Hey you guys! Since I don’t have a current spotlight I’d like to post another oldie but a goodie. I have so many favorites, and this one is up there. Trust me--worth the read. Original post here. Also, here’s a fun little clip to start your Friday off right! Have a great weekend!
Hi Friends, Miggy here. So my church isn't one of those churches where you raise your hand and yell Amen! but that's exactly how I felt while reading through today's spotlight with Isabelle and her husband Pedro who adopted two children with HIV. This spotlight is full of education and truth telling. And while HIV isn't something that typically falls under the term of "special needs" it is certainly outside the parenting norm and something we desperately need an updated education about. Because of the nature of today's post (and you'll understand more as you read through) Isabelle has chosen to keep her family's identity completely private, thus all the names have been changed and there are no family pictures. Enjoy.
Hello everyone! My name is Isabelle, and my husband Pedro and I are the proud parents of two amazing children, Selena (13) and Michael (10). Both of our children were born in Ukraine and came to us through the miracle of adoption. We met Selena in November 2013 and brought her home in late December, just two days before Christmas. Less than a year later God called us back to Ukraine to adopt Michael. We met Michael in early December 2014, had court the day after Christmas, and came home at the end of January 2015. We’re now in the midst of post-adoption adjustment as we all get used to life as a family of four. Despite our multicultural origins – Pedro is from Guatamala, both kids are from Ukraine, and I’m from rural VA – we’re mostly a typical, fun-loving American family. However, like all families, we have our own unique challenges. In addition to the challenges our children face because of their traumatic pasts, both of our children are living with HIV.
Miggy: Isabelle thank you so much for being with us today and for sharing your family’s story. I am so grateful that you emailed because I think this is a very important topic that needs more education and awareness. You have 2 adopted children both living with HIV. Can you take us back to the beginning of this process and your decision to adopt children with this disease? Was it an intentional choice to adopt children with HIV and if so, why?
Isabelle: From the time I was a small child, I knew that someday I wanted to adopt. When Pedro and I got married, we began looking into the foster-to-adopt process. But despite our best efforts, we had more doors slammed in our faces than I can count. After hearing “no” on every side, we put kids and adoption on hold to focus on our careers, figuring God would work things out in his timing.
Several years later, I felt God calling me to orphan ministry. Because our past adoption efforts had not panned out, I decided to look for ways other than adoption that I could help orphans. I began volunteer advocacy work with Reece’s Rainbow, an organization that promotes and raises money for adoption of international orphans with special developmental or medical needs. In the course of that advocacy, I came across a photo of a beautiful brown-eyed little girl and her younger brother. I knew right away, in a way that I cannot even begin to explain, that these children were supposed to be our children. I showed the photo to Pedro, and he had the same reaction. At that time, we had no idea where these children were, but we knew we needed to do everything we could to adopt them. We asked the necessary questions, and just a few weeks after seeing their photo for the first time, we committed to adopt both children. Eight months later, we came home with Selena, our spunky, friendly, funny, exuberant, inspiring daughter. Unfortunately, due to a tragic circumstance related to the intricacies of the Ukrainian adoption process, we were not able to adopt Selena’s younger brother, but we are so blessed by Selena’s presence in our family and so glad God led us to her.
Selena’s diagnosis of HIV was truly an afterthought to us and had no bearing either way on our choice to adopt her. When we first saw her picture, we had no idea what her special need was, and it didn’t matter. We of course learned that she had HIV before we made the decision to pursue adoption, but I can honestly say that her diagnosis played no role.
That said, we went into the process eyes wide open. We did our research about HIV before committing. At the time, Pedro worked with a man who is living with HIV, and we took him out to dinner so we could have a frank discussion with him about what it means to live with HIV and what it might mean for us to parent a child with HIV. We also had long discussions with my mom, who was a nurse during the beginning of the AIDS epidemic in the 1980s. We read everything we could find about the care and longterm prognosis of people with HIV. (Project Hopeful, is a great resource.) We talked to the international adoption specialist at our local international adoption clinic. We called our insurance company to make sure we had adequate coverage for HIV medications. We did everything we could think of to prepare for the reality of parenting a child with HIV. But not once did we consider that we shouldn’t go through with it because of Selena’s diagnosis. We knew she was ours, and that was all we needed to worry about.
Our path to adoption of Michael was a bit different since we went into his adoption already knowing exactly what parenting a child with HIV entails. Early on, Selena requested that, if we adopted again, she wanted her new sibling to also have HIV. When we felt God calling us for another adoption, we prayed daily over the children on Reece’s Rainbow who have HIV. Eventually we felt our hearts pulled to Michael. When we found out that he is from the same Ukrainian city as Selena, we knew this was the little boy God wanted us to call our own. Eight months after coming home with Selena, we committed to adopt Michael, and we came home with him just a few months after that. In Michael’s case, I guess you could say we chose to adopt him in part because of his HIV. Rather than his diagnosis being a deterrent to us, his diagnosis is what originally brought him to our attention!
Miggy: HIV has changed a lot of our lifetime. It went from being a death sentence and extremely feared in the 80's to being something that people are living with and managing quite well. But to be honest, I still don't know a lot about the management, life expectancy and day-to-day challenges of HIV. Can you bring us up to date on living with HIV in America today, including HIV vs. AIDS?
Isabelle: When people hear about "HIV" today, the images that come to mind are tragic photos, most of which were taken in the 1980s, of deathly ill AIDS patients lying in hospital beds. But nothing could be further from the truth. The modern face of HIV instead looks like the faces of my children: healthy, happy, joyful. A diagnosis of HIV means only that a person carries the Human Immunodeficiency Virus (HIV) in their blood. It is a virus notoriously good at hiding out in the body. Even if only a single virus is left in a patient's body, in the absence of medication, that single virus will reproduce and come back with a vengeance, thus the necessity of daily, lifelong medication. AIDS, by contrast, is what happens when the virus is allowed to reproduce at will and attack the patient's immune system. It is a syndrome, the Acquired Immune Deficiency Syndrome (AIDS) to be exact, which occurs when the virus interferes with the immune system enough that the patient starts getting sick from every infection or illness going around. When the immune system is so weak it cannot fight off other viruses or infections, the patient very well could die. But because AIDS is an acquired syndrome tied directly to the number of HIV living in a person's blood, it is a fully reversible condition. If a patient suffering from AIDS is able to begin taking medication and reduces the number of viruses in their blood, their immune system will rebound, coming back just as healthy as before the AIDS incident, making that patient a run-of-the-mill HIV patient once again. That's not to say it's a good idea for an HIV patient to go off meds and deteriorate into AIDS. Many of the infections and diseases people get when their immune systems are so weak are incredibly dangerous infections that often have lasting effects on a patient's health, completely separate from the HIV/AIDS diagnosis. But as treatment of HIV has improved drastically over the years, so has AIDS treatment. In America today, HIV is a manageable chronic condition, and AIDS is a serious but treatable illness.
Medically, living with HIV in America today is easy. To be honest, I deal with chronic migraines, and I have more trouble managing my migraines than either of our children have with their HIV. For Americans living with HIV today, the diagnosis mainly means taking medicine, usually just one pill once a day, and seeing an infectious disease doctor three times a month to check bloodwork and liver function. Selena is down to one pill a day, after taking 11 pills a day in Ukraine, and she couldn’t be happier about it. On her 13th birthday, she finally finished her medications for nutritional deficiencies and was left with just her single HIV pill to take every day. My, what a day of celebration that was!
As long as people living with HIV take their medication every day, the HIV diagnosis has very little impact on daily life. The goal of any patient with HIV is to become “undetectable,” meaning they have so little HIV in their blood as to render the HIV undetectable to even the best of modern tests. For the average HIV patient, simply taking medication every day without ever missing a dose is all it takes to become undetectable or close to it. When the level of HIV in the blood is that low, the HIV diagnosis has absolutely no effect on a person’s life expectancy. What’s more, thanks to the miracle of modern medicine and the huge strides that have been made in reproductive treatments available to individuals with HIV, Selena can someday bear and give birth to children without fear of passing on her HIV to them, and Michael can someday father children without giving HIV to his children or to their mother.
When a person is taking their HIV medication as prescribed, the chance of accidental transmission of HIV to another person is virtually eliminated. In fact, in the entire history of HIV, there has never been a case of accidental transmission of HIV within a normal household setting. In other words, because my children are on medication and understand the importance of taking that medication, and because they understand the risky behaviors they must avoid (namely unsafe intercourse, intravenous drug use, and breastfeeding), they will not ever be negatively affected by their diagnosis beyond needing to take daily medication, and they do not pose a risk to the people around them.
When I think about what all this means for my children – what modern medications have made possible in terms of HIV therapy – I am overjoyed. A disease that would have been a death sentence to them even 15 years ago is now little more than an annoyance. What a miracle!
Unfortunately, good news stories don’t usually make good headlines, and many Americans today are woefully ignorant of the strides that have been made in HIV therapy. Many people refuse to believe that someone living with HIV is not a threat to their own personal health. In America, the stigma faced by people with HIV today is only marginally better than it was in the 1980s and 90s, when HIV was a death sentence.
Miggy: In your email you talked about the stigma your children lived with in their home countries. How does that differ from America? More importantly how have those stigmas and the social scrutiny impacted your children and are you doing anything to help them overcome/deal with those painful memories.
Isabelle: For people living with HIV in Ukraine, you can ignore everything I answered to the last question. All four of my children’s birth parents died from AIDS. In Ukraine, treatment advances don’t exist, and HIV/AIDS still kills. In Ukraine, people have a very good reason to be petrified of HIV.
Even in America, HIV medication is extremely expensive. Thankfully, America provides numerous supportive programs to help people with HIV afford their medication. (Between our insurance and available co-pay assistance programs, we pay nothing for our children’s medications.) This couldn’t be further from the truth in Ukraine. In May, NPR presented a focus story about the poor state of HIV therapy in Ukraine: Corruption in the Ukraine Robs HIV Patients of Crucial Medicine. The gist of the situation is this: corruption within the Ukrainian medical system takes medication costs that would already be prohibitively expensive and puts them far out of reach of most patients. On top of that, the HIV/AIDS epidemic in Ukraine is one of the fastest growing in the world. In America, the stigma faced by people with HIV is based solely on ignorance. In Ukraine, that stigma is based on ignorance combined with pure terror.
Selena has memories of being barred from interacting with “healthy” kids. Even though HIV isn’t found in saliva, the silverware and bowls for children with HIV were marked with red dots on the bottom, and the children with HIV were only given those chipped and broken tableware and silverware items after they were too badly damaged to be used by the healthy children. Selena has memories of friends abandoning her when they found out about her diagnosis and teachers ignore her because of her status. When Michael’s birth mother passed away from AIDS when he was a toddler, Michael was placed in an orphanage for children with severe mental and physical handicaps, even though HIV is his only “handicap.” The orphanage workers never explained why he had to live by the same restrictions as children who couldn’t walk or talk. Despite the fact that his HIV level was almost undetectable even while in Ukraine, he wasn’t allowed to play any sports for fear he might infect a teammate, which is virtually impossible when a person’s viral load is undetectable.
All of this is in my children’s past, and these viewpoints inform how they view their diagnosis today. The culture of fear, shame, and paranoia that surrounds HIV in Ukraine is extreme. It's a daily struggle to teach them that their status does not define who they are, what they can do, or who they can interact with. Even in America, the stigma surrounding HIV is such that many families with children living with HIV, including our family, choose to be non-disclosing, meaning we have made a choice that our children's status will only be disclosed to those whom we must tell by law. Disclosure vs. non-disclosure is a huge issue in the HIV community, and strong feelings fly on both sides of the issue. After much thought and prayer, non-disclosure is where my family has landed.
Not a day goes by that I am not grateful we made the decision to stay silent about the exact nature of Selena’s special need during our pre-adoption process. While I don't think she would face quite the level of stigma here in America that she faced in Ukraine, it has been amazing to see her relax and grow, confident that people are interacting with her for who she is rather than rejecting her because of a virus that happens to live in her blood. Even after less than a month home, Michael too is already showing the benefits of finally being accepted for who he is – an energetic and rambunctious ball of fun – rather than always being stifled because of fears related to his diagnosis.
That said, it is admittedly quite difficult to teach Selena and Michael that their diagnosis is nothing to be ashamed of while also explaining that only our doctors and closest family members know about it. I’m still not sure I’ve figure out quite how to walk this fine line. It’s something I pray about and think about on a regular basis. Because the stigma surrounding HIV in America is based solely on ignorance, I often feel that nothing will change unless families like ours take steps to educate those around us. But then I remember all my kids faced in the past because of their diagnosis and all of the struggles they still face simply because they are adopted. Perhaps they have enough to deal with by being international adoptees. Perhaps their priority right now should be healing from the numerous traumas locked away in their pasts, both those related to HIV and those that come simply from being orphans. When I’m being honest with myself, I have to recognize that they are dealing with enough; they do not need the added burden of educating everyone they meet.
Miggy: In addition to being HIV positive, your children were also adopted at an older age. How have your children and you adjusted to this? What would you like everyone to know about adoption and especially the adoption of older children as I believe there are some stigma's attached to that as well?
Isabelle: Adoption is only possible because of great loss. My gain – the blessing of two amazing children – was only possible because those same two children experienced more trauma, grief, and heartache than most people experience in their entire lifetimes. To ignore that loss is to ignore the incredible challenges my children must overcome to fully accept me as their mother.
My biggest advice to anyone considering adoption, especially adoption of an older child, is to go into it knowing about the worst case scenarios and being determined to stick to your commitment, to stay with your child, even if your own adoption experience ends up mimicking one of those worst case scenarios. Adoption is hard, REALLY hard. The adjustment period post adoption, which usually lasts about a year but can last much longer, feels like a never-ending slog through someone shredding your heart and stomping on your emotions every single day. We’re still very early in Michael’s adjustment to life at home. While he’s doing extremely well considering his brief time home, there are still days when this raw pain is my reality.
The deaths of both parents do terrible things to children. Institutionalized settings do terrible things to children. Loss and grief and pain and culture shock do terrible things to children. My kids are dealing with all that and more. Our parenting style looks nothing like a typical American parent’s parenting style. We are constantly hunting for the underlying cause, the trauma trigger causing a meltdown or the traumaversary (what adoptive parents call the anniversary of a trauma) that is coming up and causing one child to completely lose it. A discipline episode in our house is never about the misdeed alone. It is always about so much more because misbehavior from our kids always means so much more than the immediate action. Pedro and I are constantly reminding ourselves that we cannot react to misbehavior; we must respond: with love, with kindness, with understanding. Only when we effectively practice therapeutic parenting, day in and day out, even when we don’t want to – only then can our kids begin to heal the gaping wounds in their hearts.
All that said, we are incredibly blessed by both of our children. They are doing amazingly well. They are two of the strongest, most resilient people I know, and I admire them both immensely. In Ukraine, children 10 and older must consent to being adopted. Both our kids had to stand in court and face cross examination about why they wanted to be adopted. I couldn’t have done that when I was 10 or when I was 12. At their ages, I certainly couldn’t have faced life in a foreign country, with a family that didn’t speak my language and with parents I barely knew. Selena and Michael have done all those things. They have earned my admiration.
Now that they are both home, they are thriving. They finally have people in their lives to care for them. Selena is doing well in school for the first time in her life. She gladly tells anyone who will listen that she was “stupid” in Ukraine, but in America, because she has parents, she is now “smart.” (So smart that she has made the honor roll every quarter this school year!) Michael is already starting to grow and heal. He is gradually learning how to ask us to fill his needs (what a typical child does) rather than manipulating us to get what he wants (what a traumatized child does). His temper tantrums have already reduced in frequency and duration. Selena and Michael are both learning about God, learning what it means to be in a family, learning what it means to have people who love you even when you don’t love yourself. It’s an incredible experience to watch them grow, learn, and heal. Even with all the bumps in the road, I thank God every day for the gift of my children. I am so blessed.
Miggy: What are the biggest worries you face for your children?
Isabelle: Regarding HIV, I worry their diagnosis will cost them friendships and relationships. Even though they are not required to tell anyone other than doctors and relationship partners, these sorts of things have a way of getting out. I worry that the culture of stigma and rejection surrounding HIV in America will never change and that my children will suffer because of it.
As real as those worries are, my bigger worries are for their long-term emotional health and wellbeing. The statistics regarding the long-term success of adopted children who were older at the time of their adoption are not always encouraging. Every time I think about what could happen to them in the future, I am more determined to do everything I can for them now: to show them my love is unconditional, to teach them how to handle anger and fear, to provide them examples of healthy relationships, to help them heal from the traumas in their past. I want my children to be emotionally healthy individuals, and in order for that to happen, I have to do the never-ending work of therapeutic parenting. Their healing occurs one moment at a time as Pedro and I again and again and again choose to respond therapeutically to our children, rather than reacting instinctually.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Isabelle: Selena is blessed with beautiful olive-colored skin that perfectly matches Pedro’s Latino skin tone, and her facial structure looks very much like mine. Michael also has Pedro’s dark coloring. When people see us together, they typically have no doubt that both kids are our biological children… except that I am only 15 years older than Selena and look even younger than that. Add to that the fact that Pedro is over a decade older than I am, and it makes for some awkward age possibilities. The double-takes we get are quite hilarious! We can almost see the mental math calculations as they occur, followed by puzzled and shocked looks when the ages just don’t add up. If the person we’re meeting is someone who genuinely seems interested or is someone we will see again, I will take the time to explain that we are an adoptive family. But when this happens in a superficial setting, I usually chuckle to myself and walk away.
Miggy: How can people best approach or respond to your children in regards to them being adopted? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Isabelle: When people find out our children are adopted, the most common response is that they are “so lucky” to be adopted. Every time I hear this, I cringe. I know that this statement is made with the best of intentions, but it is incredibly hurtful to an adopted child. My children are not “lucky” to be adopted. If they were truly lucky, their biological parents would still be alive, and they would be living in their families of origin. If they were truly lucky, their adoptions would not have been necessary. Calling adopted children “lucky” to be adopted ignores the incredible trauma they have experienced and makes light of the very real struggles they face in learning how to handle life in a new family, new country, and new culture. Just once, I wish someone would instead turn to me and tell me how lucky I am to have them, for I am truly blessed to call them my children. Calling me lucky is much closer to the truth.
Miggy: If you could say something to a family considering adopting children with HIV, or another family who has children with HIV what would you say? What would you say to yourself if you could go back in time?
Isabelle: Don’t be afraid! Thanks to modern medicine, HIV is such a minor concern. Be diligent and do what needs to be done to make sure your child gets the best possible care, but beyond that, don’t sweat the HIV diagnosis. Honestly, if I had it to do over again, I would take at least half of the pre-adoption time I spent doing HIV-related research and instead spend that time working through the training materials recommended by our social worker. The “adoption” part of adopting a child with HIV is much more difficult than the “HIV” part, and pre-adoption preparation is vital to surviving those first few weeks and months with a grieving and traumatized child.
But most of all, I would tell myself to prepare to be amazed. My children have taught me so much about perseverance and determination, about strength and loyalty. I love them fiercely, more intensely than I ever thought it possible to love another human being. I would give anything for them, would do anything for them. They are my heroes.
Miggy: What is the biggest lesson you’ve learned since becoming a mother to HIV positive children?
Isabelle: No person is ever defined by one thing, even if that one thing is something others would view as paramount to a person’s identity. I saw the way my children were treated in Ukraine because of HIV, where the HIV label was all others could see. I see the way they are treated here, where very few know about their diagnosis. They are the same children, yet the way they are viewed is drastically different. Take away the defining characteristic of their diagnosis, and people accept them for who they are: strong, resilient, incredible, fun-loving children. I have learned that no one is as bad as their worst aspect, nor as good as their best. We must not judge someone harshly because of their low points or praise someone solely because of their high points. Everyone is a unique conglomeration of good and bad. We must look at the whole person rather than jumping to conclusions about a person’s worth or identity.
Isabelle, where do I start? How about "No person is ever defined by one thing..." Amen! Whether that is religion, sexual orientation, disability, gender or HIV status that is a truth everyone can agree upon. No one wants to be constantly shoved into a tiny box with a giant label feeling trapped by one small part of their entire identity. Thank you for giving us such a great overview of what it's like managing HIV today. I had no idea that it was possible for an HIV positive mom not to give HIV to her baby, or for an HIV positive person not to spread it to their partner. Yes, so much education and awareness needs to be spread about HIV. Additionally I love everything you said about adoption--yes you are indeed a lucky mom. So much truth telling in here, I know I'm going to read this again and again. Thanks so much Isabelle and so much love to you and your amazing family.
Can I get an AMEN everyone? Amazing right? Again, if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com.
Have such a great weekend!