“This is going to be the most shocking phone call of your life…”
Those are the first 13 words Anne said to me when I answered the phone at work that afternoon.
But it was the next three words that proved her right… “Twins with HIV.”
I would like to say that I gave a prayerful and measured response after she said it, but that would be a lie.
I believe my response mirrored that of 90-year-old Sarah in the Old Testament when she was told that God was going to give her a child.
Adopting one more child
To appreciate my laughter, you need to understand a little bit about us and about me.
My wife Anne and I have been blessed with four amazing kids – two “tummy” babies (Abby and Adam) and two “airplane” babies from China (Mia and Will.)
I have seen the miracle of adoption. I cannot imagine my life or our family without Mia and Will. They have given more to me than I will ever give to them.
But having love for adoption and for my adopted kids is not the same thing as having the capacity to do it again.
Deciding to adopt again was easier for Anne… because she is brave and bold and generous and beautiful. It was harder for me… because I am an engineer. And there is nothing particularly brave or bold about that.
But after hours of prayer and even more hours of Excel spreadsheets, we came to the conclusion that God had given us enough margin to add one more child to our family.
So with this as background, you will understand the humor of the situation when He showed up with two…
Once I stopped laughing, I asked a few polite follow-up questions… the kind of questions you ask to seem interested when you have already made up your mind.
Because I want to be open (albeit sometimes reluctantly) to God’s extravagance, I said that we would pray and talk about it. I did it in the same way I had agreed to pray about other ridiculous ideas (moving to Africa, getting rid of television, becoming a vegetarian, etc.)… knowing that a loving God would not ask us to do something crazy. (I have since learned that this is not a safe assumption.)
I hung up the phone with 100% certainty that we would not be adopting twins with HIV.
In retrospect, I think that may have been when God started laughing.
Finding Ellie and Sammy
When I got home, we did pray. And we talked. And we looked up HIV on the internet (which included a 20 minute session watching old Magic Johnson highlight clips..)
And the net was a slight shift in my openness to the idea. I still thought it was less than a 10% chance… but for the first time, there was a chance.
And then I started re-reading their medical files. I don’t speak or read Chinese, but I still felt led for some reason to review the Chinese originals (rather than just the English translations.) And on the originals, I saw something completely illogical. Above the computer-generated Chinese characters for their names, two English names were hand-written: “Sammy” on the boy’s file and “Ellie” on the girl’s.
Beyond the surprise of seeing English names, the shock was magnified by seeing names that were both on our very short list of possible boy and girl names for our new child. (To be clear, we only needed ONE.)
And then I did something that bordered on ridiculous. I tried to look up two Chinese orphans on the internet using American-sounding names.
And then even more surprisingly… I found them.
Through the Facebook page for an HIV ministry in China, I found a ton of pictures of my children. (And yes, at that moment… the idea of them being “my children” started to feel very real.) Through our tears, we scrolled through picture after picture of them playing dress-up, celebrating their birthday, watching Dora the Explorer, and snuggling with their Western-looking foster family.
(We will separately need to talk about the fact that my three-year-olds already have a Facebook presence with a substantial following… a desire their 12-year-old sister has been denied to date.)
And from that Facebook page, we found the beautiful doctors who run the ministry. And we wrote them… and they wrote back. And they sent us more pictures and videos and medical histories. One video included the most heartfelt toddler version of “Jesus Loves Me”– in English.
We spent the next few weeks scouring the Internet and drilling doctors and HIV-adoptive parents with questions. At some point during this part of the journey, “Twins with HIV” became “Sammy and Ellie.” And, after some scrambling to retrofit our paperwork for two kids instead of one, they became “Samuel James and Elizabeth Grace Jutt.” Our children.
Since then, we have alternated between incredible excitement and a healthy sense of fear.
Sometimes the fear is about the fact that there are two of them. (While two is much larger than one, my friends argue that the difference between five and six is rounding error…)
Sometimes the fear is about their diagnosis.
Living with HIV
HIV. We have given this topic a lot of thought, and it still gives me pause to type it into a public forum.
We seriously considered keeping their diagnosis a secret. But how do I tell my children not to be ashamed of their condition if I behave as though it is shameful?
“Always tell the truth” and “no secrets” are two of the foundational ground rules in our family, and yet this diagnosis has challenged our convictions.
Knowing we were adopting through China’s Special Needs adoption program, many genuinely interested family members and friends have inquired about the kids’ medical situations. We have ducked their questions, hidden behind generalizations, and, in a few cases, we have lied to people we love.
Keeping the truth hidden has been exhausting and uncomfortable. Our kids have asked why we seem nervous when we talk about it. They have asked if it’s okay to share it during prayer time at school. We have hesitated when filling out preschool registration forms on questions about “health concerns.”
I understand those who choose not to disclose. Importantly, our right to withhold this information from our neighbors, our church, our school – everyone – is protected by a thousand laws. We very deeply appreciate the work of the many brave advocates who made these rights possible. We have been counseled by several wise people that this is a genie we can never put back in the bottle. A bell we can never un-ring. Others have encouraged us to wait – allowing Ellie and Sammy to decide how to handle disclosure.
We have considered these perspectives thoughtfully and prayerfully for months, mostly straining to imagine how the kids themselves would be best served. Bolstered by the loving, positive, open-to-education reactions of our closest friends and family members, we ultimately decided that, for our family, it feels right to address this topic in the light.
So there it is. Our youngest children are living with HIV.
Perhaps, like us, you could use an update about Human Immunodeficiency Virus. Anne and I grew up in the 80s, and that inevitably formed our early pictures of this disease. And while Anne’s taste in hairstyles has evolved significantly since that decade, our understanding of this diagnosis had not progressed much at all. (Perhaps unsurprisingly, I have the exact same hair cut that I had in the 80s…)
After becoming more informed, we now know that HIV in the US has been reframed from a terminal disease to a chronic one. The medicines used to treat HIV can take the virus down below detectable limits and keep it there for years and decades.
HIV is no longer a death sentence.
With their current treatment regimen, we have every expectation that Ellie and Sam will live long, full lives. Our beautiful, healthy children take medicine twice daily, and they experience quarterly blood-draws monitored by a specialist. We rejoice that they will be able to marry and parent HIV-negative children. And we have hope that they may see a cure in their lifetime.
The scientific community now knows much more about how HIV is (and more importantly how it is NOT) transferred. Sex, needles, and childbirth/nursing are the only modes of transmission. There are ZERO cases of transmission through casual contact.
Since we are hoping to keep our children from sex or intravenous drug use in the near future, we are very confident that the people in Sammy and Ellie’s lives will be safe. Our six kids will share a bathroom, and we’ll all continue to snack from the same popcorn bowl on movie night.
So there you have it. With the benefit of knowledge, HIV is no longer a major source of fear for us relative to this adoption.
Which brings us back to the fact that there are two of them...
Read Mike's view on how to change the perception of HIV
Originally posted on No Hands But Ours. Used with permission from the author.
This family story was graciously shared to RainbowKids with permission by The Lily Project, a grassroots organization who wants to see the lives of HIV+ children transformed through education, advocacy, foster care, and adoption.
View waiting children who are HIV+ by clicking on the photolink below: