Full House, Full Hands, Full Hearts

Adoption update

A more detailed update about my work as the adoption coordinator for HIV+ kids for AAI will soon be posted on the AAI blog. If you haven't checked it out yet, there are all sorts of great posts to check out about the work that AAI does, our programs and our families. :)

I have been working in this position for 18 months now and it has been very exciting to see the steady growth of interest in adopting HIV+ children, and the slow but steady increase in the number of HIV+ children we are being able to place with families.

To give you an idea of how the program has grown, in 2005, AAI placed two HIV+ children for adoption from Ethiopia. In 2006, four HIV+ children joined new families (one of which was my Belane!). In 2007, 13 HIV+ children were placed for adoption from Ethiopia through AAI, and in 2008 there were 28 (one of which was my Solomon!). In 2009 we already have 10 HIV+ kids home from Ethiopia, and another 29 children in process.

For the first time we have had paper ready families waiting for a referral of a young, HIV+ child, and we are now being able to match HIV+ infants and very young toddlers almost as soon as they are ready to be referred.

We do still have plenty of HIV+ children waiting to be adopted. At this time I have 69 HIV+ children in Ethiopia that are available for adoption, with the youngest being two and a half years old, and the oldest being 14 years old. Those numbers include quite a few sibling groups, some of which have two HIV+ children and others which have one HIV+ child and then one or two HIV negative siblings.

While things have not come together as we had hoped to place children from Hardthaven in Ghana, AAI has their first adoption of an HIV+ child from Ghana in progress right now, with several more HIV+ children hopefully being adopted soon from Ghana as well. And, we are also really excited to have our first HIV+ adoptions from Thailand just starting.

It will be wonderful to get these first HIV+ children home from Ghana and Thailand and into their new families.

As the news continues to spread that HIV is now considered a chronic but manageable condition when treatment is available, that HIV is not transmitted by any form of casual contact, and that HIV+ children are available for adoption, I am very hopeful that we will continue to see increasing numbers of HIV+ children being placed for adoption by AAI. I am glad to get to be a part of it!

If you want to read about why I believe people should adopt HIV+ kids, you can read  about it here.

And if you would like to help fight the stigma surrounding HIV that is still all too prevalent, you can  Tell Two and help spread the facts. :)

World AIDS Orphans Day

Tomorrow, May 7,  is World AIDS Orphans Day. World AIDS Orphans Day is a grassroots campaign to draw attention to and advocate on behalf of the millions of children orphaned by AIDS.

Here are some of the staggering facts. Please read them... please really stop and think a minute about these statistics.

• There are over 15 million children orphaned by AIDS living around the world RIGHT NOW. 15 million is the equivalent to the number of all of the people living in New York, Paris, and Bangkok combined. That is an awful lot of children.
• Well over 12 million AIDS orphans live in Sub-Saharan Africa, alone.
• Experts believe that millions more orphans remain unaccounted for in India, China and Russia.
• At least 10 million more children will be orphans by AIDS by 2010.

Do you know how many TOTAL global confirmed cases of the swine flu there have been? As of today (May 6), there have been 1,516 cases. Do you know how many people, world wide, have died of the swine flu as of today?? 31. And look at all the hype... all the action... all the caring.

Do you know how many people around the world DIED of HIV/AIDS in 2007? An estimated TWO MILLION people. That is over 5,400 people a day, dieing of HIV/AIDS. It has been estimated that now, in 2009, 6,500 people will die every day from AIDS, and an estimated 6,000 of those people will leave behind children when they die.

So today, another 6,000 children will be added to the already 15 million children world wide who have been orphaned by the HIV/AIDS crisis.

The result of being orphaned by AIDS is heart-breaking for these children. From the World AIDS Orphans Day website:

• In addition to the trauma of losing a parent, orphans are often subject to discrimination and are less likely to receive healthcare, education and other needed services.
• In HIV affected households lacking community support, food consumption can drop by 40% putting children at risk to hunger, malnutrition and stunting.
• Impoverished and often without support to educate and protect them, orphans and vulnerable children face increased risk of HIV infection. (And there are already an estimated 2 million children currently living with HIV).
  
• Orphans are often easy prey to many forms of exploitation: forced labor, prostitution and child soldiering.

In the United States, if a child loses a parent to accident or illness, it is considered a terrible tragedy. Such stories are covered by the media, communities mourn and show their support, etc. In Sub-Saharan Africa, parents dieing is a normal part of life. It is still a terrible tragedy for those children, but it happens so often that no one else really pays any attention.

And do you know what makes this really, truly horrible? Do you know what makes my gut twist and my heart ache? HIV IS COMPLETELY TREATABLE.

If a person contracts HIV in the United States or another country where there is treatment readily available, they have an excellent long term prognosis. Most HIV+ people receiving treatment now have close to normal life expectancies and can live in good overall health.  With treatment, HIV+ children can be healthy and happy. They can go to school, grow up, go to college, have (healthy!) children, and live long enough to raise them and beyond. Without treatment, an estimated 50% of HIV+ children will die before the hit their second birthday. My Solomon was almost one of those 50%.

HIV does not have to be a death sentence, and yet for thousands of people every day, it is, because the world doesn't care enough to really do something about it.

Can you imagine for one minute if some terrible disease struck the United States (or whatever country you live in) and was killing thousands and orphaning thousands every day? Can you imagine if another country had treatment that could lead to good health and a long life, but it just was too expensive or too difficult or too much trouble to get that medicine to us? We wouldn't stand for it.

So why do we stand for it now?

I can't wrap my head around what 15 million orphans looks like. I can barely wrap my head around the 100 or so HIV+ orphans that I am trying to find adoptive families for. The numbers are staggering, and so is the need for action. Children are the future of our world, and I shudder to think about what this world will be like with so many millions of children growing up without the love and security of a family... and way too often growing up without adequate food, education and medical care.  Where does that leave all of us?

 Rich Stearns, President of World Vision, US said,

"I believe that this could very well be looked back on as the sin of our generation. I look at my parents and ask, where were they during the civil rights movement? I look at my grandparents and ask, what were they doing when the holocaust in Europe was occurring with regard to the Jews, and why didn't they speak up? And when we think of our great, great, great-grandparents, we think how could they have sat by and allowed slavery to exist? And I believe that our children and their children, 40 or 50 years from now, are going to ask me, what did you do while 40 million children became orphans in Africa?"

I know that it feels like the problem is way too big for us to really do anything to make a difference, but I know with all my heart that touching the life of just one, just ONE, child can truly make a difference. And if everyone touched the life of just one child, we could reach them all.

Here are some ways that you can help touch the life of an AIDS orphan this World AIDS Orphans Day.

- Get educated. One of the biggest roadblocks in getting people to care and take action is the stigma surrounding HIV/AIDS. This is not a disease that only strikes those who "deserve it" (yes, that is really how some people think!). This is a disease that strikes men, women and children... it strikes heterosexuals and homosexuals, it strikes people of all races and social classes and it strikes people in all countries. HIV/AIDS is a HUMAN problem.

Fear is another big roadblock. HIV can not be transmitted in any casual way, and people that are HIV+ are not a threat to those around them. HIV can only be transmitted through sexual contact, birth, breastfeeding and blood to blood contact (such as sharing needles).

 I have written a ton about HIV/AIDS, and you can find those posts here.  Once you are educated, join my Tell Two Campaign and share the truth about HIV/AIDS with others.

Two excellent books to read about the HIV/AIDS crisis and the orphan crisis are There is No Me Without You and  28 Stories of AIDS in Africa.

- Sponsor an AIDS orphan. There are many wonderful organizations out there that allow you to sponsor a child for a very low cost per month. Doing so makes a great difference in the life of that child, and getting to know the child you sponsor through pictures, updates, letters, etc. will have a great impact on your life as well. I promise. Two wonderful organizations that I work with are AHOPE for Children (which supports AHOPE Ethiopia, a home and community support program for HIV+ children in Ethiopia) and Hardthaven, a home for AIDS orphans in Ghana. I know that financially times are hard for many right now, but we  live better than most people in the world and would have to sacrifice very very little to sponsor (and truly help) an orphaned child.

- Consider adopting. Adoption is only an option for a tiny percentage of the 15 million AIDS orphans around the world and it is certainly not the solution to the AIDS crisis or the orphan crisis, but for the tiny percentage of children who do get adopted, it changes their world and their future dramatically (and for the adoptive parents, it is equally amazing).  There are agencies and programs placing healthy and special needs orphans from all over the world with new families. If your heart may be open to adopting an HIV+ child, I have about 100 amazing children of all ages waiting for a second chance at love, family and life.

You can read here why I believe in adoption, and you can read here why I feel so passionately about adoption for HIV+ children. 

- Support From HIV to Home, an organization that helps provide care for HIV+ orphans and supports and helps parents adopting HIV+ children. They have a wonderful program to help raise money for parents adopting HIV+ children called Kids Walking Kids Home.

- Support Project HOPEFUL, whose mission is to "encourage, educate and enable parents adopting children with HIV/AIDS".

- Visit the World AIDS Orphans website for other ways to touch your heart, get educated and get involved.

Please feel free to share this post anywhere you see fit. Thanks for reading.

A question about parenting an HIV+ child

Lindsey asked, "Can you share with us what goes into caring for an HIV+ child? I know they need medication, but what else? What precautions do you have to take? IS there anything different on a day to day basis as opposed to a child who is not HIV+. Thanks!!"

Most of the information below is taken from an info sheet that I prepared for families considering (or moving forward with) adopting an HIV+ child. But to give the quick and easy answer to Lindsey's question, if you were to come hang out at my house for a day (or more) you would never be able to pick out which kids were HIV+, unless you saw them getting their meds. In day to day life, they are just like any other kid in almost every way. :)

HIV stands for Human Immunodeficiency Virus, and it is the virus that if left untreated, can progress and develop into AIDS. AIDS stands for Acquired Immune Deficiency Syndrome, and occurs when HIV advances and weakens the immune system to the point that the body can no longer fight off illness and infections.

There is currently no cure for HIV or AIDS, however, the medications that are now available to treat HIV are highly effective. HIV is now considered a chronic yet manageable condition in the United States and in other countries where treatment is readily available. Children who receive the proper treatment and medications are expected to live well into adulthood, and many people are now living with HIV for indefinite periods of time without developing AIDS. Most doctors predict that children with HIV that receive proper treatment have close to normal life expectancies.

While the term "HIV+ child" usually makes people imagine a child that is very sickly, the reality is that most children who are HIV+ and are receiving the anti-retro viral medications (or do not yet need them), look just like any other child and live in good overall health.

Parenting a child that is HIV+ is not much different than parenting a child that is not HIV+. Most children who are HIV+ and are on medication (or do not yet need them) do not require much special treatment or medical care. When HIV+ children are on their medications they generally enjoy very good health and do not need to be isolated from other children or be treated differently.

There are three things that parents must do differently with HIV+ children than they would with their other children. Those things are:

- Handle blood with care.

- Give their child medications.

- Take their child for frequent doctor appointments and blood tests.

Handle blood with care - It has been shown that HIV is not spread through casual contact, and that it is only spread through sexual contact, birth, breast milk and blood to blood contact (such as sharing needles). Children who are HIV+ can share food, drink, bath tubs, swimming pools, towels, beds, toys and all other household items with their family members and friends without risk.  Parents do not need to worry about HIV beings transmitted through urine, stool, tears or sweat.

The one area that parents need to use caution is when handling blood. When a child that is HIV+ has an injury that is bleeding, it is usually recommended that the parent or caregiver wears rubber gloves while treating and covering the injury. Any surfaces that get blood on them should be treated with bleach. Paper products such as paper towels, tissues, etc. used to clean up a blood spill should be double-bagged and thrown away. Any clothing that gets a significant amount of blood on it should be washed separately or thrown away. Cuts, scrapes and open sores should be covered.

Since mouths often bleed easily, tooth brushes should not be shared, nor should razor blades for obvious reasons.

While it is recommended and wise to handle the blood of an HIV+ child with care, it is also helpful to know that HIV is a very fragile virus outside of the body and the risk of transmitting HIV through a bloody nose or skinned knee is extremely miniscule. This is especially true for a child that is on HIV medications, because the medications can reduce the amount of HIV in a person's system to the point that the HIV is considered "undetectable", meaning there is only a very tiny amount of virus in the person's system.

It is very simple for parents of HIV+ children to prepare a small first aid kit in a Ziplock bag that contains a pair of rubber gloves, band aids, paper towels, gauze, tape, ointment, a second sealable bag for garbage and a few Clorox wipes. These small and light weight first aid kits can be kept in a purse, glove box and bathroom cabinet so they are ready in case of an injury at home or on the road.

Giving Medications - The only other aspect of daily life that is regularly affected by a child being HIV+ is the fact that they need  to be given their medications every day at the scheduled times once they have been started on their meds. While many adopted HIV+ children come home and start their medications right away, some families are finding that the doctors are waiting to start treatment because the child is living in good health without the medications.

Once a child is started on HIV medications, it is very important that they are given as directed. Most pediatric regiments require two medications being given in the morning and three medications being given in the evening, with a 12-hour space in between. Giving the medications at the scheduled times and giving them every day without regularly missing doses is essential so that the medications work as well as possible and so that the HIV does not become resistant to the medications. There are many simple strategies such as wearing a watch with two different alarms, that parents can use to ensure that their child's medications are given on time.

Medications are available in liquid and pill forms and most children get into a routine of taking them without any problems. Many of the medications do not need to be refrigerated. Giving your child his or her HIV medications takes just a few moments in the morning and then again in the evening. Children tend to do very well on the medications and experience fewer side effects than adults. Normally if a child does experience side effects, they only last for the first two or three weeks that the child is on the medications and then they disappear.

Doctor appointments - Children who are HIV+ typically see a Pediatric Infectious Disease doctor or another similar specialist four times a year. At these appointments the child is checked for physical symptoms, growth, development, etc. and the family is asked about any illnesses, symptoms, side effects or problems. The children also have blood work done in conjunction with these appointments to have their CD4 count, CD4 percentage, viral load and other counts checked. These tests show how well the HIV is being controlled and alert doctors of any complications, when a change in medication is needed or when it is time to start medications.

Sometimes when a child has been on medications for a period of time and doing well consistently, doctor appointments can be scaled back to two or three times a year instead of four.

Disclosure - One of the biggest areas of consideration for parents of HIV+ children is disclosure. It has been said by many parents that often the social aspect of dealing with a child's HIV status are more challenging than dealing with the medical aspects. Unfortunately even in this country there is still significant stigma against people who are HIV+. Many people are uneducated about HIV and still believe in falsehoods such as HIV being a death sentence and that HIV+ people are a threat to those around them. Many people do not fully understand how HIV is and is not transmitted and therefore are still needlessly very afraid of HIV.

Because of the stigma that still exists against HIV+ people and because parents do not want their children to be discriminated against in school, sports, day care, etc., parents need to put a lot of thought into who they do and do not tell about their child's HIV status. Every state has laws protecting the privacy of people with HIV, and very few people in a child's life really need to know.

That being said, many parents have also found that by being open and honest about their child's HIV status, they have been able to educate many people in their child's life and do not have to live in fear of people finding out that their child is HIV+.

There is no one right or wrong way to deal with the issues related to disclosure.  They are something that every family must evaluate based on their unique circumstances.  Online parent support groups and local AIDS support groups are often helpful sources of information about how other families have dealt with disclosure in their own extended families, with friends and in the community. 

More HIV questions and answers

I am still plugging away at answering all of the great questions  readers have left. Here are a few more questions (and answers!) related to HIV.

"I have a question about HIV that I've wondered for a while.  Once someone goes from HIV+ to getting an AIDS diagnosis, is it possible to go back?"

The way that HIV and AIDS are classified, a person always carries the diagnosis of their "worst point", so if a person that is HIV+ has their CD4 count and their CD4% fall below the set levels and has one or more AIDS defining illness, then that person has an AIDS diagnosis and always will.

However, beyond that classification and diagnosis, it is definitely possible for someone who is very sick (and diagnosed with AIDS) to receive treatment, strengthen their immune system and regain good health. (Although again, they would still "technically" have AIDS, even though they could very well be in as good of health as someone who "only" had a diagnosis of being HIV+).

For example, our sweet Solomon has an AIDS diagnosis because of how low his CD4 counts and CD4% were when he was first found in Ethiopia, and because he also had several of the AIDS defining conditions. However, since he has now been on the ARVs for over two years, his immune system is stronger (no longer below the levels that would classify him as having AIDS) and he is in good overall health. He still technically has the AIDS diagnosis, but he is not currently that sick (or anywhere near tht sick).

I asked our Pediatric Infectious Disease specialist how Solomon's long term prognosis differed from Belane's (who has never been very sick and has never had a significantly compromised immune system so does not have an AIDS diagnosis) and he said that as long as Solomon stays healthy while his immune system continues to improve, with continued treatment, his long term prognosis is just as optimistic as Belane's is. 

At this point his CD4 counts are good, but his CD4% is still quite a bit below where it should be (and where it needs to be for him to have a strong and healthy immune system), however his viral load is undetectable and despite catching minor illnesses fairly constantly, he is in very good overall health, he is developmentally on target, he is growing, and he is one happy little dude. :)

The doctors are confident that over time, his immune system will continue to slowly improve and get stronger and that he will be able to live a long and full life.

You can find more info on the CDC's Classification System for HIV here and about AIDS defining illnesses  here.

"What are some of the side effects of being on ARV meds for a lifetime?"

Anti-retroviral medications/drugs (ARVs) are taken by people with HIV. Some people have to start the medications very quickly after infection or would become very sick and die, and others go many years without needing to start the medications. Once they are started, they generally need to be taken twice a day, every day, for life.

Like all medications, there are possible side effects to ARVs. Most common are nausea and feeling tired, although for many people (especially children) side effects are more common in the first few weeks of being on the medications, and then once the body gets used to the medications, the side effects fade or disappear completely. Some people do end up having severe side effects to one of their ARVs that are difficult to live with. Luckily, now there are many different ARVs available, and if someone is having a very difficult time with one medication, there are other options to switch to.

As far as long term side effects from the ARVs, since HIV/AIDS is still "young" as far as diseases go, there aren't any people around who have taken the currently available ARVs for twenty plus years. However, some of the possible long term side effects from being on ARVs include liver or kidney problems, chronic anemia and lipodystrophy (a condition involving unnatural loss of fat from one place of the body).

While taking any medications for life is likely to have some effects on the body and side effects can be challenging, many HIV+ people do very well on their ARVs and don't live with chronic side effects, and the benefits of ARVs far outweigh the risks for people living with HIV. Thanks to ARVs, what was once a certain death sentence is now a chronic but manageable condition.

"I was wondering how you went about telling your parents and close friends and family that the children you were adopting were HIV+? Did you sit down with them and explain?"

When we finally made the decision to adopt Belane, I worried a great deal about telling our family. None of our family lives close enough to have over for dinner or anything like that, so we didn't tell anyone in person. Some of our family seems to prefer getting information that may be challenging by email, so they have time to "digest it" and think about it before they have to respond to us. So we put together an email about meeting Belane and some facts about HIV, etc. and sent it to a hand-full of our closest family members.

Some of our family we did call and tell over the phone. I remember being so worried about what my Dad would say. His approval means the most to me, and I was really concerned about what he would think of us adopting a child with HIV. I called him and he actually asked, "Any new grandkids I need to know about?" He was joking, but with that kind of opening, I had to push aside the nerves and tell him.  After telling him a bit about Belane, I told him that there was something else about her I had to tell him. I am sure he could tell by my voice that I was nervous and that I thought he would think it was a big deal. I told him she was HIV+, and he said (and I quote), "So what?" And he's been super supportive from that moment on.

We did provide information to the family members that we talked to and the ones that we emailed.  We didn't expect them to be educated about HIV (although some were!) because a few months earlier, Josh and I had not known much at all about the the realities of HIV. 

And as I wrote about in this post, all of our family have embraced Belane and Solomon with open arms. :)

As we tell new people now, we do it very matter of factly, and are always open to provide info, answer questions, etc.

Questions and answers on HIV

Here are a couple of HIV related questions that I was asked. Please feel free to add to these. Also, I have written a lot about our personal experiences and "informational" posts on HIV and you can find all of those posts by clicking on "HIV" under categories. :)

"I have a question about the financial aspect of adopting an HIV+ child. We have adequate insurance coverage in general, but our prescription coverage is negligible. Though I'm sure it varies, how much might one expect to pay monthly for that miraculous medicine? Outside of changing insurance coverage (I'm not sure of the options there, as it's through my husband's employer) are there any ways of which you know to defray those costs? Thanks for any thoughts!"

The average costs of pediatric anti-retro viral medications (without any insurance) is approximately $700-$1500 a month. A lot depends on which medications your child is on, if generic versions are available, etc. To be allowed to adopt an HIV+ child internationally, you do have to show proof of health insurance that will cover an HIV+ child. What portion of those expenses will be your responsibility depends largely on your insurance plan and your prescription coverage, deductibles, maximum out of pocket, etc. 

On top of the medication costs, parents should be prepared for the expense of at least four specialist appointments a year (likely with a Pediatric Infectious Disease doctor) and lab work done at least four times a year. Without any insurance, our doctor appointments are $200 a month and the lab work is usually about $400-$700.

There are many programs out there to help cover the costs of caring for an HIV+ child. Each state has their ADAP (AIDS Drugs Assistance Program) and Ryan White programs. Now the requirements to qualify vary greatly by state... some states all you need is an HIV+ diagnosis and you qualify for the program, some states have very generous income requirements and other states have very stingy income requirements. You can look up the details for your state by looking on your state's Public Health website and looking for ADAP and/or Ryan White program information.

I know several families that get financial assistance through their children's hospital as well. This also, of course, varies by where you live.

It may also possible for children with HIV to qualify for Social Security Income payments. (We have not looked into this further yet, however according to the SSI website, HIV is a condition that they consider qualifying for children under 18.)

Another option is that some of the drug companies that make the ARVs, such as GlaxoSmithKline have programs to help families cover the costs of HIV medications.

So, there is a lot of help out there however it is important to remember that funding for these programs change and there is no guarantee that any "help" will be there long term. When families contact me considering adopting an HIV+ child, I always recommend that they are prepared and able to cover the expenses of caring for an HIV+ child with just the "help" of their health insurance if needs be, and then if any other programs/help are available, that is a bonus. :)

It is important to note that you MUST have health insurance to be able to adopt an HIV+ child internationally, and part of the visa/waiver process currently required is to prove that you have health insurance and adequate income as "proof" that the child will not become a "public burden".

"I know that you have wonderful extended family, but has there been anyone (whom you actually care about their opinion) who has said, "Nope. We can't embrace the HIV+ kids." I'm talking literally and/or figuratively. What have you done about that, and how did/did not that kind of attitude affect your decision to adopt them? I know that you felt like they were yours already and that you were going to get them despite what anyone else said, but still--did you have anyone whom you cared about who made it difficult emotionally for you to do that?"

The honest answer to this question is simply, "No." We have not had any family members, friends, neighbors or anyone else reject our family or children because of HIV. There may be some of my extended family who are less than thrilled, but they are people who we don't see or interact with almost ever, so it really doesn't matter.

We did have family members and friends who were concerned when we first talked about bringing home Belane, but they were all very open to receiving the information we provided, and we were actually really impressed and grateful for how open they were and how supportive they were.

Of course when we decided to adopt Solomon, the HIV issue was already "not a big deal" because we had had Belane home for some time.

However, if some of our family members had taken the attitude that they just wouldn't be able to accept an HIV+ child in our family, it would not have changed our decision to adopt Belane (and in fact we were somewhat prepared for that reaction). By the time we told our families, we were 100% committed to her and knew that she was ours, and there was no backing out. Josh and I had to make the decision that was right for our family, and we made that decision on our own, and then shared it with our family once we were decided. We know our families and our close friends, and we knew that the people that mattered would (eventually) be ok with it.

I have worked with some adoptive parents who have had a very difficult time with their extended families accepting the idea of an HIV+ child in the family. I have worked with adoptive parents who have had family members tell them that they just would not accept an HIV+ child, and that the child would not be welcome in the extended families' homes, etc.  It can be very heartbreaking for the family.

In almost all of the cases however, once the child was home, people changed their tune. I have heard time and time again from adoptive parents with extended family members who were very unsupportive and outspokenly against the adoption of an HIV+ child, that once that child came home those people became very loving and supportive.

I truly believe that these kids are wonderful advocates for themselves. Once someone SEES first hand how beautiful, happy, healthy, full of life and "normal" these kids are, it is very hard to look at them and see "HIV", and it is very hard to be afraid of them or to avoid them.

The social aspects of living with HIV... disclosure, stigma, etc. are often very difficult and challenging for parents of HIV+ children. Who to tell, who not to tell, dealing with the lack of education and unnecessary fear surrounding HIV are all big, tough issues. Parents of children living with HIV have to find the right balance for their child and their family between protecting their child, building their child's confidence, helping their child feel ok about being HIV+, and (I believe) making the world better for that child to grow up in by working to fight the stigma and fear with education. I have been told by many adoptive parents of HIV+ children that in their experiences, the social aspect of living with HIV is much more challenging than the medical aspect, which is just sad.

I believe with all my heart that all kids, but especially children who are HIV+, need a good, strong, loving family and support group behind them to help them face all of the challenges they will face in their lives.

We are very grateful to all of our family and friends who have welcomed Belane and Solomon with open arms and who see them for who they are, and not for the disease they were born with.

Bottles

The other morning I was opening up the kitchen cabinet to the right of the sink as I do every day at 7:30 a.m. and 7:30 p.m., to get Belane and Solomon's ARV medications ready for them. Most often I go through the routine without even really thinking about it, but that morning I paused as I opened that cabinet, looking up at the shelf filled with bottles of medicine, and felt the tears burn hot in the corners of my eyes.

This time I wasn't sad or overwhelmed with the thought of how truly my children's very lives are dependent on those bottles, I was instead overwhelmed with gratitude that all of those bottles were there. I thought of the miracle that those bottles are. What was once a death sentence, is now manageable because of those bottles. There is hope, optimism and a future for people living with HIV because of what those bottles contain.  I thought about all of the children who have lost their parents and all of the parents who have lost their children, because they didn't have access to bottles of life-saving medications. I thought of whoever loved and tried to care for my Solomon before he was abandoned, and how they had to watch him wither away because they didn't have those bottles. I thought of how very, very lucky I am as a parent to have those bottles for my children and to know Belane and Solomon have every chance to live a long, full and healthy life.

And not only do I have a cabinet full of those bottles, but a brand new box full of them is delivered to my door every month, insurance covers the costs, and we have a month of extra bottles "just in case".

According to the UNAIDS/WHO statistics published in July 2008,  only 31% of people living with HIV/AIDS in developing countries  are receiving the life-saving medications that they need to survive. Can you even imagine for a moment if less than a third of the people in the U.S. that had cancer had access to treatment? If less than a third of Americans with diabetes were able to receive insulin?  Could you imagine watching your family die, while knowing that out there somewhere, there were medications  that would allow them to live a long and full life?

 In 2007, over one quarter of a MILLION children died of AIDS. That is over one quarter of a million children who could be alive and well today, if only those bottles of life-saving medications had been available to them.

With all of that swirling around in my head, I was humbled with gratitude to live where I do and have all of the very many blessings and luxuries that I do, and to be standing there looking up at that shelf full of bottles.

Hope - a little girl in China

Almost a year ago I posted about how Adoption Advocates International was given the wonderful opportunity to be able to place an HIV+ child for adoption from China, after sharing with officials in China how successful we have been in placing HIV+ children with loving families from Ethiopia. We were referred one little girl and asked to find her a home, which we were confident we could do quickly.

We were able to find her a family fairly quickly, however after committing to her and having her on hold for many months (to work on the paperwork) the family just recently let us know that they are no longer interested in adopting her.

"Hope" was born in April of 2006. She has a unique story, as we are not quite sure if she is HIV+ or not. She has had two positive HIV tests (including a DNA test) and two negative HIV tests, and she will most likely not be tested again until she is coming home to her new family. We need a family that is willing to adopt her and know that it is possible she is HIV+ and possible that she is not. She is in very good overall health and has normal development, and she is the most beautiful little angel.

We are very sad and disappointed that the first adoptive family for her fell through and that she has been waiting so long, and now we very much want to get this sweetheart placed as soon as possible. We would love to have the opportunity to regularly place HIV+ children from China, however, we first need to find a home for this one beautiful little girl.

If anyone is interested in her or knows someone who may be, please email me at Erin @ adoption advocates . org  (without the spaces)

FYI, the requirements to adopt from China are

- parents need to be between the ages of 30 and 55
- smaller families preferred... usually 5-7 children in the home is the maximum
- couples must have been married for at least two years, and if there was a previous marriage for one or both parent, they current marriage must be at least five years
- parents must have a BMI (body mass index) under 40
- couples must have a net worth of at least $80,000 and a minimum of $10,000 annual income per family member, including the child to be adopted

Please feel free to link to this post on  your blogs, email groups (if permitted), etc.

Why adoption

This Christmas was Solomon's first Christmas in America. It was emotional to think about where he was a year ago, and even more so to think about where he was two years ago, and the terrible physical and emotional condition he was in. It seems truly a miracle to look at his life then and to look at his life now, and it is a miracle I am so grateful to get to witness.

Thinking about Solomon and his first Christmas, I could not help but think about all of the very many children who are still waiting for a family to love them this holiday season. There are children all over the world who are spending this holiday season without the love of parents, without a true home and without somewhere to belong. It just feels so "wrong" to my heart and to my mind that there are so many children living right now without a mom and a dad.

I especially think about the kids at AHOPE... the older kids who wait and wait to be "chosen". I think about how smart they are, how caring they are, how funny they are and how very much potential each and every one of them has. I think about the hope that they have, that one day they will get the news that they will once again belong to a family. These are kids that I have spent time with. These are kids who have told me what they want to be when they grow up, what they like to eat and what they like (and don't like!) about school. I have played with them and cuddled with them. These are amazing children! How can they have to go through life, fighting the HIV virus and all that goes along with that, without the love and support of a family?

I think of all of the kids at AAI's Layla House, and  especially so many of the wonderful older kids who wait and wait for a family.  I have spent time with these kids. They have braided my hair and helped me with my baby. They have played soccer and basketball with my husband (and shamed him!) I have heard them sing, watched them play and I have seen the pain in the eyes as yet another set of adoptive parents arrive who aren't there for them.

This holiday season, my heart rejoices for my Solomon and the many other children and families I know who are celebrating their first Christmas together, and the miracle of love and family with a child who not very long ago lived without those things. And at the same time, my heart aches for all of those kids who are still waiting for their own miracle.

Someone recently asked me "why" I was involved in international adoption, and why I thought it was "ok" for Americans to adopt children from other countries. It got me to thinking about this old post that I wrote on the very topic. I wrote the post below at the end of October 2006, when I was in Ethiopia adopting Belane. At that time the media was having a field day questioning the ethics of  international adoption because of high profile adoptions by Angelina and Madonna. My feelings are the same now as they were then... (And I hope it goes without saying since we have adopted three kids from the U.S., that when it is ethical, of course I 100% support adoption of children in the U.S. as well). I believe all kids everywhere deserve love and family.

Oct. 2006

There has been a lot of “debate” about how “right’ or “wrong” it is for Americans to adopt African orphans in the media lately…brought on no doubt by the Material Girl herself.

I wanted to give my thoughts on this, as an American adoptive mom, who is actually in Africa right now.

I have said numerous times on my blog that I do not believe that international adoption is the answer to the problems of poverty and famine and illness and all of the other tragedies of society that are plaguing so many parts of the world.

I believe the a child’s culture and country of birth are a very important piece of who they are, and that a nation’s children are one of their greatest assets and resources, and they should be kept in their families, countries and culture if at all possible. I honestly believe that international adoption should be a last resort.

But unfortunately, the truth is that the world is full of children right now who are at “last resort”. There are children with no parents, no security, no love and no hope for their future. With little or no opportunities for medical care or education, no family support, and rarely any support from their communities, the future is so very bleak for these children.

When I hear people who “oppose” international adoption, I wish that they could be where I am, and see what I have seen this week. I wish that they could look at a floor mat full of gorgeous babies, all without mothers to hold them and rock them and feed them. I wish that they could be in a room full of toddlers, hanging on your arms and legs and calling “Mom” and doing anything they can for a moment of attention. I wish they could see the crumpled faces and hear the heart breaking cries of those toddlers when they are put back down, and their fleeting moments of attention are done. I wish that they could look into the eyes of the older children…all the very many older children…and hear them ask the orphanage workers, with hope in their voices, if they have any news of “a family?”

I wonder then, if the “opposers” could look into the eyes of these children, if they would still say that they should stay where they are. If the children were real, and not just numbers, would they still feel that life in an orphanage is a better alternative to a loving family in another country? It is easy to say that they should stay with their first families, but for way too many, that is just not possible.

It is a great loss when these children are taken from the land and culture of their birth, and one that should not be ignored or underestimated, but I believe it is a much greater loss for these children to never have the opportunity for love, and home, and family, and an education, and medical care…for a life in which they are not all alone in the world.

How much worse off will our world be if millions of children grow up without ever having love and someone to belong to?

Life is not perfect. Adoption is not perfect. But I believe that it is the best option for many orphaned children in Africa (and many other places in the world), because the alternative is too sad and too heartbreaking to permit.

I have seen these children. I have spent time with these children. They want to be adopted. They hope to be adopted. I have not met one child yet while here in Ethiopia that sits in the orphanage and hopes that they never get chosen so that they can stay here.

I believe while losing their homeland and culture and familiar life will be difficult and sad, and that being in a transracial family will certainly have its issues and challenges, that those loses and challenges are much easier to bare than growing up one of countless other orphans with no love and no security. Being loved and having a place to belong has got to be the better option. I believe that with all my heart, and that is why I am here right now.

We have to join together and work together to find ways to help the countries and families. We have to help find solutions to keep parents alive and families together, and to find ways to better the economic conditions so no parent ever has to give up a child simply because they cannot feed him. We have to try and work towards solutions to prevent future orphans from being created.

But while we are working on these things, there are children waiting now…children who it is too late for…whose families are gone or unable to care for them, and whose villages are full of so many like them that they cannot take them in.

International adoption only touches a tiny percentage of those children around the world. The problems in society seem too big to even begin to tackle, but we must look at it as you would “eating an elephant”…one small piece at a time.

Every time a child is sponsored so they can remain in their family and stay in school, every time an animal or livestock is donated to a poor family in a developing country, every time a single mother is given the resources she needs to allow her to parent her baby if she chooses, every time medications are made available to people in developing countries, every time people are educated about how HIV and other diseases are spread, every time prenatal care is provided to help keep mothers alive to parent their children, every time someone decides to care…we take a bite out of that elephant.

While I have been here in Addis, I have had an overwhelmingly supportive reaction to our adopting Belane. Several well-dressed and well-educated Ethiopians have stopped me to say that they think adoption is a “blessed thing” and a “wonderful thing” and that they are grateful that Americans and others care about the orphans in Ethiopia and are sad that Ethiopia is unable to care for its children.

I’ve been thanked for taking her (and these people do not know she is HIV+). One woman with very limited English stopped me to say (while pointing at Belane), “Baby has no mother in Ethiopia. Adopt is very very good. You good mother. You love her. She loves you.”

I always tell everyone here who stops to talk to me about adoption or Belane that we love her beyond words and are so grateful to have her…that we are lucky and we are blessed…and we are. When we get on that plane, Ethiopia will be losing one of its most perfect, special and amazing children.

We will raise her, as all of our children, to be proud of who they are and where they came from, and to know how amazing the people are here and the many special things about the place she was born. She’ll know about the wonderful people who did their best to care for her once she was orphaned. And she’ll always know she is loved.

So to me, all this pop-star induced debating about the morals and perils of international adoption should boil down to two things…children and love. Children need to be loved. Children deserve to be loved. Adoption is a way to give some children the love they need and deserve, when they would otherwise live life without it.

Adoption must be ethical and legal, and it should always be a real last resort for true orphans. Adoption should always be about finding homes for children in need and for children who have no other option. Under those conditions, I don't see what is left to argue about.

Today is World AIDS Day

Today is World AIDS Day.

It is an emotional day for me for a lot of reasons.

I have been thinking a lot about all the loss that three of my kids have suffered because of HIV/AIDS. I've been thinking a lot about how two of my kids will have to live their entire lives with this disease. I've been thinking about the devastation HIV/AIDS is causing all around the globe. Of course I am thinking about all of the HIV+ orphans who are hoping for a second chance at life, love and family.

I have also been thinking about how there is an overwhelming need for education and information about HIV/AIDS all over the world and my hope for today is that awareness and education will be shared and spread.

While tackling the HIV/AIDS crisis is far from simple, to me, it boils down to two main messages that people everywhere need to hear. We need to spread information to help STOP the spread of the HIV pandemic, and we need to spread information to help make the world better for people who are already infected and have to live out their lives with this disease.

People need to understand the importance of safe sex, not sharing needles and having themselves tested for HIV.  The Center for Disease Control (CDC)  recently published information on national HIV incidence (new infections) that showed an estimated 56,300 new HIV infections occurred in 2006 in the United States, which is a substantial increase to previous estimates. People NEED to know how to protect themselves and how important it is to be tested and to know your status. We need to do all that we can to stop the spread of this pandemic, that is literally killing millions of people around the world every year. There are an estimated 33 MILLION people on the planet living with HIV/AIDS right now (with an estimated one million of those in the U.S.), and an estimated two million people around the world die of AIDS every year.  That is way too many people.

People also need to understand that facts about transmission, so that the 33 million people on this earth living with HIV, do not need to suffer socially and emotionally from the terrible stigma associated with HIV/AIDS, on top of having to live with the medical ramifications of the disease. If you need the info, or want it to share, you can check out this post here that has the information on transmission that I wish all people knew.

Even though HIV is a preventable and treatable disease, every 12 seconds someone contracts HIV and every 16 seconds someone dies from AIDS.

Education is the key to slowing, and hopefully one day stopping, the spread of HIV. Education is the key to fighting the ugly stigma associated with HIV, which is based in unnecessary fear. People need to understand. People need to care.

The good news is that it is known exactly how HIV is and is not transmitted. With very basic strategies, you can completely protect yourself from HIV.

AIDS.gov states that,

"HIV and AIDS are life threatening conditions. There is no cure yet for HIV/AIDS. The transmission of HIV occurs through three well documented means: 1) having sex (anal, vaginal, or oral) with someone infected with HIV; 2) sharing needles and syringes with someone infected with HIV; and 3) being exposed (fetus or infant) to HIV before or during birth or through breast feeding. HIV transmission can be prevented through avoiding behaviors that expose someone to the means of transmission and by taking preventive measures if identified risk behaviors occur.

To protect yourself, do not inject illicit drugs and remember these ABCs:

• A=Abstinence
• B=Be Faithful
• C=Condoms

HIV is not transmitted through day-to-day activities such as shaking hands, hugging, or a casual kiss. You cannot become infected from a toilet seat, drinking fountain, doorknob, dishes, drinking glasses, food, or pets. You also cannot get HIV from mosquitoes.

For more information about HIV transmission, please visit the Basic Information section about HIV/AIDS from the Centers for Disease Control and Prevention."

Of course there are many other "needs" too... We need life-saving anti-retroviral medications to be more readily available around the globe. We need medical professionals experienced in treating people with HIV working all around the globe.  We need funding to continue developing new and better medications, a vaccine to prevent the spread of HIV and hopefully, one day, a cure. 

There are many significant challenges to fighting this pandemic. Corruption in governments, lack of women's rights, poverty, other diseases, the stigma surrounding HIV, and ultimately, a lack of caring by many, all make the battle a lot more difficult. 

I asked myself what I could do for today... World AIDS Day. Our local newspaper has been asking us for two years to do a story. We have resisted, out of fear of being that "open" here where we live. I have written a lot about how we feel about and are dealing with disclosure, and started feeling that maybe it was time to take the plunge and do a story locally. I talked to some of our friends that live here, and they all seemed to think that most people already knew about our family living with HIV (which was encouraging because we have only had one minor negative incident) and they thought that sharing our story and some basic, accurate information in our local paper would be a good and helpful thing.  

We decided we'd do it for World AIDS Day, and the story came out in our Thanksgiving edition of our weekly paper. We shared the story of how we met and fell in love with Belane, and then how we educated ourselves about HIV/AIDS. We shared the story of Belane's adoption. We shared the story of meeting Solomon, and ultimately going back and adopting him as well. We also shared the basics on HIV, including transmission. Unlike the AP article (which I wrote about  here and here), I got to write this article, and we had complete control over what was told, how it was told and what information was given.

Since readers of this blog already know our story I won't repost the whole article, but here is a small excerpt from the end.

"While medically speaking, HIV is typically relatively easy to live with (often considered much easier to manage than diabetes, hepatitis and many other conditions), socially, there is still a nasty stigma and a great amount of ignorance and unnecessary fear surrounding the disease. Many people living with HIV feel that dealing with the social and emotional aspects of the disease are much more challenging than dealing with the medical aspects.

Our greatest fears as parents of Belane and Solomon do not involve their health, but how people will treat them.

We believe that educating people, and providing accurate information about HIV, is the only way to fight the stigma, and hopefully make the world a little easier for our children to live in."

And we do believe that, with all our hearts. We need to make people understand, and we need to make people care.

I was uncharacteristically nervous about how the article would be received by our community. I had nightmares about it and at the last minute had second thoughts.  But Josh was confident it was a good thing, and several of my dearest friends reassured me as well.

So far, the response we have had has been amazingly supportive and uplifting. In fact, we haven't had a negative reaction or response yet (although I'll be shocked if we don't). In church yesterday, a neighbor (and Belane's Sunday school teacher) went out of her way to tell me what a great job I did writing the article, and how cute the picture of Solomon was, and then she sat through Sunday school with Belane on her lap. 

I realize that we can't educate everybody, we can't make everybody care and that there will always be people who choose to live in fear, however I can't help but feel that we have done a little bit of good.

What can you do today? Share information. Wear a red ribbon. Educate yourself about HIV/AIDS. Educate others. Care. Look at HIV as a human problem, not just "other people's problem".

If you want some true inspiration, visit Yahoo's World AIDS Day page and hear the stories of some truly amazing and brave people living with HIV/AIDS.

If you're looking for more information on HIV/AIDs, World AIDS Day or ways to get involved, here are some great websites.

Avert, an international AIDS charity

AIDS.gov

CDC fact sheet

Today, if we all just spend a little time educating the people around us, and we all take the time to care just a little, we may just be able to make a big difference.

The Hardest Part

I recently got an email from someone considering adopting an HIV+ child, and among the long list of questions was, "What is the hardest part of having an HIV+ child?"

The question has been rolling around my  head ever since.

As an advocate for HIV+ orphans, I don't want to be over dramatic and make it all sound harder than it really is (because really, most days, parenting my kids that are HIV+ is not any different than parenting my other kids). On the flip side, I don't want to sugar coat things, and I do want to be open and honest about what is hard.

So what is the hardest part about having an HIV+ child?

It could definitely be disclosure. Do you tell people that your child is HIV+ and risk them being treated badly because of it? Do you keep it a secret and risk them growing up feeling they have something to be ashamed of? There are people who feel very strongly both ways. There are people who agree with the way we have chosen to handle it and there are people who feel very strongly that we are going at it all wrong. Since there is no "right or wrong" way to handle it, you have to just go with what feels right to you and what you believe is best for your child and your family, and hope you made the right decision. That is hard.

Dealing with the stigma surrounding HIV/AIDS, and knowing that your child will have  to live with that might also be the hardest part of having an HIV+ child. There is so much ignorance surrounding HIV. Many people still believe it is a death sentence.  Many people still believe you can "catch it" like you can catch a cold or the flu. Many people believe that it only affects gays, drug users and people in Africa. Some people believe it is actually a punishment from God. Some people believe HIV was created by the drug companies. Some people think we are saints for adopting our kids (we aren't). Some kids think we are NUTS for adopting our kids (we aren't). Many people are afraid to be around people who are HIV+,  and many people don't really know and don't really care about the realities of HIV/AIDS. My kids who are HIV+ will face discrimination because of the disease they were born with, and they will have extra emotional and social challenges in life because of that disease. That is hard.

While HIV is very medically manageable now and people who are HIV+ are living indefinitely without developing AIDS, it is still a chronic condition without a cure. While my children are expected to live in great overall health, they do still have to take medication twice a day, every day, for the rest of their lives. They do have to go for  blood tests and doctor appointments quarterly, for the rest of their lives. Yesterday it was such a BIG DEAL for me and for Marcus that he had to get his blood drawn.  But as Belane pointed out, "Marcus got poked one time and he is done. Me and Solomon get poked over and over and over and over." That is hard.

Sometimes I read an article about HIV and I think about what a nasty virus it is and how many millions of people are dieing because of it. Solomon almost did die, before his first birthday. The reality is that without medications, Solomon and Belane would get very sick, very quickly, and die. That is hard... really hard... to think about.

I think all parents want life to be as easy as possible for our kids. We want to give them every advantage. We want them to thrive and enjoy life and suffer as little as possible. When I think about the stigma surrounding HIV/AIDS and I think about the extra challenges my kids will face in life (medically and socially) because they were born HIV+, it makes me feel sad. Life will have extra challenges for some of my kids because racial discrimination is still alive and well in our country. Many of my kids have experienced grief and loss that is a part of their lives. And I know life will likely be harder in some ways for Belane and Solomon than it will be for my other kids because of HIV/AIDS. That is hard.

But the thing is, and what people need to know, is that despite the things that are hard about having HIV+ kids, the hard things just don't compare to the joy, happiness, blessings and love that these kids have brought into our family. Most of the time they are just typical kids who laugh, run, play, get put in timeout and act like any other little kid. Yes, there are aspects of being their mom that is hard and complicated at times, and yet I would never, ever change the decision to bring them into our family. In fact, it hurts to imagine our family without them and all that they have brought into my life. I am a better person because of them.

While I can not deny that there are aspects of parenting HIV+ kids that are truly hard, the overwhelming emotions I have when I think about my Belane and my Solomon are love, hope and gratitidue. I love them more than I could ever put into words. They have taught me many lessons about life, especially about hope. And I am eternally grateful that I have the opportunity to be their mom. The love, hope and gratitude far outweigh the hard parts.

HIV+ orphaned children deserve to be loved. They deserve to belong to a family. They deserve to have a real chance at a long, healthy, happy life. For these reasons and many others, I advocate for adoption for HIV+ orphans. Adopting an HIV+ child is clearly not right for everyone, but for those who are willing to take on the "hard parts",  you will be blessed countless times over.