Secrets, Privacy and Viral Infections

I wrote this blog originally for my non-secret-thoughts blog.
I kept it in "draft" mode.
I've since decided I don't want to share this info publicly since it's not my medical info to share.
I still believe everything written here, and the facts are facts...so please read.


I believe there's a fine line between keeping things private and keeping secrets.
There is an inherent sneakiness to secrets. I urge my children to share "surprises" instead of "secrets" with friends because anything you are keeping a secret is probably just not a good thing to begin with. I also don't trust the term "secret" because of the shady history of using that word to shame children into not telling adults when something has happened that they really SHOULD share.
So, no... I'm not a big fan of secrets.


I do, however, appreciate privacy. There are things within families that are private. There is information shared with your physician which is kept private. Some things should just be private... but in the name of privacy, I've kept silent about information which should be shared.

I tread carefully in these waters, knowing that what has been shared can not be unshared. Protecting the privacy of the information I hold for my children until they are old enough to choose to share or not... it's a big responsibility.

I also do not want my children growing up in this ignorant world any longer. The fear, stigma, shame and misinformation surrounding our "secret" is only growing, while the sharing of information from those who truly know the truth is being hushed for fear of backlash or our children being blacklisted from play dates.  Social stigma being what it is (a killer of self-esteem), I am torn between privacy and sharing of information.

Ultimately, I believe the information is more important that my own personal relationships with other adults and my children losing a few friends or not being invited to birthday parties.

The secret has a name.
It is called Hepatitis B Virus.
There is HepB in our house. I won't tell you which of my children has it, because that's not for me to share. However, I would like to take this moment to educate you, for my children's sake, on the facts surrounding this virus.

1. It is not a virus like the common cold that you can catch in a crowded movie theater or at the grocery store. Hepatitis B is the most common serious liver infection in the world. It is caused by the hepatitis B virus (HBV) that attacks liver cells and can lead to liver failure, cirrhosis (scarring) or cancer of the liver. The virus is transmitted through contact with blood and bodily fluids that contain blood. It is not transmitted through the air, skin-to-skin, vomit, runny noses, or through kisses. I share bites of food with them and I've accidentally drank after them (accidentally because EEWWW. I hate floaties in my drink!). Your kid won't get it from mine in the classroom, on the ball field, or at the pool.

2. It is not a death sentence. Most people are able to fight off an hepatitis B infection and clear the virus from their blood. This may take up to six months. While the virus is present in their blood, infected people can pass the virus on to others.The CDC reports there are approximately 1.25 million Americans infected with HBV. They sit by you at church, serve you food at restaurants, play with your children at the park, and they may even be your family physicians.Approximately 5-10% of adults, 30-50% of children, and 90% of babies will not get rid of the virus and will develop chronic infection. Chronically infected people can pass the virus on to others and are at increased risk for liver problems later in life.

3. Do not be afraid. Clearly, I'm on the more laid-back end of the spectrum with HepB... but I've consulted with experts, multiple doctors, specialists and my own common sense and here's what I know: you aren't going to get HepB from being around my kids. I don't even worry about my other children in the home catching it because I clean up the blood around here and I'm relatively smart about it. Yes, I've grabbed a bleeding hand to apply pressure without first looking for a pair of latex gloves. I'm smart enough to know not to grab a bleeding hand with any open wounds on my own hand.  However, as we were told from one of the leading specialists in the country - even if no one in our family was vaccinated for HepB and we happened to all be in a big car accident and there was lots of blood and no way of knowing whose was whose... we would still have 48-72 hours to get vaccinated and beat the virus. If your children are on the normal APA vaccine schedule, they've been vaccinated against HepB... so, as long as the vaccine is doing what it's supposed to - you have no worries!

Why do I share this information with you? Why now? 
Well... I've overheard multiple times recently "I'd be totally fine adopting a child with HIV, but hepatitis scares me to death!"   I've heard horror stories of families being "outed" at school by the nurse (calling all of the parents in the child's class to inform them). I've heard false information shared (you actually CAN'T catch it from sharing sippy cups. There's a slight chance if there's blood on the sippy cup, but I've never heard of a single case of HepB transmitted through sharing of cups. Neither has my pediatrician or any of the specialists we see.)

I share so that you know we have a pretty sick kiddo here. Our child's virus is active and attacking the liver. It's causing damage and it's time to treat with some high-powered medicines. This will be a 6-month course Interferon treatment and it's not likely going to be a walk in the park. The side-effects cause loss of appetite and for this particular child with no real appetite to speak of... this could be cause for concern. Yes, this child's virus is more "active" and therefore likely more contagious. That doesn't mean your child is more likely to "catch it" from our child, it simply means that should their blood mix together, then yes - the likelihood is higher.

I share so that you know what we've been through. Many, many, many blood draws, doctor visits, ultrasounds, a liver biopsy right before Christmas, meetings with specialists, supplements, researching, praying, hoping and watching like a hawk for changes. This week brought 3 doctor appointments and tomorrow - an upper and lower GI scope procedure just to rule out any hidden issues before we start treatment.

What does our course of treatment look like? Well, it's 24 weeks of weekly injections - done by me at home. It's approximately every two weeks doing more labs, monitoring and just being diligent with our child's food intake and nutrition (mostly because of the weight loss aspect for a child with no weight to lose!) But, other than that... we will go on like normal. We may have a laid-back day at home if the flu-like symptoms pop up, but we will keep doing what we like to do and keeping things as normal as possible.

What can you do?
Stop lies when you hear them. Help stop the stigma. Don't whisper behind our backs or try to guess which child I'm talking about. Pray for total healing and that the "sliver of possibility" that our child would clear the virus totally would be reality for us. Pray for my stamina.

Balance and Encouragement

I was recently asked to speak at our annual women's retreat.
On balance.

*hysterical laughter*

Balance? Me? Surely you have the wrong person. Not only am I sure you have the wrong person, when I mentioned it to my husband, he nearly fell out of his chair laughing. And he's really more of a deep chuckle kinda guy.

After a few days, I felt pretty convicted that I should speak, but if I were to speak on balance, it would have to be more along the lines of "Saying 'No' So That You'll Be Ready for the Big Yes."
It turns out that that theme wasn't what they were hoping for.

I didn't speak at the retreat.
Nor did I go.
I'm balanced like that.

When I talked with a friend about it, I got more of the story. Turns out that if I said no, my back-up was an adoptive mother. And her back-up was another adoptive mother.

I sense a theme here.

Do you know what we all have in common?

It isn't balance.

None of us is overly involved in stuff. There's nothing to balance when out of self/family/child protection survival you have to cut out everything that isn't a necessity.

Our "balance" is, you guessed it, saying no because you said yes.

The idea of doing a retreat/bake sale/VBS/birthday party/dinner party/Sunday school/Wednesday night dinners/sight words/fund raisers/competitive ball teams/musical/choir/talent show/Christmas gift exchange make me suffer panic attacks so great that I consider home schooling and house church just to get out of it.

Which leads me to my second point: my church wants me to write about My Christmas Miracle (a.k.a. The Adoption) for our newsletter. Because it's such a great story.

"But keep it encouraging."

OK, I spent Christmas in Africa.
That's third world, for those of you not in the know.
I ate goat entrails for my Christmas meal.
My judge said, on court day, "There's a problem."
My child would not acknowledge my presence.
And still often won't.
And I have no friends.
Because I shrank my world down to four walls and a roof.

That sounds encouraging.
And balanced.

Incoming panic attack in 3.....2.....1.....

*duck and cover*

That post where I offend lovers of the term "orphans"

I hate the word "orphan".
I just hate it.

I can't help but notice how it's been used in the past few years to evoke an emotional response and cause people to MOVE on behalf of children... but I am just DONE with the word.
I'm done with t-shirts and posters and special awareness days using the word "orphan".

Here's the thing, folks...
I've noticed that the people who are pushing these orphan souvenirs (t-shirts especially) are adoptive parents themselves for the most part. Let me get this straight. You go out in public, WITH your adopted child, wearing an "orphan" t-shirt?? Why?? So you leave no doubt in anyone's mind that your child is adopted? So that they look at you like the local orphan-guru, know-it-all, expert-on-all-things-adoption? So that you look better than anyone else?
Yes, we've adopted children. And you know what??
They aren't orphans anymore.
They are my children. MINE.
They have a family.
They have a Mommy and a Daddy.
They are cared for and provided for and most importantly - - they are NOT my ministry. 
They are my children.
They are not YOUR ministry either.

So, we won't be standing under any "orphan" banners in a few Sundays proclaiming the "good thing" we've done.
We won't be showing our former-orphan children off in front of the church and talking about all the kids who we didn't choose who are still waiting.
This is personal.
Their former-orphan status is personal.
They are real children with real stories!!

Shame on us for pimping our our children to further the local orphan ministry.

And what of our biological children?
Are they somehow less important since they've never lost their parents?
Are they somehow less special?
Maybe we need a shirt that says "7 Billion people on Earth. I am one of them." just to seal the deal.
It's like a world of Sneeches. We could get stars tattooed on our foreheads and have a universal code letting people know how many kids we have and how they came to us - just so everyone knows we've survived both forms of family enlargement.

Does this not seem self-serving to anyone else?
I understand wanting to advocate for children with no family of their own... but there HAS to be a way to do this without all of us adoptive mothers (and fathers) looking like a bunch of pride-filled, orphan divas.

Mourning

I lost a niece today.

Her mother is heart broken as are the rest of us. She was supposed to get on a plane to go meet her in three days.

I mourn a world that doesn't understand why this is devastating. I mourn a world that doesn't value her children. I mourn a world that doesn't know that this child, whom we have never met, is still in our family. I mourn.

I go to the library and am asked how I am. "Doing alright," I lie. My niece died. Oh dear! Which one? She's the baby girl we planned to welcome home next month. Oh. I play the conversation out in my head and opt to keep it to myself.

I make the calls and scrape my heart off the floor to play Tomas the Train with my son who doesn't understand why mommy can't stop crying and I even question it myself.

For those people who don't understand adoption, who don't see it as anything but a chance to grow your family should you desire more children, who don't know that if we don't value the next generation all hope is lost, who don't see the value in a soul with special needs (be it chromosomal, color, age, birth defect, or otherwise), they might not understand why we are all crying.

Thank goodness you hadn't met her.
You really dodged a bullet. Imagine if she'd come home and then died.
All things work together for good.

I mourn a world that would see this as anything other than the loss that it is.

Yes, we are mourning a child we never knew.
She died without her mommy.
But she went to Jesus loved.
Her mommy said yes.

But for the Grace of God Go I

I found out this morning that a fellow adoptive mama of a child my child knows was arrested for child abuse.

As I read through the articles about the situation I was sick that I didn't know. Or didn't do. Or something. And the other part of me just keeps thinking, "What if it were me?"

We visited online and she would ask how things were for us and then she would ask if my child did some of the same behaviors and I might say yes or no. We'd promise to pray for one another. We'd say God will get us through this hard season. We'd agree that we knew it wouldn't be easy. And I guess I thought her situation was like mine. Hard, but doable, with many sunshiney moments.

Adopting is kind of like bootcamp. It doesn't matter if you would have been friends if you met on the street, you are bound by your experiences. And we adoptive mamas share our experiences. Probably more freely with one another than with others who haven't been there. I have a whole group of them that I would trust with a lot more information than most others in my life.

And I didn't see it coming.

I mean, you say stuff. This kid is driving me crazy. I'm so, so tired. I'm waiting for the beautiful. Can you believe he tried to pull this? When will they learn to use toilet paper? Another meal rejected. When will they eat my food without fake vomiting? I say it. Others say it. But mostly it is a momentary thing and you move on.

I haven't talked with this mom in several months and hadn't really thought about her, I'll be honest. But as I read through the list of stuff charged against her I could itemize most of it against some known older child adoption behavior and wonder....was it simple discipline gone wrong? One behavior, one consequence might not have racked up charges. The compilation of many could. At what point should she have called in crisis management and said, "I can't do it?"

I am fortunate. My children irritate me, but their behavior is generally manageable. And when it isn't, we all go to bed early. I might raise my voice. I might make threats of no playdates ever again or other things that I'll have to reneg on. We might all cry. But my kids are just kids. Some are more hurt emotionally than others because of stuff that happened to them before me, but they are generally emotionally healthy. Generally well behaved. Most rottenness here is just "kid," not "adopted kid."

What if they hadn't been? What if they'd come to me having rages, spitting food, refusing to use a toilet, hitting, kicking, biting, threatening, pulling knives, killing animals, breaking windows, stealing, lying, damaging and who knows what else? You go to conferences and you hear that this stuff happens. I don't know about you, but I hear it and wonder how I would handle it. Would I handle it?

When you choose a child off a photolisting, you have no idea what you're gonna get. You have no idea how your family will react. You have no idea how the chemistry will work out and whether the child will love you or hate you. You are throwing complete dependency upon God and hoping for the best.

Could it have been me?

But for the grace of God go I.

The Motions

 A sibling group of seven came available for adoption in my state last week. Ages 15-3. To look at them, you'd think they'd fit right in to my biological family. They would "match."

Seven.
Kids.

I need seven (more) kids like I need a hole in my head. Even if we did intend to have a baker's dozen when we were young and ignorant of how all consuming children can be.

The thing is: there are seven kids that need a mama.

It's not about me.
It never should have been about me.
I think that's what people don't get.

My child has been home with us for five months now and it has been a rough five months. Some, many, days we are like sandpaper to each other. It's been hard, hard, ridiculously hard, crazy hard, hard. And I have thought, more than once, What have I done to myself? I had a nice life. My kids all liked me and I finally had everyone eating my food (most of the time). Why did I think I needed to add another child who would clearly rather be living on the streets than with a woman who has rules, for pete's sake?

But this week, I again heard The Motions, like I've heard hundreds of time since it came out and I heard the words again like I heard them the first time when they struck me dumb and tearful. And I remembered....I remembered how empty I felt four years ago. How I would ask, Is this all there is to life? This self-serving, good Christian mom and wife, nothing remarkably different than the masses but Clean Livin', Scratch Cake Bakin', Bible Study Goin', Biblical Disciplinein', Don't Let Anyone Catch You Sinnin', unremarkable suburban lifestyle?

I was empty and I felt....nothing. The living dead.

This life we have chosen is HARD. In more ways than the adoption, but the adoption sure factors in. It HURTS. I cry. A lot. And I'm ANGRY. And people don't get it. They don't get me.

But this? This feels like a whole lot more something than the nothing I felt before. And on my hard days, when I hear The Motions and I want to throw my rolling pin at the radio and smash it to pieces because it pisses me off that I wasn't happy dead, when life was easy, I'm still glad we went for it.


The Motions, by Matthew West

This might hurt, it's not safe
But I know that I've gotta make a change
I don't care if I break,
At least I'll be feeling something
'Cause just okay is not enough
Help me fight through the nothingness of life

I don't wanna go through the motions
I don't wanna go one more day
without Your all consuming passion inside of me
I don't wanna spend my whole life asking,
"What if I had given everything,
instead of going through the motions?"

No regrets, not this time
I'm gonna let my heart defeat my mind
Let Your love make me whole
I think I'm finally feeling something
'Cause just okay is not enough
Help me fight through the nothingness of this life

'Cause I don't wanna go through the motions
I don't wanna go one more day
without Your all consuming passion inside of me
I don't wanna spend my whole life asking,
"What if I had given everything,
instead of going through the motions?"

take me all the way (take me all the way)
take me all the way ('cause I don't wanna go through the motions)
take me all the way (I know I'm finally feeling something real)
take me all the way

I don't wanna go through the motions
I don't wanna go one more day
without Your all consuming passion inside of me
I don't wanna spend my whole life asking,
"What if I had given everything,
instead of going through the motions?"

I don't wanna go through the motions
I don't wanna go one more day
without Your all consuming passion inside of me
I don't wanna spend my whole life asking,
"What if I had given everything,
instead of going through the motions?"

take me all the way (take me all the way)
take me all the way (I don't wanna go, I don't wanna go)
take me all the way (through the motions)
take me all the way

I don't wanna go through the motions

On Expectations

It's been a rough few months since our newest came home and apparently, out of my whole family, I'm taking it the hardest. I'm just spent, ya know? And my husband keeps asking me, "What did you expect?"

I expected this.

But I hoped for better.

I hoped for a smidgen of gratitude.
I hoped for more flexibility.
I hoped for more affection.
I hoped for less strife.
I hoped for what most adoptive mothers hope for: an instant connection, instant love, the picture perfect ending to the horrid wait.

I knew it wouldn't be perfect. I didn't even expect perfection. But I hoped for it. Or something resembling it. Or something that looked like a glimmer in a reflection of a dirty mirror on a foggy day.

Now I'm just holding out and hoping for something beautiful on the other side of this.
Whenever that is.