By an Adopt4Life Member
My husband and I have been together our whole adult life. As far as I can remember, we always talked about adoption and caring for vulnerable children. After having biological children, it felt like the next coherent thing to do would be adopting. To us, adoption should never be seen as a second option, it’s a legitimate and wonderful way to grow a family and provide loving parents to an orphan. This is what led us to adopt a girl with special needs. The process to bring her home and to care for her was challenging and many times draining but it was also very rewarding. She is a wonderful child and an amazing addition to our family. When we were in her home country, we met another couple that were adopting a child affected by HIV. They were really open to disclose and discuss it. To be honest, our first reaction was fear and many questions followed… What about their other children? Is it safe? How long will he live? Does he take like 30 pills a day? What about side effects? Our knowledge of it was way out-dated and we needed to be educated on the subject. Through our discussions and some reading, we learn that people with HIV can live a long and happy life. The medication is not what it used to be and it’s actually hard to catch so there is no worry for friends and family members to get infected through day-to-day activities.
After our adopted daughter, M. was home for about two years, we decided to extend our family again. Not that this was our life plan, but seeing the difference it made for her helped open our hearts to welcoming more children. We knew HIV positive children don’t often find a permanent home and we felt that this would be doable for us. We proceeded to adopt siblings who are HIV positive, they had lost their parents to AIDS. To be honest, I wasn’t that worried about HIV as much as the trauma they have been through, and how it would affect their attachment style and their behaviour. Now, our children have been home for more than a year. The attachment process went really well. They are very well behaved, polite, get along with their siblings, doing well in school, making friends and they are extremely cute (I wish I could post a pic!). Our children take two pills in the morning and two at night with their meals. It’s just part of our routine and we don’t find it difficult at all. They don’t complain about it and honestly have no side effects from them. We remind them how important this is for them to stay healthy and that means taking their meds everyday. We told them that they have a disease but it’s sort of sleeping in them so it doesn’t make them sick but if we want to keep it sleeping, they have to take the meds. At first, I was worried it would be very complicated to carry and give meds everyday but we kept the same lifestyle, in fact, we are a family that’s always on the move, we travel, visit friends and family, go camping, etc. Meds have never been an issue. They are regular children in everyway, they take music lessons, play hockey, ski, do swimming lessons, play with friends and go to school. The main difference is that they take meds!
Disclosure and stigma
When we chose to adopt them, professional advice on disclosure had not been given to us. My hubby and I felt like ending stigma starts with education and being a voice for HIV positive people. We also felt like we would have never done it if the couple we met didn’t choose to disclose to us, and to take the time to educate us about HIV adoption. So, we did share the information with our close friends and family members. Unfortunately, not everyone warmed up to the idea, even after they received scientific information to help alleviate their concerns. A family member chose to not let his children in the presence of our children. This was quite a lesson. We now choose to talk to each other before we decide to disclose. Not only do we want to avoid that kind of situation, but we also want to respect our children’s story. Now, I always advise prospective adoptive parents to keep their children’s story confidential, it belongs to the child and he should be the one choosing who he wants to share this with. Not only for a medical status but also for their abandonment, biological family information, past abuse, etc. Feel free to let professionals (unless it’s relevant to their treatment), strangers, friends and even relatives know that this is very personal and when the child feels ready, he can decide who he shares his information with. People tend to be very curious with adoption but you and your child have the right to privacy.
What is hard for us too, is hearing people discussing the disease either in person and in the media, and the information they are sharing is not always accurate and up to date. It’s still seen as a death sentence and something that can be transmitted easily. There is still pervasive stigma around it, and the judgmental comments we hear from people is often very hurtful. It is a concern for us that our children will hear these comments growing up and feel ashamed. Our hope is that every HIV positive person (regardless of how they got infected) get medical treatment but is also treated with the compassion and respect they deserve.
As for the medical piece of it - we have follow-up appointments every three months. They can last for about three hours. At first we had many appointments, as the children needed medication changes and many other tests that were not related to HIV, but from coming from a neglectful environment. Our team was very welcoming. They have a multidisciplinary team in charge of our case. I had MANY questions the first few months, I didn’t always feel competent to care for them appropriately and just wanted to make sure I do the right thing. The nurse was very kind and was always available by email to give me directions. One thing for sure, you are not alone with this, the team is quite available for you. In my case, I’d say that in a way it was sort of overwhelming to add such a big team to our family as we had many professionals already involved. Among things to consider, and it goes for any special needs adoption, when you choose to welcome such a child, you also welcome many professionals in your life. They are strangers, that you have not chosen, they may not think the way you do and many of them unfortunately, are not educated to appropriately help adoptive families. That said, we had many very helpful and supportive people to help us along the way and we couldn’t make it without them. But just remember that you will have to be open to let other adults have an impact in your child’s life and you’ll need to be flexible to adjust to whatever will come along as your child enters the teen years. Feel free to find the right professionals and supports for your unique family and remember that you are in charge, you love your child most and you know better than anyone what’s best for him/her.
I often read articles on the advancement of HIV cure and treatment. To be honest with you, I’m not someone who over thinks about cure… I have other children who live with much more complicated disability for which there will never be any healing. Cure or not, our HIV positive children have the same life expectancy as any healthy individuals, they can achieve their dreams whatever they will be; find a spouse, have a career, travel and even have non-infected children. Our children have a wonderful life ahead of them and we are truly blessed to be part of it.
May your choices reflect your hopes not your fears.
-- Nelson Mandela