Thursday, December 14, 2006

Oh Come On!

Is it still possible in this day and age that people still think they can "catch" HIV from a child? From a hug? From holding a hand? Is it possible that the stigma of HIV and AIDS is still so deep...wait a sec...How on earth did it get so deep when this disease has hardly even been around...I mean it really "appeared" only 20 or 30 years ago...how does that happen?

We have a young guy in clinic who needs medication - but we cannot start him on medication because he lives in a house with a lot of people who do not know he has HIV and he is TERRIFIED to tell them. This could quite possibly kill this man. The fear of the reactions of the people he loves the most in this world.

Jesus must just cringe when walking among us. (I am certain he spends a lot of time looking at me cross-eyed) So if HIV is the modern day leprosy...then why wouldn't Christians want to do everything they can do help those who suffer with this horrible disease? It is quite clear it is what Christ would have us do. When caring for and loving people with HIV are we not showing love for Christ himself?

Why would a Christian Adoption Agency say that they will not facilitate the adoption of an HIV positive child? I can tell you that it’s out of ignorance and fear. (And, I can't help it, it’s also out of stupidity)

I sat in a meeting yesterday with several government officials where we had to identify the major challenges we face in successfully treating young people and pregnant women with HIV...would you believe one of the major challenges was stigma and disclosure? And then we had to make an "Action Plan" (These were government folks you see...)

I said, "This is so huge...its something that has to change on a societal level...how do we do that?" It seems like a drop in the overflowing bucket. Its like saying "Oh there are 20 million orphans in Africa- we brought home 2." What good is that in the big picture?

I once took care of a sweet little girl. A funny little girl. She had AIDS. The full blown kind, that you hardly see in the US in kids anymore. She was so sick. There were no medicines to help her. She was dying from the day that I met her and died when she was nearly 3 years old. I held this little girl for hours upon hours at night- we would rock and sing and I would pat her arm. She had a horrible patch of shingles on her arm that just got worse and worse over time. It was always bandaged and hurt so much. She liked it when I would pat her arm (really hard). It deflected the pain in a way that made it slightly more bearable. She could barely eat due to the thrush in her mouth. This, too, hurts like you cannot imagine. She had diarrhea constantly and sores on her bottom that made it unbearable. She loved to be worn on her mommy's back in the backpack and walk around the Christmas Tree farm where we lived. She loved birthdays and ketchup and Santa. She loved the song "Rainbow Connection". She also loved the song, "And I will raise you up on eagles wings". She never was able to walk well independently. For a little while she used a walker and then she started deteriorating. I remember that there was a new drug, DDI, but she was too sick to qualify for the drug treatment trials.

This breaks my heart more than anything. She was too sick to be able to get a new drug that may have brought her more months or years of life. Someone made up the rules and said that this little girl had no more choices left. And I think back and with what I know now...what we all know now- she would not only be alive today but would be thriving- this little 2 year old- our little Tina- would be 18 years old. She would be graduating from High School or quite possibly in college. She would likely be in love, and because she was so beautiful and so sweet and funny- someone would be in love with her right back.

She died in 1991. In April. Right after Easter. I buried Tina. Literally. It was a warm day in Northern California, near the coast, and she was being buried near the chapel at the Christmas tree farm. They asked me to bury her because they did not want just anyone to do it. It had to be someone who loved Tina and whom Tina loved. So I had to prepare her grave. Help to lower her tiny casket into the hole and then fill the hole with dirt. It took me all day. I will never ever forget this.

This is why my heart breaks when I hear that the agency that I chose to help me bring my own sons home from Ethiopia will not help to bring home a child with HIV...... And I am truly not being dramatic here when I say that they have blood on their hands. Because HIV care in Ethiopia is much like HIV care was in Northern California in 1991 and these children that CWA and other agencies are leaving behind don't stand half a chance. And someone has to pay for other people's ignorance and prejudice and fear and LAZINESS...but why should that person be an innocent child?

Here is my Tina. She never lets me forget.


Christina "Tina", May 16, 1988 - April 9, 1991

ps Why are they lazy? Because they will not take the time to educate themselves and their staff about the disease and about how wonderful adoption can be for thse children and how to manage the minute differences between this type of adoption and the adoptions of children with other diseases like TB, Hep B, Diabetes, CP, and others.

13 comments:

Ginger said...

So very well said! Tina died tragically, but she had more than many HIV+/AIDS children have (especially in places like Africa where the stigma is overwhelming), and that is a very special and immense love from you.
It angers me to hear that not only are agencys not willing to learn about how simple it is to place HIV+ children, but that they are perfectly willing to split up sibling groups (who've lost so very much already) rather than passing them onto an agency (like our AAI) that will ensure that they are placed together, regardless of health status. Perhaps since their minds are so closed to acting in a Christ-like manner when it comes to HIV+ children, they cannot imagine that there are families ready and willing to love and care for these blessed children of God. Hipocracy such as theirs (CWA) and other supposed "Christians" who preach one way and then act another infuriate me.

The Barr Family said...

You are right Ginger. Tina had a family who loved her. Many of the kids in places like Ethiopia have nothing- no medical care- and no one to care for them. Places like AHOPE are wonderful...but I have been to AHOPE and I can tell you every one of those kids would trade that for a family in a heart beat. And its great to see it actually happening!

Christ's Servant said...

Thank you! Isn't God amazing, though, how he can take this woman's heart that was afraid to hug an AHOPE child and then decide months later to adopt. If only more would see there is not a problem with this. Thank you for sharing your heart. I know so many other agencies that are starting to adopt HIV+ children that I hope CWA will follow soon.

Erin said...

I love ya Em!!! I am just bawling for Tina and all of those kids that we left behind at AHOPE. Even though they receive "good" care there (excellent for Ethiopia) both my Belane and her friend who recently came home were both "a mess" when they came home...nothing life threatening, but lots of little things, and lots of results of the HIV because they were not sick enough to treat in Ethiopia. We are SO grateful that she is home, and that AAI was willing to help us bring her home, and that it is 2006 and not 1991 and she should be able to live a long and full life. My prayers daily are for the kids in Ethiopia...the ones at AHOPE and the ones not lucky enough to even be at AHOPE. I pray for the kids who have realized that some of their friends have been adopted and are being adopted, and now dream for families of their own. They all are so hungry for love and affection. No orpahange can compare with the love of a family and the security of home. There are so many I would take in a heart beat...
It is truly disgraceful that an agency (especially one that uses the name of Christ) would refuse to facilitate an adoption for a child with HIV...especially when there are parents ASKING them to do so. It is so hard to beleive that a Christian agency would draw a line as to which kids are deserving of families and which kids don't belong in the U.S.
Every child placed from AHOPE saves two, because when that child goes home, there is room for another child to come into AHOPE and receive the medications and the hope for a better, healthier life.
I could go on forever...obviously this is near and dear to my heart. I actually ended up in an elevator with Ms. Director of CWA while I was in Addis at the Hilton, and I would do anything to go back in time and tell her what I think of her(at that moment I was walking Josh out of the hotel to send him to the airport without us, and I was already crying)...I would love to let her ooh and aah about how cute Belane is and then tell her she is from AHOPE....I would have loved to tell her how cowardly and hypocritical I think she is...prancing around the Hilton in her fancy clothes, jewelry, makeup, etc. and knowing her stance on helping children that TRULY need it.
Ok, I am done. Thanks Em...it is wonderful that Tina had you and her family, and it is wonderful that you are there for all of your patients and being a voice for those who don't have one. I am praying for the young man afraid to take the meds.
One day we will meet in person... I have a big old hug for you. :)
E

Brianna Heldt said...

AMEN. What I have read about CWA and their policies troubles me. One of the main problems in my opinion is that so many people will use them simply because they're a "Christian" agency, therefore they MUST be better than anyone else. This doesn't seem to provide much accountability.

We are Christians and used Adoption Advocates Int'l. They are amazing and AHOPE was actually partly their idea.

I grieve for the HIV positive orphans in Africa and I hope and pray that more and more will be adopted. We have talked about perhaps in the future adopting a sibling set where one child has the disease, therefore making sure they aren't split up. I don't know if that will happen someday, or what God has for us. If I am honest with myself I will admit that I have fears too, fears about how difficult it would be, fears about the possibility of losing a child, etc. But in my head I know the truth. That each precious life is valuable. That children need families. That God is bigger than all of it.

The stigma of HIV and AIDS really bothers me. Where is the church in all of this? Why is this one disease/issue that Christians aren't allowed to talk or care about?

This was an excellent blogpost and I really appreciate you writing it; I'd love to hear more on this topic if you have more to share. I plan to link to it on my own blog.

KelseyChristine said...

Amen, Amen, Amen.

sneathspot said...

Oh Emily, this post really made me cry. The thought of the other little girl, who tonight is going through all this without somone like you holding her and rubbing her arm is heartwrenching.

It is through telling stories like this that you will encourage all of us to change our world, one life at a time.

Bradshaws said...

I too have to say, I learned one more thing reading your post, thank you for that.
I teared up when I read that one of her songs is On Eagles Wings. I paused and sang it to myself. It was one of my favorites growing up Catholic, and we sang it at my Grandmothers funeral. This is a very dear and wonderful song.
There are so many things I too would love to have answers to in relation to this agency, that I just wont ever get. But I know, that I can answer to God for my part of our adoption, and I too wish they would think harder about their answers one day, that they WILL have to answer to!!!
KT

Laura said...

It was worth the wait! Thank you for updating your blog with such an important commentary. I am filled with tears and a heavy heart for all of the little "Tina's" in Ethiopia and around the world. People like you, Em, helped make all these amazing changes with respect to AIDS and it is your tireless commitment that will make the change we've seen pale in comparison to the strides we will make toward the eventual cure.

I have much to say but not much to add -- what you have said and those who commented before me have said it all and then some so I will just say to you, my friend, Bravo for saying it.

Wherever you march in life, I will proudly march in step. I love your spirit.

Laura said...

There is one thing I have to say that I was thinking about in bed last night. I also used CWA and some might say "why did you use an agency that did not support or provide assistance to children with AIDS needing homes?" The answer... I never EVER thought to ask them. It honestly never occurred to Brian or me that ANY agency with representation in this region would not considering the large problem it presents. It just was not something I ever thought to ask.... but now you know, and wisdom is power.

Daniel said...

Powerful words, Emily. Thank you for the convicting reminder. I appreciate your heart and desire to work with children who HIV+. The world could use a lesson on love as well as an education about how to care for children with HIV. Thank you again.

Kali said...

What do you think is the best way to advocate for these children and change the policies that discriminate against their chances of adoption? A letter writing campaign from those who have used the agency who are dismayed by the policy? What will speak to them? How do we change this?

Swerl said...

Wow. I am at work, crying. Good thing it's lunch and everyone is out! I understand where your passion and eloquence on this issue comes from now.

I've started my own blog:
http://swerl.blogspot.com, as my wife and I move through the process of adoption and also as I try to wrap my head around what can be done. It seems like there is a natural constituancy to push for change among the Ethiopian adoption community.