Tag Archives: HIV/AIDS Adoption

MSNBC Article

4 Apr

More U.S. families adopting HIV-positive kids

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Heart towards Ethiopia

13 Mar

This week  my husband, Lance, is in Ethiopia on a mission trip with some of our college students from our church.  He will be leading pastor training in a church about 9 hours out of Addis until Thursday.  Then they will visit Noel’s former orphanage in Addis and on Friday they will be spending the whole day feeding and ministering to people with HIV/AIDS.   I wish I could have joined him on this trip, but I needed to stay home with the kiddos.

Noel has changed our lives in so many ways.  One of the ways she has is that Noel made the HIV/AIDS crisis personal to us.  An AWAA family, (one of my “bloggy friends”) talked about how orphans and people in poverty became personal to her family.  It was a great post.  It really made me think about how much my heart has changed for the person with HIV/AIDS.  Just about 3 years old I would have never of thought much about the people with HIV/AIDS.  Now I probably don’t go a day without pondering or praying for the crisis in some way. 

I think about all people affected by the virus, but really think about the little infants and children facing this illness without parents in an orphanage.  Noel’s body has had such a hard time recovering from the damage the HIV virus did to her that first year of life before medication.  She is also so delayed from her two years living in an orphanage.  However, Noel is remarkable.  She has a long way to go, but she has already overcome so many things.  She is an absolute delightful child.  We are so proud of her.  We can’t imagine not having her.  We think of all the other little “Noels” with HIV out there in desperate need of a better chance at life.

Ethiopia last week changed some things that would drastically slow down their adoption process.  Project Hopeful sent out an email that shared about this better than I can:

Project Hopeful has been greatly concerned about the recent turn of events in Ethiopian adoptions as the US State Department confirmed that the Ethiopian government plans to reduce international adoptions by up to 90% effective immediately. Some have estimated that this could increase the wait time for an orphan child to be adopted as much as seven years.

It is clear no orphan has that kind of time to spare. They all deserve families immediately. But for orphans with HIV/AIDS the wait could absolutely be the death of them. That’s because institutional life for children with HIV/AIDS is particularly brutal.  Orphanage living increases their chances of contracting secondary infections which can prove life threatening without proper medical care. The limited resources many orphanages face mean their ability to meet the needs of HIV+ children is handicapped. Project HOPEFUL has seen time and again that children who were on the brink of death in an orphanage thrive with the love and care only a family can provide.

This week especially my heart and prayers are turned towards Ethiopia.  I am praying for my husband, but I am also praying for the Ethiopian adoption process and for HIV orphans still there in need of families.

Project HOPEFUL – Truth Pandemic

30 Nov

Project HOPEFUL and the Twietmeyer family are amazing!  They are having an incredible week.  Project HOPEFUL is doing so much to promote HIV adoption and end the social stigma associated with HIV.

The Twietmeyer’s are featured in the December 6th issue of People Magazine, which is in stores now.  People magazine dedicated 5 pages to tell their amazing story.  I was so excited to read it and loved the article.  The sweetest part for me was when their daughter with HIV was quoted as saying, “I tell people not to be afraid, they won’t get HIV by hugging me.  Children are dying because people aren’t helping.  They need families like mine.”

If that was not exciting enough, Project HOPEFUL has just reworked their website and launched new programs.  If you have not visited their website recently, please check it out.

They have a World AIDS Day campaign to fight against the stigma of HIV.  From PH website, “The Truth Pandemic Campaign was created to help combat social stigma through ongoing educational initiatives.”  Read about it and watch their 3 min. video and then pass it on to 5 friends so they can learn the facts too.  What better day to educate than tomorrow on World AIDS Day!   Lance and I wrote a small post that was posted on Project HOPEFUL’s blog today.  It was about our own disclosure dilemma.    Please spread the truth! 

Lastly, Carolyn Twietmeyer and her family will be featured tomorrow night on the CBS Evening News in honor of World AIDS Day.   We should all tune in to watch!

Turning 3 and Home Therapy

13 Nov

Our sweet little one has turned three.    At age three, children in our state’s early intervention program transition from at home therapies to school programs.  When we started therapy many months ago, I knew by three we would not be ready to  not put our daughter in a school program, and so I asked the therapists  to please train me to be prepared to take over therapy.   They were happy to educate me.  Their program is designed to train the parents and yet they said most parents just want them to come in and do therapy with their child.

We are not chosing the school system (for now) for several reasons.  For one thing we are a homeschooling family, and I think dropping one child off at our local school would be difficult and confusing for our other children.  Secondly, our daughter continues to work through some sensory issues and sometimes experiences  anxiety away from home and her routine.  Thirdly, I really believe parents can make the biggest impact by integrating the therapy techniques into everyday life.   Fourthly, we have issues with disclosing about her HIV to our local school system.  I know we would not have to disclose, but still struggle with when to tell.

So, I bought two books to help me as I continue to help our daughter improve with “at home” therapy.  One book is It Takes Two to Talk, A Practical Guide for Parents of Children with Language Delays by Jan Pepper and Elaine Weitzman.  This book was recommended by my speak pathologist, and I have really like it.   But it was very expensive.  It sells on Amazon but I bought it a little cheaper off of Ebay. 

The other book I bought was The Out-of-Sync Child Has Fun, Activities for Kids with Sensory Processing Disorder by Carol Stock Kranowitz, M.A.  I check out this book first from the library along with The Out-of-Sync Child and Sensational Kids.    These other sensory books were very detailed about sensory issues and were just too technical for me.  However, I thought the Out-of-Sync Child Has Fun, was full of great activities and helpful basic summaries of various sensory problems.  My other children have enjoyed the activities too.

So while I was sad to say good-bye to our nice therapists, I am looking forward to continuing on our own.  I feel prepared and will reassess whether this is the best thing for her in 6 months.   All our therapists knew about our daughter’s HIV.  I chose to disclose to them.  It was a definite first for all three of them.  At our first meeting, I shared with them basic information about HIV (I joked and said in case you are stuck in the 80’s about HIV like I was before educating myself).  They all listened, had a few questions, but they were all so sweet and kind to our daughter.    I hope that all three therapist walk away from their time with our daughter being a little more educated about HIV.

Adoption Nutrition

6 Oct
This is a great website dedicated to helping parents with nutrition/food issues.

 

Talking With Family

4 Oct

It has been a little over a year since we decided to pursue the adoption of our HIV daughter.  We researched everything and had pretty much decided to adopt our daughter.  The last hurdle we had to face was telling our family.  I remember how scared we felt about telling them.  We were really getting attached to the little face we kept looking at, but we felt like we would not be able to move forward without the support of our family.

Every family is so different but this is how we decided to have “the talk” with our family.  We had our “talks” on the phone because everyone lives about an hour or more away.  We decided it would be easier for us to talk with everyone on the phone instead of driving all over the place.  I did not want anyone to say things that they would later regret.   So I asked family members to please listen and  not to say anything until I was finished talking.  So we told them about what we were considering, a HIV adoption.  We talked through all the concerns we knew they would have and told them about all that we have learned about HIV.

We were so blessed to have the support of our family to move forward with our adoption.  I think some were surprised, but everyone supported us especially when we share our precious pictures.  I think my favorite reaction was from one of my sisters who said she knew how long it took for us to buy a new couch so she knew we came to this decision with much prayer and consideration and we could expect nothing but support from her.

A year later everyone loves our daughter without reservations.  I am sure all would say she belongs in our family.

Privacy vs. Secrecy

14 Aug

For now we have chosen to be private about our daughter’s HIV.  We feel like if we only tell close family and medical personnel that in the future she has the choice about whether she wants to be more open about her HIV.  But if we are really open about it now we will take the privacy option away from her.

But on the other side of things…if we don’t share more with others… our family does seem like it has a secret.  If we make our daughter hide this, it will seem like HIV is something shameful.  I of course don’t want our daughter to think that.  I want her to learn to accept her HIV.

Privacy will also affect our other children.  It will give them a burden or something that they have to hide about their sister.  At times our 6-year-old already asks questions about all of the doctor’s visit and lab work.  We don’t feel like she is ready to understand about her sister’s HIV.  We think our daughter would worry about her younger sister.  We don’t plan to lie to our other children about her condition, but for now we say things like the doctor are just doing what they think she need to be strong and healthy.

Sometimes I think…
If we are private are we protecting our family or harming  our family???

Disclosure is for me the hardest part about HIV.  For now, we feel like we are supposed to be private, but there are days I wish people knew so that we did not have this “thing” we keep private.  I wish I could help break down some of the misunderstanding about HIV and help educate people.  But reality is that we live in an area that is very ignorant about HIV.  So there are reasons to remain fairly private.  However, we feel like in the future more people in our circle of friends and family will have to know for our daughter and other children’s sake.  But for now our little one is 2 and it doesn’t seems like everyone needs to know.

I think the worst thing about privacy is fearing the unknowns if ever it got around in our small community or church.  What would happen?  How would people respond?  I want to believe that everyone would be fine with it, but I am sure that would not be the case with everyone. 

I hope to blog more about disclosure in the coming weeks. 
I think I have some more thinking to do.  

On a side note…Please pray for one of our bloggers, Jen.  She is in Ethiopia and is having to stay much longer than she had anticipated.  I know she would appreciate prayer that her paperwork gets worked out and that she can bring her son home soon.  She has to be so ready to get home to her husband and other children.  Please join me in praying for her peace and strength for the remainder of her journey.

HIV and Her Brain

8 Aug

I am still  trying to blog about all we have experienced and learned about HIV in the past 6 months.  Today, I will share some about how our daughter’s brain has been affected by HIV.   We originally assumed that her delays were related to her orphanage life, but both  HIV and orphanage life are probably to blame.

This spring we had to have a MRI scan done on our daughter’s back because doctors thought she might have spina bifida or a spinal tether.  (She did not have either, Praise God!)  Since she was already needing this other scan our PID doctor recommended that we also have a MRI Brain scan done as well since she has so many delays.

What our daughter’s brain scan showed was “white matter changes.”  This is where the HIV virus has affected her brain probably prior to medication at the age of one.  Our doctor told us that “white matter changes” are common in HIV children, but when this occurs there will be some kind of learning difficulties.

We asked,  “Will our daughter have a learning disability or will she have  more profound mental challenges?  Our doctor said that both are equally possible.  She wants to do further cognitive testing in the future when our daughter has acquired more language skills. 

So will our daughter just have problems with higher level learning ?  or critical thinking?   
Or will her learning problems be more drastic like will she be able to learn to read?  or write? 

We don’t  know all the answers.  Our doctor said time will tell.  But she has some learning challenges due to this virus, and living her first two years in an orphanage did not help her. 

And yet delays and all…our sweet little daughter is perfect.  She is fearfully and wonderfully made! (Psalm 139:14)  She is not worried in the least that she is delayed or that she has “white matter changes”.  All she knows is that she now has a momma and dada who love her and are here to help her.

We knew our daughter was delayed at her referral.  We thought sure she would be behind for a while, but she would catch up.  Now we know her learning difficulties will in some form be life long.  And we are ok with that.  God is in control, and we choose to trust him.  He knew this little blessing was perfect for our family.  He knew what knowledge we could handle in order to move forward in faith and adoption her.   And God knew what knowledge we needed to learn along the way.  God is faithful to give us the grace we need each day to move forward in faith and total  joy.

The Aids Beacon

30 Jul

I found a “new to me” website, The Aids Beacon, independent up-to-date news and information for AIDS patients and their families.  I thought this post on HIV adoption was very thorough and helpful for anyone considering a HIV adoption.  It also listed some grant programs that I was not familiar with.  It’s an interesting website with lots of medical news. You should also check out their resources and links pages.

Life Before Meds and Us

27 Jul

Since coming home with our  precious child, I have often thought of a few questions.  What if there were no HIV meds?  What if Ethiopia did not get aid or help with HIV medications?  What if our daughter was not given HIV drugs starting at age one?  Would she have been alive at age two for us to adopt?

In May, Jen posted about HIV stages.  When I read about the stages, I thought…I wonder what our daughter’s stage was before she started on medications.  Well, I recently found a document from the WWO-AFO Worldwide Orphan Foundation  -Ethiopia that notated about her HIV stage.  Dr. Sophia Mengistu, the clinic’s doctor, noted that before starting medication our daughter was  diagnosed with the  HIV virus, a severe immunosuppression(CD4 percentage 9),WHO Pediatric Stage 3 with moderate malnutrition (under wt and stunted with BMI<3). 

We knew our daughter could not have been doing well before medication.  Her little body still shows signs of being affected by the HIV virus prior to medication. 
So what was Stage 3 life like for her???

We were given a painful glimpse into her past through two photographs.  An AWAA family traveled in Dec. 2008 and took pictures of children at the Kidcare Orphanage (They now don’t allow this.)  Anyway, I looked through this family’s online photo album and saw two pictures of our daughter just after she had turned one (Dec 08 was the same month she started her HIV meds).  She was sleeping in a crib and looked horrible.  Her face is sunken in, and she was tiny and sickly looking.  To be honest, she looks dead in the pictures.  I wept when I saw her photo.  She was so little, so young, so sick, and so alone.  I wept for our daughter painful past but also wept for HIV orphans still waiting for a home. 

We saw what Pediatric Stage 3 looked like for our daughter.  Life before medication didn’t look like any life at all.  From the looks of her one year old photo, she would not have made it to her second birthday and her adoption if it weren’t for HIV medications.  I praise God for the Worldwide Orphan Foundation and other organizations that help Ethiopia care for its HIV population.  I praise God for getting our daughter care so that she could live and be adopted into our home.

You have probably heard of the Lazarus Effect , where there is a huge difference once a person starts on HIV medication.  Well, we have seen it first hand.   From her Stage 3 photo to now is amazing.   Once lifeless in a crib to our home where she loves to read books, feed her dolls, play with balls, be tickled, dance to music,  play with  jewelry, and especially loves giving kisses and hugs to her family. 
What a difference medicine can make! 
What a difference a home can make!
What a blessing!