September 9, 2013
September 9th is the 21st anniversary of the day I became infected. That means my virus is legal now. It's time for it to grow up and face the music. It should realize by now that I am a fighter -- with or without my HIV drugs I intend to survive day by day, week by week, month by month and yes, year by year. We can peacefully cohabitate until a cure comes as long as it agrees to behave. If not then I will continue to launch an assault every time I get a new symptom until I get my body back under my control. 21 years or not, I will never let this virus get the upper hand.
I usually do something to mark my anniversary. It's never anything big or extravagant, it's personal and intimate. Sometimes I involve my family or closest friends, most times I don't. I learned a long time ago that this anniversary is mine and mine alone. So this time since I am a blogger for all of you, I decided to share a piece of my heart and tell you about one of my three amazing kids who has a story all of her own. I have to withhold some details due to her desire to remain partially anonymous but nevertheless let me begin.
Ashley is our middle child and our only daughter. She was born in Baltimore, Maryland. My husband and I got the phone call from the adoption agency that there was going to be a baby to be placed for adoption being born in February whose mother was very sick with AIDS and she could not keep the baby. The adoption agency immediately thought of us for a few reasons. We had just submitted our paperwork telling them that we wanted to adopt again as we had successfully adopted a baby boy 18 months prior through them, we had disclosed my HIV status to them, and with my nursing background they thought we would be a strong fit for this soon to be born baby girl.
We of course agreed. We settled in for the wait. The process was a closed adoption. My husband and I didn't waste too much time worrying about all the what-if's; we had our hands full raising our son David and just living as newly married young parents. To our surprise, we got a call one day in December that the baby had been born and we needed to come immediately to the hospital to collect her and take her home to Pennsylvania. We were shocked! Not only was she two months premature, she weighed 4 pounds and they basically were kicking her out the door! We rushed to Baltimore to see our new daughter and now we started to panic. What had we done? Could we handle this? what if she had AIDS? How were we going to get through all of this?
When we got to the hospital, all we saw was this tiny, shriveled up little baby that needed love. David spoke his first words: Ah-lee. We knew then. She was our daughter! Mom had held her and said her goodbyes. She had given birth with a vaginal delivery. She was in full-blown PCP pneumonia and was not on any HIV drugs at the time of delivery. Things were little different back then as far as testing for the virus. They could only test for the antibodies. So we knew that Ashley tested positive for the antibodies but we didn't know what that meant as far as the virus was concerned. She was sent home with us on AZT. Her vitals were all stable. Her reflexes were good. Her breathing was normal. She was just this skinny yet long little premature baby who from day #1 captured our hearts and souls.
We were told Ashley's chances of having HIV were 50-50. We began our new lives and loved her as doting parents would. She met all her developmental milestones and thrived. When she was 18 months however she developed double pneumonia and required a 5 day stay at the Children's Hospital in Philadelphia. We were beside ourselves with worry. Our entire community of friends and family prayed for her speedy recovery. Luckily for us by this time in 1997 doctors were able to test for the actual virus. Ashley finally tested HIV negative. The pneumonia was caused by a very common childhood virus: RSV pneumonia. We were elated with joy as we watched our baby girl recover.
Our joy soon turned to worry again when we realized that Ashley's adoption was not yet final and with her now being HIV negative perhaps the mom or dad or extended family would push for the return of the child. At this point in time I was very public with all my speaking and traveling and so we did our best to keep Ashley out of the public eye. We never discussed her story or gave away any identifying details. Each night we worried. More so than worry, I felt a twinge of pain every time I thought about how I was going to explain to Ashley when she got old enough to understand that her birth mom with HIV couldn't keep her but her adoptive mom with HIV could. What did that say about stigma? What did that say about our health care system? Poverty? Discrimination? Access to care? I really was torn and at odds with how I would make heads or tails of this for my daughter when the time came to explain all of it.
Finally when Ashley was two years old, her adoption was finalized. She had been ours since she was 4 days old but the judge officially made her ours at age 2. That was a very long and arduous two years but the wait was well worth it! Ashley has been the joy and the light and the laughter in our lives for 16 years now. She is a gifted triple-threat performer who plans on a professional career as a performer eyeing her spot on the Broadway stage. She has now begun to ask questions about her birth family and the circumstances surrounding her birth and I have been extremely open with her, as open I as can. I don't have the details she seeks as far as information that would help her locate her birth family but have promised her at age 18 I will help her look if she wants to. She seems unsure if that's the angle she wants to pursue right now. I have explained about HIV and AIDS and that we really don't know if her mother is alive and well or if she has died from complications from AIDS. She has asked me some tough questions and I have not been able to answer a lot of them.
What I do know I have shared with her. I have told her that she as my daughter is one of my most treasured gifts. The HIV virus brought her into our lives. I am thankful for that gift each and every day. Without it my life would be empty and seem devoid of joy and laughter. Celebrating my 21st anniversary by remembering her adoption story and triumph over AIDS seems like an appropriate way to say to the virus thank you for bringing good things into my life; I will accept and cherish such gifts. There have been many such treasures in my journey. If I stop and reflect on each one then my heart overflows with thanks and gratitude. Ashley has learned to do the same and it will help her on her own journey into both the past and the future as she explores her own triumphant story.
Until next time ...