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Final Post…for now

20 Sep

This will be my final post for now on Precious and Positive for two reasons.  The first reason that I simply don’t have the time with caring for our young children, homeschooling, and church activities.  The second reason I think I will stop blogging for now is that I think I am done with sharing details about Noel’s health on a public blog.

Noel is currently doing fine despite all her life challenges.   It is our daily prayer that she continues to make progress even though it is very slow at times.   We love her and can’t imagine our life without her.    The day-to-day struggles do not surround managing her HIV, but have to do more with her continued feeding issues and life with a feeding pump.  However, we are finding out more and more that her feeding issues, global developmental delays, and seizures can all ultimately be blamed on her HIV.

I am currently really struggling with hating her HIV.  I hate it for her because it has made her life so much harder.  It is sad what is normal for this child regarding doctor’s visits, lab work, and diagnostic tests.  I hate that she has to endure so much.  I also hate the stigma that is associated with HIV.  That we feel like we cannot share our struggles with others to hopefully gain support because we believe their responses would not be positive.

HIV adoption can be a simple thing.  You are adopting a child that just needs medicine and visits a PID doctor 3 to 4 times a year.  That was not our story.   It was not that simple for Noel.   We DO NOT regret our adoption for one second.  We love our daughter and can’t imagine not having her and helping her through this life.  But there are risks associated with HIV adoptions.  HIV is real and can affect a little one for life.  But there are always risks for a medically needy child whether you adopt or give birth to a child.  For Lance and I God choose to bless us with a medically fragile and needy child.  If I had known all we would have faced with Noel before our adoption, I would have told you we could not handle all of it.   But God knows us better than we know ourselves and He is daily changing me to be a better mom to Noel and my other two children as He makes me more like Christ.

These are some of the truths that keep me sane on my journey in this life.

My God is sovereign over all things.

He is sovereign over Noel’s HIV and her brain.

My God knows our path…whether we have darker days or brighter days ahead and He can be trusted.

My God loves and cares for Noel more than I could ever.

One day in heaven Noel will get a new body and she will be free of HIV.

My God will supply all our needs.

His mercies will be new every morning.

My God is faithful.

What if our Blessings come through raindrops?

9 Jul

TOMS

9 May

Lance surprised me this Mother’s Day with a pair of TOMS shoes.  I have wanted some TOMS for a long time.  I love the concept behind this company.   My shoes are cute but a little big so I have to mail them back for a smaller size.  

Buy yourself a pair and provide a pair of shoes for a child at TOMS shoes.com

Time to Eliminate Pediatric AIDS is Now

20 Apr

The Time to Eliminate Pediatric AIDS is Now from EGPAF on Vimeo.

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 on Today Show

10 Mar

Please watch this interview with the Twietmeyer’s if you missed it on NBC.  It is really great!

Media.

What would you do?

18 Feb

ABC’s What Would You Do? tackled the question on tonight’s episode…What would you do if you witnessed AIDS discrimination?  I watch most of this, and it was both interesting and sad.   It showed that HIV stigma and ignorance is alive and well.  They based their scenario on this 2009 Kaiser Survey.  Some people spoke up to defend the HIV actor, but most throughout the day did not.

If you missed the show, read or watch more about it on ABC.

And if you need to know more about how HIV is spread, please educate yourself and watch the Truth Pandemic Video.

Perfect Love Drives Out Fear

14 Feb

Great Post- A Must Read!

The Ethiopian Doctor

31 Jan

                                             In my last post I shared about having to take our daughter to the ER for seizures.  It was on 12-1-10, World’s Aids Day.  I thought it was interesting to be at the ER on World Aids Day.   I was given lots of opportunities to talk with doctors and nurses about “our story.”  A few young doctors in their residency asked when did I find out she had HIV…like did I know before I adopted her.  One doctor gave me a high-five when I told him we knew we were adopting a HIV positive child.  (It was a little weird, but neat at the same time.)  All of the nurses and doctors were so kind and sweet to my daughter.  This was a pleasant surprise.

If you remember from this post, I used to drive four hours to Dallas to the ARMS clinic, because of a bad experience with this children’s hospital that is an hour away.  When your child is having seizures you don’t drive to Dallas.  I had no choice but to give this closer hospital a chance.  I later learned that the PID doctors that had refused to help with our embassy paperwork had left or retired.  During our stay I never felt like anyone acted ignorant about HIV.  Everyone was supportive and kind.  (We now feel 100% comfortable with our closer hospital and PID clinic and will no longer drive to Dallas.  We loved working with Dr. Barton at the ARMS clinic, but the drive was getting difficult.)

The most memorable doctor we had during our hospital stay was an Ethiopian doctor.  It was about 3:00 AM when we admitted to our hospital room.  My daughter had just fallen asleep and was finally resting after hours of screaming in the ER.   So this doctor comes in and starts asking questions to help asses this new patient sent to her floor.  I tell her about the seizure and about that our daughter is HIV positive and was adopted from Ethiopia.  Then she said, “I am from Ethiopia.”  She paused and then started speaking softly.  She said she was having a hard time controlling her emotions.  She said that she was so touched that we would adopt a HIV child.  At this point we were both crying.  (I was so exhausted and emotionally drained.  It did not take much to get me crying.)  She kept saying thank you, thank you.  She told me some about caring for HIV/AIDS patients back in Ethiopia.  She told me that she plans to return to Ethiopia once she finishes her residency.  She also shared that she has a foster son back home that has HIV and has lost both of his parents to AIDS.   It was a very touching conversation that I will never forget.

Talking with this amazing Ethiopian woman made me think that we, as Americans, don’t really get the HIV/AIDS crisis that part of the world faces.  I mean HIV/AIDS does not emotionally affect most Americans.  We have a World’s AIDS day for education, but then go back to not thinking about it.  Other countries are faced with the AIDS crisis everyday.  Most Americans will never look into the eyes of a child who has lost both parents to AIDS.  This doctor has.  Most American doctors won’t know or understand HIV/AIDS like this Ethiopian doctor, who has lived to help HIV/AIDS patients and plans to return to Ethiopia to help some more.

Encouraging your HIV adoption

22 Jan

I just want to encourage anyone contemplating on adopting an HIV child. Our daughter has been home nearly a year and just turned 6. We have been fortunate to have a very healthy girl who contracted HIV from her mother during childbirth. We have had NO medical issues with her whatsoever and have her blood tested every three months. Her CD4 count is 620 and her viral load had plummeted to 7500. These numbers go up and down with every appointment. Each HIV specialist has their own idea of when it’s time to get them on medication. Our doctor feels she is extremely healthy, so there is no need to start HIV meds. We have 5 other children- all of whom have been educated about HIV and do not feel threatened by their sister’s condition. Honestly, it makes those who know our beautiful, sweet daughter love her more!