looking beyond the prejudice

A few days ago I got one of those emails that you get when you sign up with an organization to receive their updates.  I'll admit that most times I just delete them.  I don't often find time to sit and read through a bunch of newsletters.  The email came from a ministry that works hard to advocate for children who are waiting for families. 

For some reason on that particular day I felt led to click on the little waiting-children icon at the top of the page.  I don't do that very often--it just about rips my heart out to see the little faces that stare back at me.  That day was no different.  I sat there with tears streaming down my face as I looked at 1077 children who were longing for someone to come and get them.

My heart ached.  I once again realized just how many children there are waiting for homes who have the same special need as two of our daughters.  I once again wondered why.  Why are they so hard to place in homes?  Why are people afraid of it? 

I figured this was a good time to dive into a question I get asked repeatedly. A few of you asked me here...what is it like raising a child who has Hepatitis B?

I remember how we felt more than five years ago when we were given our first adopted daughter's referral.  Like us, people just don't know that Hepatitis is a very doable thing.  Once the label "infectious disease" gets stamped next to a child's name, it naturally makes many want to put on their running shoes and run in the opposite direction.  I know it did for me.  Heck, I was terrified. 

I will never forget the day we got Hannah-Claire's information from our agency.  I was absolutely clueless what Hep B even was.  I knew my kids got a shot for it somewhere along the line, but that was all I knew.  That day I happened to be out in my front yard and a neighbor came by.  In my great excitement I cheerfully announced to her that we had just gotten a referral for a child, and were prayerfully considering whether she was our daughter or not.  I told her about the Hep B. My well-meaning neighbor, who just happened to be a nurse, was horrified.  She asked me if I knew what that was?  Did I know what we were considering getting ourselves into?  Did I know what this could do to our other kids?

Um, actually, no, I had not looked into a single solitary thing yet. I did not know anything about it. But she sure did get my attention that day.  I quickly started researching.  Good grief, my online research made me feel no better.  I read testimonies of other parents who had adopted Hep B kids and how they struggled for years to keep their children's "condition" a secret.  I came away from my hours and hours of sitting in front of my computer that day certain that I had found the one golden rule about adopting children with "infectious diseases"--Don't tell anyone.  Ever!

I think back to those first days and months with Hannah-Claire and I think about how things were back then. Trying to keep a secret was probably one of the most annoying things I have ever done.  I felt like I was living a lie.  I mean, it was just crazy.  Even when we went to the doctor or the dentist, I would feel the need to lean over the reception desk and whisper in the receptionist's ear that "my daughter is Hep B positive"--in my softest voice just so that no one else in the waiting area would hear and my secret would be out.

Ridiculous!

We carried on that way for a while...until we just could not take it any longer.  We hated living that life.  It was such a nuisance. I felt like I was constantly walking on eggshells.  It seemed so contrary to the life of freedom in Christ that we are called to live.  I felt like we were bringing more shame upon Hannah-Claire by teaching her that she had to keep a secret and not tell anyone than by living in the light.  It just felt all wrong.

Just a few months later we took on what is known to some as the Salem's "whatever attitude."  We came to a place of, Whatever, God.  We just could not live that way anymore.  We were choosing a different path--one to live in the light, as He is in the light.  We were choosing to be open and honest about Hannah-Claire's need, and if anyone didn't like it...whatever.

God was so funny.  No sooner had we made the decision to not keep our daughter's Hep B status a secret that He led us on another journey, to another little girl with Hep B.



Many people write to me and ask me about our choice to be public about our daughters' special needs (ugh, I hate that expression).  Many want to know what it is like raising children who have an "infectious disease."  I can honestly tell you that it has been easy--an absolute joy.  As I looked over some of the little kids on that waiting child site, my heart broke for them.  Truthfully, it has got to be one of the easiest, most manageable special needs out there.  I actually have to remind myself to get my children's blood work done regularly.  They are so healthy that I forget about it.  They are by far our healthiest children.

What do we have to do for our girls? 

Not much at all, actually.  We get a blood test done regularly to ensure that their liver enzymes are where they should be.  But that's it.  That's all we do.

What about our other kids? 

Hep B can only be transmitted sexually and through the blood.

Would I advise everyone to share their children's Hep B status?

Well, I can't answer that because everyone is different.  Each to their own.  It was definitely the right thing for us to do. We have used our choice to be open as a way to educate and inform people, and even encourage them to help these orphans.

Do people treat our daughters differently once they know? 

No, absolutely not.  We have maybe had one or two instances over the years where someone has reacted negatively.  For the most part people are so amazing with it.  It is just a non-issue.

Are parents required to disclose to schools and daycares about their child's Hep B status? 

No, I don't think so, but things may have changed since I last looked into it.  As far as I know it is your right as a parent to not disclose if you choose.  I remember every state being different on that requirement too.

Are we afraid about what people will think? 

Nope.  We gave up being concerned about what others think a very long ago.  As far as we're concerned, if someone is not happy about it, that's their loss.  If someone is going to judge my daughters and choose to not be friends with us...well, then that's their issue. It sure is a great way to separate those who love us unconditionally with those who don't. We really don't need or want those kinds of "friends" in our lives anyway.

Like HIV, the disease is not spread by human contact and every day life.  It is not spread by sharing spoons and drinking from the same cup.  Just like everyone else, we teach our kids not to share toothbrushes and not to touch each other's blood.  Very uncomplicated stuff.

It really is as easy as that.  I understand the fear that goes with bringing any child labeled "infectious" into a home.  I know because we have been there, done that.  We had no idea what to expect.  We were so ignorant.  But I am here to tell anyone considering one of these special children that it is such an easy special need.  With a healthy diet, fabulous medical technology and the love of a family, these kids (like all children) flourish once home.

Does that answer all the questions on Hep B?  Let me know if I missed anything...or if you were curious about anything else regarding raising these amazing children.  I'd be happy to add anything.

Like every other child who is waiting for a family, these children deserve an opportunity to be loved too.