World AIDS day holds special meaning to me. It does because of my daughter and her HIV status. My journey with her has been long, interesting and has deepened me as a person. I’ve met so many courageous men, women and children–many of them living with the disease, and many of them helping those who do. I feel lucky to have walked this path.
My first real up close encounter with HIV was back in the late 70’s. I was living in an apartment within a huge old house in Connecticut. Still a college student, I was living off campus with the man who would be my first husband. There were three apartments in this house. The apartment downstairs was occupied by a female grad student in forestry and upstairs by a gay man who worked for the phone company.
We were all friends…like family really. Sharing meals, stories and life together. I was the youngest of all of them, so looked up to them. The guy upstairs would always relate stories of going to ‘the baths’ in Hartford where he would meet other men. None of us thought much of this at the time–not even him I imagine. AIDS wasn’t anything we really thought much about.
He ended up moving out to San Francisco–Connecticut didn’t provide a good lifestyle for him. We were happy for him and hoped he found happiness. He gave me a rocking chair and a sweater before he left. I lost touch with him and the gal that lived downstairs. But when the epidemic hit, I was always fearful of what became of him. He had been so vulnerable visiting those baths every weekend. I never did hear. But I have moved the rocking chair with me all these years…..
We were told when we adopted my daughter at 2 years old that she wouldn’t live past 9 or so. This was the life expectancy back then. She’s going to be 22 on December 4th. It was very hard at first. Even being educated, we were nervous bringing HIV into the home back then. I will admit it! She was two and I had a three-year old! But we learned quickly and it was fine.
It wasn’t easy for her as a little child: dragging around an IV pole, IV sticks all the time, blood work, constant doctors appointments, medicines. But she was a miracle kid with her viral load always undetectable! They just couldn’t figure it out. I always figured it was because she never paid any attention to it–never worried about it. Even now, her counts are still very good. Luck? Good genes? She doesn’t live in the greatest of environments now, or eat very well, but at least she had a good start.
I’ve been so fortunate to have met some amazing people along the way. The kids in clinic are so amazing. They have such spirit. They have been dealt a card and playing it like winners. And there was one Mom that became my friend. Her life was so rough. As a parent not only did she have to deal with the disease herself and the addiction that put her there, but also the guilt of passing it to her child! But she had the strength of 10 of me. She taught me a lot about addiction–something I needed later in my life when someone close to me was going through it. She said once to me, “There’s only one thing you need to change in your life when you’re addicted and that’s everything.” No truer words were said. I believe this woman is no longer alive.
HIV kept my daughter from going to a daycare where we had just moved. We didn’t want to make a fuss because we knew how these small towns worked. She ended up getting bussed somewhere great. Years later the same place (with new directors) offered a spot to my youngest daughter because they knew the story. Good karma. The elementary school started Universal Precautions because of my daughter too. We were vocal and open about her status to help educate people. Sometimes this helped, sometimes it hurt.
All in all, it has been an amazing experience. My daughter is an amazing spirit. It has been an incredibly rough road for her. She is mentally challenged too, so this makes it twice as hard. But she holds her head high and is proud of who she is and embraces all of herself. Sometimes I’ve had to tell her to be not quite as vocal! Now happily these kids from the 80’s are living long and healthy lives! It’s a manageable disease in this country, like diabetes.
A dear friend is in Africa with the Peace Corps doing AIDS work. It’s the other parts of the world that suffer still. We have come so far, but they have yet so far to go. Awareness is still not there. I am thankful to have been given the opportunity for this journey and when the call came to take a little HIV positive toddler in my home, that I said yes. I only pray the work continues in all parts of the world, and every woman, man and child gets the opportunity to live a healthy life.