our house, they get treated just like everybody else.  We have had some fantastic table discussions that have been part of our children's healing.  They feel normal when they find out other kids have lost parents, taken meds, had regular doctor visits, and still live life.  It has helped me to look at "normal" in a whole new light.  I have to remember when I am at other people's houses not to be quite so free in my conversation.  We banter about it sometimes in code so others don't know exactly what we are all talking about, but sometimes I say something a little too real and my kids have to elbow me.  I forget that not all of our friends are in on the story.  When we are in our community though, everyone has been unusually gracious.  I really want you all to know that we recognize that you have extended us great grace and we appreciate it.  I would encourage you to do this more and more.

I know that there are some folks in our midst who have special needs that are more obvious than ours.  Sometimes we don't know how to approach someone who doesn't talk well, or can't move around as easily.  I would encourage you to approach them and start a conversation.  It can be very isolating to be the one who doesn't look like everyone else.  Many of these folks have family around and may appear to be just fine.  Ask them if they need anything.  Better yet, invite them to dinner and get to know them.  Treat them like they are normal as much as you can.  Don't be afraid of looking foolish, they feel like they look foolish most of the time.  Get into their world.  People who live in different worlds than we do bring us a new perspective on life.  They will make you enjoy the sunshine just a little bit more.  I am so grateful for all the hard times we have had over the years with our children.  They have made me a better person, even though they have been hard.  All of you have walked down this road with us and blessed us in a million unnoticed ways.  Thank you for your friendship and you willingness to love us where we are.