1 year in our family!!!!

Alex has been in our family for a year. It has fone by so quickly. He fits in our family so well. E love him so much and cannot imagine our life without him. Noah's favorite thing about Alex- "he's funny."  Aiden's favorite thing about Alex-"he loves me." Claire's favorite thing about Alex- "he helps me build legos."

I also asked Alex some questions. 

What do you miss most about China?

The food, and my friends. 

I totally agree about the food buddy- I miss that too. Finding authentic chinese food here has been a challenge. 

As for his friends- he has 2 close friends in his foster home. One, a girl he calls his Jie Jie (older sister) lives in the US in Alabama. We (her mother and I) plan to get them together this summer. The other is a 10 year old boy who still waits for a family. He is a nice boy and in school. He really needs a family. Here is a picture:

What do you like most about America?

God, all the trees, and McDonalds

Oh this boy. He still loves McDonalds. The day we met him in China, we let him pick where to go for dinner. He picked McDonalds. We take so much for granted here.  It was obvious that Alex rarely was able to get a happy meal. We all know that when you are young the most important part of that meal is the toy. When you grow up in a place with limited resources and with 30 other children happy meal toys and trips to McDonalds are very rare. So I will admit that we have eaten McDonald's more in the past year than in the previous five combined. 

There are so many more trees and green spaces here when compared to China. Alex loves being outside. He loves to collect rocks and acorns when we hike. It is so fun to watch him experience the wonder of nature. 

When Alex started speaking in English with some confidence one of the first question he asked was why God was not in China. This is something else we Americans take for granted. We have to freedom to worship (or not!) as we please. Those who know me well know that I want everyone to worship as they please. But this post is not about that. Alex believed God was not in China. In the past year I hope Alex has learned about how much God loves him. Watching him learn about God is so interesting to watch since he did not grow up with God. He asks such great questions. Alex said that we need to tell all of China about God. We agree buddy. 

What do you like most about our family?

You are nice, I have brothers, and we have a cat. 

Hmmmm no mention of his sassy little sister! Yes, we try to be nice. We love this boy so much, yet love is such a hard concept to learn when you come from a trauma background. Love and family permanency take time. That's ok- we have time. He is stuck with us forever (including Claire!). Alex has bonded so well with his brothers, and he has bonded with Claire too. 

When we first got home Alex thought it was so weird that we had a cat as a pet. (And no- do not assume that people eat cats in China- Alex has never eaten cat). Only the rich in China have pets at all. When we added Ming to our family- Alex was so excited. He loves Ming. He says he wants to live somewhere that we can have lots of animals and lots of trees and a pond. 

What are your favorite American Holidays?

My birthday, Christmas, and Halloween. All three celebrations were new to him this year. He also does not understand getting random gifts. We will get the kids a little something (new shovels for dogging worms this week), and Alex gets excited and keeps asking is why we got him something. Because love buddy.  

He has grown at least 4 inches and gained over 4 pounds. He has a talent for building things. He is kind, and silly, and smart. We are so glad he is part of our family. 

2 years ago!!

Today is the 2 year anniversary of the day Claire joined our family. I remember so much about that day. Some memories stand out. Waiting in the lobby of our hotel before boarding the bus. There was snow. 

The eerily silent bus ride (the only time our jovial travel group was quiet!). Watching the buildings go by, wondering if my girl would be late. I had a feeling (and heard a rumor) that she arrived all the way from Shanghai the day before. 

The rush of emotions when we walked into the room and I spotted her. The world stopped. There was my baby. I wanted to scoop her up and burst into tears, yet could not do either as I did not want to terrify her. Her Ayi pointed to me and said "Mama!"  Claire repeated her, sounded unsure. I dug out cheerios. The nanny dug out the picture book we had sent and pointed to my picture to show Claire I matched. 

She took the cheerios, and eventually made it into my lap. I could not hold in the emotion. 

Things settled and I had a chance to look around and see the other families welcoming their new kiddos. 

The roads were icy and one family's child did not make it in time to meet us there. They met him later at the hotel. 

I remember signing the temporary gaurdianship papers. 

I even let my dad hold her for a minute. She bonded quickly to her Ye Ye.

We got some pictures with the Ayis. 

It was time to go. We were there for hours, but it went by so quick. Saying goodbye was hard. 

We got on the bus and Claire soon fell asleep. We had this view:

She did not wake up for quite a while. She had a great nap at the hotel. 

How we spent the rest of the time in China (well minus the coat and hats when we got to Guangzhou):

I prefer baby wearing over strollers. I also remember using a squattie potty more that once while wearing Claire! 

Two years ago:

Today:

She has grown so much. I asked her if she was scared when we met. She said "nope! Ayi was with me, then you came."

World Aids Day

It is World Aids Day! Of course I have to post today!! I thought I would share some stats and random thoughts. Stats came from the WHO and UNICEF. 

There are 35 million people living with HIV. In 2013, there were 2.1 million people newly infected. 240,000 were children. Less than 1 in 4 children with HIV had access to ART- the life saving medications. Less than 1 in 4. 

There are 153 million orphans in the world. 17.9 million have been orphaned by HIV/AIDS. 

17,000,000. That is a lot of zeros. That is a lot of children without parents. 

Most live in Sub-Saharan Africa and Southeast Asia. It is estimated that there are 10,0000 in China. 

Want to help?  It can be easy!  Ideas:

Help fight the stigma and fear. Be willing to educate yourself and others. 

Support a family you know that is affected by HIV. Just saying you care about them and that  HIV will not change how you interact with them goes a long way. 

Support charities that help those affected by HIV/AIDS.  My favorite is ELIM kids (they work in China with orphans and families dealing with HIV/AIDS. They educate orphanage staff and have a group foster home). https://www.facebook.com/elimkidschina 

Consider adopting a kiddo who is HIV positive:) 

Share something on social media for World Aids Day #WAD2014

Stigma and Disclosure

Two of the biggest topics in the HIV adoption world are disclosure and stigma. They are very closely related. So let's talk about them. 

Stigma definition:

noun, plural stigmata

 [stig-muh-tuh, stig-mah-tuh, -mat-uh] (Show IPA), stigmas.

1.

a mark of disgrace or infamy; a stain or reproach,as on one's reputation.

(Source www.dictionary.com)

HIV sure does have a blemish in its' reputation. So much fear of how it is spread. Fear of catching it, of it killing. In China it is widely believed that HIV can be spread by shaking hands or hugging. Poeple with HIV are evicted from housing, fired from jobs, and regularly denied medical care. HIV positive orphans are isolated, and often left to die. There are organizations working to change this. They work to educate, to provide foster homes for HIV positive orphans, to help families stay together by helping with jobs, food or housing.  While in China, this was a big concern of mine. There were people who needed to know, our guides, the medical clinic, and all the officials since the special need is on all of the official paperwork. I had no issues. Several friends did run into some issues. Our guide in province was very up front and told us when he picked us up from the airport that he was not scared, and had worked with HIV positive kiddos before. Our guide in Ghuangzhou seemed a bit nervous at first,but quickly warmed up and asked good questions. This was her first time working with HIV. Our agency did a great job educating her ahead of time. She never had an issue with hugging or touching my kiddo. I was actually most concerned about the medical clinic. I know first hand that healthcare workers fear HIV. Would they treat my kid differently? Three days of sputum testing is required so we would see them a lot. I was pleasantly suprised. The nurses and physicians were very professional and it did not seem to blip their radar. 

The stigma for HIV is worse, in my opinion, than it is for other infectious diseases such as hepatitis. Scott never really hesitated to say yes to hepatitis, but was hesitant to say yes to HIV. Hepatitis B is actually so much more contagious than HIV. The viral loads are in the millions, and it lives on surfaces for over 8 hours. Air does not kill it. I see this in healthcare workers too. I work with blood exposures and most everyone is much more frightened of catching HIV than hepatitis B or C. Hepatitis can lead to liver failure, and the meds are so much worse in terms of side effects, and the viral load is almost never undetectable. But HIV has that stigma. The reason many families choose not to disclose is because of the stigma. 

So disclosure. Who do I have to tell that my kiddo has HIV? Short answer is no one. HIV status is protected at the federal level. Which means if Aunt Susie tells her Sunday School class that your Sally has HIV without your permission, then she has committed a crime and can be prosecuted. You do not have to tell the school, the sports coach, the pastor, the dentist, or anyone. Of course it is wise to tell those who may have penetrating blood contact such as the dentist and doctor. We made sure the OR staff knew before the dental surgery because most needlesticks happen in the OR.

There are reasons in favor of disclosure. The biggest for us is that general medical knowledge about kiddos is known. I know which of my friends kiddos have diabetes, heart conditions, Hepatitus C, cleft lip and palate, missing limbs, hearing loss, down's syndrome, hemophilia, and orthopedic conditions. My friends post when their kiddo breaks their arm or gets stitches. So why should HIV be different? Keeping the details of the medical condition private is not hard to do. I do not know the dose of insulin my friend's kiddo with diabetes takes. I do not know the dates of the medical check ups. I have no idea what the details of treatment are. They do not post on facebook recent lab results, or what new medication was given. I do know that if I have a question about arthrogyposis I can ask Brandi or Katie. Questions about heart conditions, I ask Sarah, Christa, or Rene. Cleft questions I ask Dawn, Angela,  or Gwen. You get the idea. Disclosure can happen without invading privacy. 

Another reason to disclose is that normalizing HIV is one of the best ways to fight the stigma. We act like it is no big deal because it is no big deal. We also do not want secrecy and fear to be a part of this. There is no worry they may accidentally tell someone. We have had some great questions from friends and family, and honest questions are always welcome. We do not expect everyone to be a HIV expert. 

We obviously disclose, but we really do not tell everyone. Friends who do not read my blog probably have no idea. We did not tell the school last year. It is not something we bring up all the time. Honestly we don't think about it all the time. 

Disclosure is such a hard thing to decide. I have friends who do disclose, those who don't, and those who fall in the middle. I have friends who have lost family and friends after telling them they were adopting a HIV positive kiddo. I respect the decision of all of my friends, and I think it is an individual family decision. I will and do support the families who do disclose, and those who do not. We all agree that the stigma needs to end, and that there is no reason to fear HIV. 

HIV Q & A

I posted in several places asking what questions were out there about HIV and adopting HIV kiddos. I got some really great questions and I am going to attempt to answer them:). 

1. What about boo- boos and blood? Do your kids know what to do when they bleed? Are there any risks if my kid plays with a kiddo who is HIV positive?

HIV has never been spread through this type of contact. Bleeding boo-boos are not scary. HIV is killed quickly by contact with air. Any spilled body fluid has to get into the bloodstream to infect someone- which is hard to do. Putting a bandaid happens the same way it does at your house. Intact skin is the best defense against any virus.  We teach all of our kids not to touch other people's blood. That is the medical part of me though- it has nothing to do with HIV. I don't want my kids touching anyone's body fluids- that is just gross and unnecessary. They know to come get a grown up if they see blood. There are no risks for children playing together. They can pass on the flu or colds- but not HIV. 

2. If I adopt a HIV positive kiddo- what if she gets sick? Will she end up in the hospital from a cold? Do I need to worry about her immune system?

All kids get sick. It is part of life. Yes- you would watch a bit more closely, but it really depends on what his immune system is up to. A cold does not mean a hosptialization. The medications used to combat the HIV also help normalize the immune system. Most of the time the body will fight it off just like it would for anyone else. Of course there are exceptions, and sometimes HIV kiddos do get sicker. Just like cardiac kiddos, or diabetic kiddos, or any kiddo that deals with a chronic medical condition. There are things you can do to help your kid's immune system. Most important thing is frequent handwashing. In our family we use vitamin C and D as immune boosters (especially in the winter).  We also avoid gatherings when others are sick. That also has more to do with my not wanting the kids to get sick than the HIV. Sick kids are not fun! 

3. How often are doctor visits? How much do the meds cost? How often is lab work?

Doctor visits with the pediatric infectious disease (or PID) doc are every 3-4 months for most kids with HIV. Labs are the same frequency. The medications are usually covered well under insurance, and if not there are medication programs to help reduce the cost if needed. The families I polled pay about 35-80 dollars per month for all the meds. We fall in the middle of that. 

4. What if the meds don't work?  What if the child becomes resistant to the meds? What about medication side effects?

Drug resistance usually occurs when the medications are not given regularly. Missed doses or frequent medication changes can lead to drug resistance. There are now very sophisticated tests that help the PID if this situation arises. There are several types of HIV and some types respond better to different meds. There are 5 categories of HIV meds, and around 25 different meds total. Research is being done to increase the medication options.  If resistance occurs, there are tests for that too. The resistance tests (which are all blood tests) help determine what the next step will be. Thankfully this is rare, and PID's are usually more than willing to collaborate with each other. There is still a great deal of research in HIV.  I talked with several people who have kiddos who are drug-resistant and none of them regret choosing this medical need. So far all have found treatment options- different combinations of medications or even research trials. My advice would be to call your local PID and ask them how they would handle this. The meds can have side effects, and like any med it really is dependent on the individual. We have been through one med change because of side effects. There are many medication options out there and finding the treatment regimen that has the least amount of side effects may take time. Part of the quarterly lab work is monitoring liver function and such to keep an eye out for early indicators of side effects. 

5. What about insurance costs? Can my insurance deny my child coverage? Will my rates go up?

An adopted child is added to an insurance plan just as a newborn would be. The insurance company is required to cover medical care as they normally would. If you are self employed and pay for private insurance, the rates could change at re-enrollment. If this is a concern, call the insurance company and talk with them. There are special programs for HIV kids, such as Ryan White, that help also. This looks different in every state- so you should call the local PID office and ask these questions. I promise those nurses are experts! They can give you the scoop on how the insurance wants the meds prescribed (monthly through mail order for ours), the assistance programs for medical and medications that are available in your state, and which ones are more of a pain to deal with. I am most familiar with China adoption, and HIV is less expensive than several of the other medical needs (like those that require multiple surgeries or therapy).

6.  What is the long term prognosis? Can a HIV positive person marry a HIV negative person and not infect them?

People with HIV have normal life expectancy. Dying from AIDS is pretty rare. A person with HIV can marry, have kids (even the old fashioned way!), without infecting their partner or baby if they are the woman. Magic Johnson and his wife have been married many years, and she is still HIV negative. 

7.  Are there extra or different visa requirements for adopting a HIV positive child internationally? 

I can answer this for China, as that is my experience. I am not sure how other countries handle this. Three days of sputum sampling, a chest X-ray, and a blood test are all completed prior to the US consulate issuing the immigration visa. It does not add travel time to the trip. The cost is minimal. 

8. What about disclosing? How about dealing with stigma?

These are the hardest questions, and I will answer them in another post:) 

Resources:

http://aidsinfo.nih.gov/guidelines/html/2/pediatric-arv-guidelines/0 

http://www.projecthopeful.org 

http://hab.hrsa.gov/abouthab/aboutprogram.html 

http://www.dinglefest.com/2014/02/hiv-faq-how-do-we-keep-other-kids-from.html?m=0

http://www.pkids.org

sympaschō

Romans8:15 So you have not received a spirit that makes you fearful slaves. Instead, you received God’s Spirit when he adopted you as his own children.[h] Now we call him, “Abba, Father.”[i] 16 For his Spirit joins with our spirit to affirm that we are God’s children. 17 And since we are his children, we are his heirs. In fact, together with Christ we are heirs of God’s glory. But if we are to share his glory, we must also share his suffering.

Suffering with Christ. This was one of the things discussed in the sermon at our church this week. Our pastor explained that suffering with Christ means feeling what He feels. Having a passion for what He loves. In the words of Matthew West

"Father, break my heart for what breaks Yours

Give me open hands and open doors
Put Your light in my eyes and let me see
That my own little world is not about me"

The word suffering in this passage, our pastor explained, comes from the Greek word sympaschō. 

Definitions:

1. to suffer or feel pain together

2. to suffer evils (troubles, persecutions) in the like manner with another

   (Source: https://www.blueletterbible.org/lang/lexicon/lexicon.cfm?Strongs=G4841&t=KJV)

   
   

I want to share a secret. I prayed a prayer once for God to reveal His heart to me. Dangerous things are prayers such as these. 

Time went by. I worked different populations, and felt sympathy. I did not feel their pain together with them. Then I met people where I felt their pain. I felt how Christ feels. The heartbreak. The anguish. The beating my hands on the floor and crying out for them with all of my being. The fatherless. 

In a government office in China I met my daughter.  I witnessed the transformation from fatherless to part of a family for several children. I saw it again first hand when I met my son.  There is surely something wrong with the world that I have the privelidge to call another parent's children my own. These children who need families and love. These birth parents who made agonizing decisions. The world is broken. In a perfect world no child would be relinquished because of poverty, gender, medical issues, birth defects or any other reason. 

I do not believe everyone is supposed to adopt. Yet these fatherless. They permeate me. I constantly think of them. I see inside of orphanages in my head. I see children who need medical care and love. I feel the hurt along with them. I triumph when they get medical help, love, and families. I wake up in the morning thinking about the fatherless. I wake up in the middle of the night feeling the loneliness of the fatherless. I pray without ceasing about the fatherless. 

For years I asked why would God allow this? Why would the God of the universe allow a precious innocent child die alone in a room seemingly unwanted. It has taken me a while to understand that the world is at fault, not God. God is not a magician that waves a wand to take away the hurt. That would take away our choices. So God waves His arms and gathers in for a hug. He supports us and helps us through. God opens our eyes to the fatherless (or whatever it may be for you) so we in turn can be His hands and feet and do the work of God. The work of Love. 

I think everyone has a cause or a population that God will let you feel the pain together with. You will know you have found when it keeps you awake. When you constantly feel you need to do more. When you want to scream at the top of your lungs asking why is no one else caring, why is everyone not feeling this suffering. It is life changing, this sympaschō.  

God opened my eyes. He broke my heart for what breaks His. I suffer with the fatherless. 

6 months!!

This boy has been part if our family for 6 months. That is just nuts!! He has opened up and learned so much English. He is good at math and works hard at school. He is funny and kind. He has fit into our family like he always belonged. We love him so much. 

6 months ago today. He said good bye to everything he knew. His foster home. His foster siblings. This boy was so brave to come with this strange looking mama. 

He gained a loud crazy family. He gained grandparents, cousins, aunts, an uncle. He gained a future. We love this brave boy and we are so glad he is ours. 6 months has flown by! He loves ice cream and ultraman. He has a talent for drawing. He is tender-hearted. He is all boy. He can't wait to see snow for the first time. 

It is hard to catch him smiling for the camera ;). 

We love you Alex!!