Adopting a child with Beta Thalassemia (part 1)

14 Apr

I feel so led to write  this series of posts.

If you are praying about adopting a child with thalassemia I would encourage you to do so!

I would say, “yes!  move forward!  Watch God provide for you and these very special children!”

Bring this child into your home, your life.

Watch God use them to bless your community.

Introduce them to the God who made them and loves them!

We’ve made the choice to be very open about the special needs that our daughters have.  I know some parents choose not to  share, or disclose this information, leaving it private and up to the child to share when he or she is older and can decide for him or her self.  I remember wondering if that would be how we would handle things.  But it’s not how we feel God leading us, so we have been very open about things and yet respect others who aren’t.

All three of our adopted daughters have been diagnosed with Thalassemia.  Thalassemia is the name of a group of genetic blood disorders.  There are several different forms of thalassemia, or types that affect the body.  I’m sharing today about what it’s like to adopt a child with the most severe form of thalassemia, known as beta thalassemia or Cooley’s Anemia.

If you would like more information on the medical side of things, go to http://www.cooleysanemia.org or call them toll free at 1-800-522-7222.

Our daughter’s Lainee and Zinnia have Cooley’s Anemia.  In 2010 we began praying more seriously about adopting again.  We began to feel that yes we would adopt again, God was confirming it we just couldn’t picture what country, what sex, what age?  As we prayed for God to narrow things down for us, to direct us I spotted our little Lainee Grace on a website called http://www.rainbowkids.org.  I clicked on her little face and was redirected to her placing agency that had a video of her and a little write up on her personality.  I saw that she had thalassemia.  Rainbow kids had a small video interview of a mom and her adopted daughter with thalassemia.  It seemed like no big deal.

With in days we committed to adopting Lainee and could not get another little photo out of our minds.  That was our Zinnia.  She also had thalassemia and was the same again, at the same orphanage.  We prayed about adopting her too.  It was so scary to call and ask the agency about adopting her as well.  We were told no, that the govt in china would not allow it.  well, you know the out come.  God wanted Zinnia and Lainee to be our forever daughters, forever sisters.

Over the months God so clearly confirmed that we were to move in obedience to adopt these girls.

I had to get a physician to sign off on a paper for the agency telling them that he had talked to me about thalassemia.  He was a family physician and I left his office confused and with a pit in my stomach, a tear in my eye.  He said,, “I just don’t know why you would spend all this money and time etc. to bring these girls home to die.  This is a big deal, Laura.”

We had committed to adopting 2 girls with thalassemia and we literally knew NOTHING about it (neither did the family practice doctor) ;)

Trusting God we met with someone from the hemotology team at our local hospital 8 weeks before traveling to China.  I think they did not understand that we weren’t asking them if they thought we should adopt them, we were adopting them, and asking about treatment for when the girls came home.  The doctor said things like, “I would think long and hard on how this will impact your family etc.”  Ugh.  It felt so lonely and crazy and scary.

When we got the girls I knew I would get some answers at the orphanage.  I was imagining sitting down with the director or their doctor and getting the low down on their treatment.

The day of the orphanage visit came and I asked the office staff, “when were the girls last transfused?”  NO one knew, no one in the entire building knew!  “how often are they transfused?”  again no one knew!  “Can we please see their medical records?”  The answer was NO, the key was lost that day. really?

We had no idea what to expect when we first took the girls to our local hospital  for testing.  Were they getting clean blood in China?  could they have hepatitis or HIV?  we were prepared mentally for the whatever came with them.  They had NOTHING, no antibodies, no diseases.

However, I was not prepared for several things that I will share with you

tomorrow.

But for now I leave you with some precious photos of the waiting thalassemia kids that our family is praying for~

This beautiful girl is aging out of the SWI in November.  Doors open, care ended.  She has b. thalassemia and is from the same province as Lainee and Zinnia.  Here she is with her best friend, Zeke who was just adopted a few weeks ago.  He has asked his new family to spread the word that she needs a family.  She needs blood, love and Jesus. http://www.onceuponasunbeam.com is Zeke’s mom’s blog.

Anyone out there?  Oh my heart.  If anyone wants more information please contact me ljones500@yahoo.com

Check out this cutie.  He is 4, b. thalassemia and needs a family, blood, Jesus.

this little guy is 9, b. thalassemia

what a smile!

Here’s the bottom line.  Yes, these children need families, blood, chelation, JESUS.

But, KNOW this:

there is a family out there, that needs them.

Adoption is  not  all about what you are doing for the children, and you are doing ALOT, but it’s about what God will do in your family, through the children.  It’s powerful.

Days are rough but I can tell you from the bottom of my heart.  I would do this all again.

I am so glad we didn’t miss this.

info. on any of the children~ljones500@yahoo.com

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4 Responses to “Adopting a child with Beta Thalassemia (part 1)”

  1. jean Mulvahill April 14, 2012 at 11:23 pm #

    so glad you are doing this series! These children need to come home and have a chance at life.
    It is scary but once we gave it back to Jesus… we’re not scared anymore…

    We’re thankful!
    Abby’s situation is a little different but similar. Our job is to love the children… God will take care of the rest!!

    Praise HIM!

  2. Terry vandervelde April 15, 2012 at 5:44 am #

    Thanks for sharing all of this, Laura. Are looking forward to Part 2. What most excites me is knowing that besides the wonderful fact that Mimi, Lainee and Zinnia are having their daily physical needs met in such a wonderful way, they are continually exposed to their eternal need for a Savior. Having a wonderful family, food, clothing, school, friends, transfusions of good blood, all the love that comes their way, cannot be compareed to what was left behind. Seeing their growth in one year amazes me! However all of these “earthly pleasures”, as wonderful and necessary as they are, can never be compared to the fact that they are learning who Jesus is, and one day, as our prayers are answered, each of these precious little girls will recognize their own sinfulness and need for forgiveness, be call a child of God, adopted forever into His Kingdom. That would, most likely NEVER occur in a Chinese orphanage!

  3. Shelley May 1, 2012 at 12:24 am #

    Hi, I found your blog via the post on Zeke’s family’s site via ??? :). Would you be willing to answer a couple questions about thal for me?

    Thanks!
    Shelley

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