**I want to preface this post by saying that I have only experienced parenting a child with HIV in an African setting. For many of the Ugandans I’ve met, their HIV status is not something of which they are ashamed and I have taken my cues from them. This being the case, I will not address the stigma of HIV that would be felt in the US, simply because I have not experienced that aspect of life as the parent of a child with HIV. If you have something to share about the US side of living with HIV, please email me and I will do a follow-up post featuring your story.
I’ve promised a post about what it’s like to live with and care for a child who happens to have HIV. I have a lot to say about it, so let’s call this:
[Part 1 – when my fear met a face]
First you should know that my plan in coming to Uganda was to stay as far away from HIV as possible. I was terrified of catching it from some dirty little hands or misdirected sneeze and I had no intention of putting myself at risk. God had asked me to move to Africa and I intended to be obedient to that call, but with lots of hand sanitizer and distance to keep me safe and sound. And then I visited FS, a care centre for children who have been orphaned by violence and AIDS. I was told that many of them had HIV, but didn’t know which ones. They all ran up to me, hungry for attention and touch and love. I swallowed my fear and loved on all of them, but washed my hands vigorously and showered twice to get the germs off. My love was cut short (maybe not in their eyes, but in mine…definitely) by my fear of their disease. Last year, I would never have wanted one of them to live with me. I figured I could just live out my time in Africa like this…pretending to not be afraid and scurrying to get clean if ever I was “exposed”. Seriously, this is what I thought.
Cut to two weeks later, when tiny twins were brought to FS by their dying mother. They were sick and underweight to the point that we didn’t know if they would make it and although we tried to inform the care centre on how to care for them, they got gradually worse over the next weeks. We knew their mother was dying of AIDS and would likely not be well enough to care for them in the near future, so we took them home with us.
A few weeks later, we found out that he had HIV.
Learning his HIV status sent me on quite a heart search about the sin behind my fear. My love for him was enough to make me stare my ugly fear of HIV in the face. I didn’t want to treat him any differently now that I knew he had HIV, but years of virus-avoiding behavior and a fear addicted mind had me trained to avoid anything that could put me at risk of sickness or losing control.
I have a small problem with fear. OK, it’s a big problem, but I’m working on it. Years ago I read Hebrews 2:15 where it says that a big part of why Jesus became a man was to free us from being held in slavery by our fear of death.
My fear of death was keeping me from being able to love him (and other people who are sick) with my whole heart. That’s a fear of death that Jesus died to set me free from. That means that by continuing to hold onto my fear, I am refusing his gift. Not cool.
I wrote more about this heart-process here, but in short, let me tell you that after prayer, it came down to a simple question for me:
What is more important to me: my health or his heart?
Was it worth it to me to protect my health at the risk of him feeling that he was unloved because of a virus that he got as a result of someone else’s mistake?
So I had to decide in favor of his heart. Over the next few days I watched Rachel care for him…and I slowly broke out of my stiff “infection control” mode. I started changing his diapers, kissing his wet mouth, and sharing my juice with him out of my straw. With each kiss, my fear died a little.
I am sharing this with you before talking about the facts surrounding HIV because I want you to see it from God’s perspective before you see it from the perspective of medical professionals. It’s true, the medical treatment of HIV has come FAR in the past few years, making it one of the most manageable diseases in the world. BUT, God does not call us to love (or adopt) only people who have manageable diseases. Overcoming my fear of HIV meant also overcoming my fear of TB, Hep B&C, mumps, scabies, and any other disease that might cause me to withhold my hand from a person in need of love. I’m not bashing good hygiene and infection control here, so please don’t email me your criticism. I’m a nurse and I’ve had ringworm and head lice more times than I can count, so I know the risks. What I’m saying is that sometimes Jesus calls us to risk something precious to us in order to love completely. Jesus got dirty for us…we can do that for each other.
The beautiful part about HIV is that you don’t really even have to get dirty. Read on…
[part 2 – the facts]
In the middle of my hands and heart deciding to love him, my head got on board, too. I started researching HIV and read this:
HIV can NOT be spread through casual/household contact. HIV is not spread through hugging, kissing, shaking hands, sharing toys, sneezing, coughing, sharing food, sharing drinks, bathing, swimming or any other casual way. It has been proven that HIV can only be spread through sexual contact, birth, breastfeeding and blood to blood contact (such as sharing needles). HIV is considered a chronic but manageable disease. With treatment, people who are HIV+ can live indefinitely without developing AIDS and can live long and full lives.
Say WHAT? I had NEVER been told this. I made it to 24 years old, through nursing school, and all the way to Africa without ever knowing that it’s REALLY HARD to “get” HIV. Like REALLY HARD. Like almost impossible unless you have sex or share needles with someone who is positive.
Do you want to know what is more dangerous that living in the same house with someone who has HIV?
Driving a car, swimming, walking down the stairs, eating, playing in the rain, and going to the fair or Disney World. Seriously.
93 deaths every DAY in car accidents1 -4 every HOUR
10 deaths every DAY from swimming accidents
8 deaths every DAY from fire accidents
4.9 deaths every DAY from falling on stairs
2.5 deaths every DAY from choking
1.5 deaths from lightening strike every WEEK
4.4 deaths on amusement park rides per year
Over the past 17 years there have been ZERO reported cases of household transmissions of HIV.
No “household transmissions” means that in the past 17 years (since the introduction of life saving ARV medications for people with HIV) there has not been one single case of accidental transmission of the virus, even among household members who eat, drink, play, and even bleed together sometimes!
You can’t get HIV like this:
[part 3 - the practical stuff]
Living with a child who has HIV is pretty much no different from living with a child who has any other minor medical complication. It means a few more trips to the doctor per year and it means setting your watch to go off once in the morning and once at night so that you can give him his ARV’s:
[it takes 3 minutes...seriously]
and then help him swallow it…or if you have a Mr. Independent on your hands, let him do it himself.
It means being careful to protect his immune system until meds make it healthy enough to protect itself. After it’s healthy, you really don’t have to do anything differently than you would for any other child. For some kids, living with HIV doesn’t even mean taking meds and in most cases in the US, you can get tailored drugs for your child that will get the virus to “undetectable” status. That means that even with blood to blood contact, the risk for contracting the virus is tiny.
Many people say it’s easier to take care of a child with HIV than it is a child with diabetes. Rachel and I ran a little poll at the hospital where we work in the village, asking which disease everyone would rather have: HIV or diabetes? 98% said HIV…hands down. Choosing to bring a child with HIV into your home through adoption does not pose any more risk to your other children than sending them outside to jump on the trampoline does. In fact, it’s less risky than most things kids do for fun.
Kids with HIV can share toys, kisses, pools, and pacifiers with other people with practically NO risk of transmitting the disease.
Most days, we don’t even think about the fact that there is someone in our house with HIV. It’s just a tiny part of who he is and if anything, we believe that it makes his life all the more precious. Even though he is only 1 year old, we tell him often that God didn’t mess up by allowing him to have HIV. Many people have prayed for him to be healed, so we can only assume that there is still HIV in his blood because it is necessary to God’s purpose for what we know will be a BIG, beautiful life.
For more great resources on HIV adoption, please check out these links:
From HIV to Home: http://www.fromhivtohome.org/faqs/
Positively Adopted: http://www.positivelyadopted.com
Project Hopeful: http://www.projecthopeful.org/
Center for Disease Control: http://www.cdc.gov/hiv/resources
FAQs about HIV: http://www.positivelyadopted.com/about-hiv
I have not made the commitment to permanently parent a child with HIV for the rest of my life and so I realize that my message here is only moderately relevant, especially since it’s only based on 9 months of having a child with HIV. I can say, though, that these 9 months with this little boy have convinced me that being the mother of a child with HIV is a blessing, one that I hope I get to have one day…permanently…for the rest of my life.