Since opening up about my HIV status, I’ve answered a lot of personal questions. Questions I would’ve never answered just a few years ago. But I know that the road to ending the stigma and eventually ending HIV will take some discomfort in the form of me getting really personal. It’s the very least I can do I’m pretty much an open book and answer every question with ease.
Except one: “What was it like getting your kids tested?”
It stings and feels like a punch in the gut every time I think about it. And honestly, it’s a question that comes in many different ways and forms. And no matter how nicely the person asking it puts the words together to cause me the least amount of harm, it’s still one of the hardest, if not the hardest pill to swallow regarding my HIV story.
But, it happened. It was part of the process for ensuring their health. But it was never ever easy.
I mean, who likes having a needle in their baby’s arm?
The truth is, the thoughts of shame everyone with HIV can experience came at me strongest when I was pregnant and when I stood over my babies as they were getting their labs done.
I remember putting my oldest son (he was about 2 months at this time) back in a sling against my chest, kissing his forehead and apologizing into his ear over and over again as I walked back to my car from the second floor of the clinic. He stopped crying and was asleep by the time I hit the down button at the elevator, but I remember feeling like the world’s worst and most inadequate mother. I felt like I was sneaking around with a child I didn’t really deserve as I walked the long sidewalk to my car, praying no one would “find me out” and take him away. (Repeat that for each test, for each of my 3 children). Those were irrational fears of course but shame and guilt can and will do a number on you, especially when you’re only 8 weeks postpartum.
I went back home and put him down in his crib, apologizing again to my sleeping baby. I walked into the dining room and sat down at my computer to work when I remembered the summers I worked at Scottish Rite Hospital for Children. Seeing children day in and day out face unthinkably scary procedures, being hooked up to weird contraptions, and the dreaded screaming we’d hear from the lab. Those poor babies hated those few minutes in the lab getting blood tests but were totally fine and all smiles by the time they walked out and went back on to their lives. Children are resilient. And frankly, I really doubt my children will even remember those lab visits.
But it doesn’t make it any easier for me. I remember every minute of those lab draws the way I remember every minute of their labor. And as it is with memory recall, all the shame and guilt flood back when I remember their discomfort and tears. The only solace I feel is knowing that they were always either undetectable and ultimately HIV negative. All the pain and heartache was worth it to know they were going to be OK, and that we, as a society, have reached new milestones in this fight against HIV.
So to answer that question, the one that comes in different forms…
What was it like? It sucked. I hated every second of it. And I’m glad it’s over and that they’re healthy. And I have to fight the urge to spoil them with treats, toys, etc. to make up for that shame and guilt I feel about the tests. It’s a process.
Very few babies are born with HIV in the United States. That isn’t the case around the world. Due to lack of prenatal treatment for expectant mothers, and stigma, and missed diagnosis, children in countries like Mexico, Haiti, and India for example are born. There are lots of children living with HIV in these countries who many time, unfortunately are abandoned by their families due to stigma.
Thankfully, there are beautiful people out there helping them out. I’ve listed a few organizations helping children living with HIV below, please take a moment to donate to help continue the work to provide these children a loving healthy environment to flourish and grow to be adults who see the cure to HIV/AIDS!