Amy's Journal

I took one of my positive kids to the dentist today. During the course of our conversation, I discovered that our hygienist was friends with my daughter's pre-school teacher. I am sure it will be fine and that the hygienist is well aware of disclosure laws, but these are the sort of interactions that make me nervous. Our doctors and dentists know our kids are positive,of course, but I do not disclose to my kids' school, and the last way I would want them to find out is through the rumor mill. In fact, this is the reason many parents choose to disclose their kids' status themselves - out of fear it will come out any way at some point by chatty medical professionals or family members.

I had similar anxiety when the same child had a minor medical procedure done and had to spend some time in the hospital. We did not have a private room and the doctor was not at all discreet in the way he was asking me about my child's medical history.

It is very frustrating to me. I feel like it is important for me to let my child make her own decision about whether and when she wishes to disclose her status. I hope her right to make that decision for herself is not taken away at some point due to someone's carelessness.

Hi! I am Amy. I am an adoptive mom in my early 30s. Two of my three kids are HIV+. My husband Ben and I adopted after several years of infertility and miscarriage. Like a lot of women who go through the infertility wringer, I got a little baby crazy by the time I was ready to adopt. I wanted a baby – as healthy and as young as possible. Every parent who adopts has to fill out a “Conditions Checklist” of what they are willing to consider. It is basically a laundry list of medical, psychological, and social issues that could potentially be a part of a child's record. Prospective adoptive parents check “yes”, “no” or “maybe” to the conditions listed. The first time we adopted, we had very few “yeses” checked. We truthfully did not really even consider many of the conditions listed. The first child we were matched with was “healthy” but turned out to have significant unexpected health issues. We were heartbroken and scared for her, but never considered turning down the match. Ultimately though it was not up to us and we did not get the chance to parent that child. Still, she changed us forever. Without her, I don't know that we ever would have stepped outside our narrow image of what we expected our future family and children to be like. We were matched with another child soon after that and I brought home my healthy infant, Calie – who continues to be healthy but is a definite handful these days!

I don't know exactly when I started learning more about HIV, but it was gradual and not initially a conscious effort. Over time, we met a few parents of HIV+ children, and later their healthy, happy, thriving kids. I started reading the blogs of families who had HIV+ children or who were in the process of adopting HIV+ kids. I learned that having a child who was HIV+ in my home was not a threat to me or my negative child, or anyone at school or that she played sports with. I learned that while it is a chronic disease and that the medications can have significant side effects, it is manageable with medication and most kids can be expected to live full lives. Then I began consciously researching it. Besides surfing around the web, I called a local pediatric infectious disease doctor's office and spoke with a nurse there to gather more information. I called a local HIV advocacy group as well. My husband and I both grew more and more comfortable with the idea. When we learned of two waiting HIV+ but otherwise healthy and adoptable children, we did not hesitate. We called the agency and got the paperwork together at lightning speed. A friend once said to me that she thought that after all we had been through trying to have a “healthy” child and all that fate had thrown at us unexpectedly, there was probably something very liberating about embracing something the rest of the world thought of as “risky”. I didn't think about it that way at the time, but in hindsight I believe she was right. I am not a religious person in the traditional sense, but I have never been more certain that I was on the right path than I was while I was in the process of adopting these children.

My HIV+ kids have been with us for less than a year, but they have settled in well. HIV really doesn't affect much of our daily life, other than the fact that one of my kids (Dinah, who is in the first grade) has to take two medicines twice a day. She gets motion sickness sometimes, but otherwise has not had significant side effects or any illnesses since she has been in our care, although lately her CD4 count hasn't been where we would like it to be. Emily is in preschool and is also HIV+, but her immune function has always been great and her viral load has always been low, so she has not yet required any treatment at all. She just gets regular labwork along with her sister to make sure that her viral load is still in check. Mostly what I worry about is stigma and disclosure, and I think about that a lot each day. We keep our kids' status mostly private so we haven't notified the school, extended family, the kids' friends, etc. I imagine I'll have a blog post or 40 about that it the future...