How do most kids get in a pool? They jump… full force, no holding back. They don’t know what the water temperature is, and they don’t care. They are so excited to be at the pool, they anticipate all the fun they are about to have, and it doesn’t bother them if the water is a little chilly. When I go to the pool with my kids, they always tell me, “Just jump in, Mommy!” “Don’t go so slow!”
Y’all, I do not like cold water. I’m over there easing in, one step at a time, holding my breath, keeping my arms at shoulder height, on my tiptoes trying to keep as much of my body out of the water as possible until I can get used to it. It’s a little funny-looking. This is how I get in a pool. I try my best not to live my life like that, especially when it comes to my faith.
Our family first entered the wondrous world of adoption in January of 2013. We have three biological kids who were nine, seven, and five at the time we began our adoption paperwork. We felt called to adoption for sure. But, of course, we can be called into something by God, our longing to be close to Him and what His desires for our lives, yet at the same time we may not really know what the heck we are getting into. That’s why they call it a ‘leap of faith’, not a tiptoe. God doesn’t want us to test the waters He has brought us to. He wants us to trust in Him… even if the water may be over our heads.
Our first adoption went very smoothly – from our quick match only three weeks after submitting an application to the easy transition and bonding experience that our toddler had into our family. It was a beautiful journey and one that was free of much of the grieving, trauma, and heartache that can be found in adoptions. I’m not sure why. Lucky?… I don’t really believe in luck. We brought Sam home in October of 2013.
While we were waiting to bring Sam home, I found much relief and support in private Facebook groups I had joined with others (mainly impatiently waiting mommas) who were going through the same paper chase and waiting on the same government approvals. We rejoiced with good news of Letters of Approval from China or fingerprint appointments with USCIS. And we corralled around each other when disappointing news came or the silence of waiting was overwhelming. We followed each other’s blog posts, and it was always exciting when someone in the group, who was a few steps ahead of you, got that ever-so-sweet TA (Travel Approval), and they were on their way to go adopt their precious child!
During this time, I also read as many blogs as I could. It prepared me for what we might expect, and it was also exciting to see children and families come together. It’s not something easily expressed in words… meeting your child you’ve fallen in love with from an ocean away and instantly becoming parents to this child who likely has no concept of what ‘family’ means.
One mom was adopting their seventh child. She had several biological children at home and other internationally adopted children. She was traveling with her son, and they were adopting a six year old boy with a need called thalassemia. I had never heard of this need before. On her blog she had linked some information about the blood disorder with which her new son was born. I found myself reading about it and thinking that this is a need that we could “handle”. It is a very serious medical condition and adoption is life-saving for children with thalassemia. These children will not live long in China if they are not adopted. Some pass away waiting for a family or waiting for their paperwork to be completed.
I learned that the center near us is one of the top places in the US for treatment of thalassemia. Wow, that’s convenient. I learned that if you are fortunate to have good insurance, thalassemia is a very “manageable” need. Hmmm, we have good insurance. What also struck me as ironic and tragic is that the one thing which children with thalassemia need in order to live, new blood, is the thing that will eventually cause their death if they are not given proper care.
I read how people who get chronic blood transfusions (usually every 3-4 weeks for children with thalassemia) also build up a lot of iron along with that new blood. Iron is something we all have in our blood and something our body needs. Iron is used by our bodies to keep our hemoglobin levels up therefore avoiding anemia. Sometimes we may not get enough iron so we take vitamins or eat more iron rich foods.
But for people with thalassemia, iron is deadly because they get so much excess iron from the blood transfusions (because iron is in everyone’s blood and people who donate blood are not anemic). The excess iron from all of this new blood is absorbed into the body and it finds a place to land, which is in the organs. The liver is usually the first victim as well as the pituitary gland then comes the heart. Iron can damage the organs and is what usually leads to an early death if not treated.
Coincidentally, my husband has a genetic condition, hemochromatosis, that causes his body to absorb too much iron from the foods he eats and therefore, he has dealt with iron overload in the past. Thankfully, his condition is easily manageable, and he just has to give blood on a regular basis to keep his iron levels down. We are aware of the damage iron overload can cause as we researched it when my husband was diagnosed. I found it interesting that the treatment for hemochromatosis is giving blood to lessen the iron content and the treatment for thalassemia is getting blood, yet that causes iron overload.
I learned that thalassemia is a condition for which there is no cure, and it is lifelong. Strangely, I felt this nudge in my heart that not only could we adopt a child with thalassemia, but we should… you know, one day. Honestly, I could already tell that adoption had changed me, and I would never be the same. Even though we were several months away from bringing home our son, I had in the back of my mind that we would be back to China one day, God-willing.
The summer of 2013 was a long one. We were logged into China’s system, had been matched with our son since February, and were just waiting for the official Letter of Approval (LOA) from China that would start the ball rolling toward being able to get travel approval.
So as I sat at my computer one morning and read the blog of a mom who had recently returned home from China with their new daughter, I was taken back at my reaction to a particular video she posted. It was a video her husband took at her daughter’s orphanage of two darling four year old boys who were living there. The orphanage told them these boys were still waiting to be chosen by families. Why did I click on that video? (My husband may have been wondering the same thing.) I don’t know… but it changed our lives forever.
The little boy in the yellow shirt was much more shy and unsure of himself than his friend. He stood perfectly still the entire time as his more animated friend played around him. There was a moment in the video where the lady who was getting them to talk said something to make him loosen up and smile. That little smile melted my heart. Then he stood and looked into the camera, not entirely comfortable with what he was doing. At the end of his little poem, he looked at camera with the most precious expression of innocence and longing (it’s like they said to him, “Now give your biggest puppy-dog eyes.” lol)
I couldn’t get this boy off my mind, and yet I felt guilty and strange for thinking about him when I was also thinking about our Sam every day. I never mentioned anything to anyone and I assumed that with this precious video, he would find a family soon. Coincidentally, I also learned from this mom that his special need was… thalassemia. Okay, really? I felt very drawn to him, but we were in the middle of Sam’s adoption. Not even I wanted to venture into adopting two at once (which is allowed and has been done.) So we waited out the summer and finally got our TA and traveled in October to bring home our Sam. It was a wonderful time in our family. We felt so blessed.
Things were going very well at home, and Sam fit into our family so easily. One day in December, about two months after we arrived home, the mom who took the video of the boys posted in a private Facebook group… and there he was. He was still waiting. The other boy had found a family, who had seen the video and felt that he was to be their son. I felt too strongly about this little boy not to bring it up to my husband, who was, how shall I say, completely shocked. This was definitely not on his radar… at all.
But my husband has a heart for adoption, even before I did. And although this leap seemed much more scary than the last because 1) we had just gotten home from China 2) we had just spent money on the last adoption and 3) this boy was about to turn 5 years old, which is older than I ever thought I’d be comfortable adopting. Plus the fact that his need was different than Sam’s repaired heart condition in that it would require more monitoring, more treatment, and might come with complications that we couldn’t know about.
After a couple of months of discussion and prayer and research about the need, we felt ready, willing, and excited to send our Letter of Intent to adopt this sweet boy. That was in February of 2014. We learned that his file had been prepared since he was two years old. He had been waiting about three years. He lived in a large orphanage in Hunan, and he was not getting blood transfusions as often as he should. Because of the blood shortage in China and the detrimental effects of lack of care in kids with his type of thalassemia (Beta Thal Major, or transfusion-dependent thalassemia), his adoption was expedited and we traveled in June of 2014 to bring him home.
Once again, our trip went very smoothly, and he did wonderfully with the transition into our family. But I will say, while I thought we were getting a quiet, reserved, shy, and maybe low-energy boy, I was wrong about that, lol. Joshua is energetic, kind, talkative, joyful, resilient, and brave. He just needed a family to let that come out.
He latched on to us and never looked back. He gets along with all of his siblings, and he and Sam are really close and play so well together. He has many friends at school, and he just simply loves life!
As far as his thalassemia, he amazes us with his bravery and willingness to do whatever needs to be done. His first transfusion in the U.S. went very smoothly, and I joked with the nurse that this is probably like a spa retreat for him compared to getting transfused in China where he was likely made to stay in a hospital bed for the whole day. No numbing cream or heat pads to make the IV stick go easier in China.
Every four weeks we go down to our wonderful children’s hospital to get new blood. He looks forward to it. He loves to go. For one, he gets to spend the day with his awesome mommy…. but mainly he likes that he doesn’t have to share the iPad with his siblings. Yeah, I know where I stand.
We have amazing child life specialists who sit by him, with their very cool iPads, while he gets his IV started. He never squirms. He never complains. Even on the day we had five sticks with no success in accessing a vein for the IV, and we had to come back a couple of days later.
Since then, we have learned that he really has to drink a good amount of water the day before, and we’ve not had that issue since. Some kids have ports which also make accessing the vein for blood draws and transfusions easier. We don’t feel he needs a port at this time since they are still able to get the IV in one or maybe two sticks. There are pluses and minuses to a port, and that’s just a personal decision each patient and family has to make. If it was what was best for him, we would do it in a heartbeat.
The other aspect of care for people with transfusion-dependent thalassemia is getting all of that pesky iron out of their bodies. When we brought Joshua home at the age of five and a half, he already had severe iron overload in his liver (measured by a fancy-dancy MRI.) People with thalassemia must use chelators which remove the excess iron from their bodies. It’s either peed out or pooped out (sorry, but it’s the truth.) Just as long as it gets out. Some people can take a pill or tablet as a chelator, but Joshua’s body did not react well to that drug, so he uses a different one, which works very well.
The medication Joshua takes must be administered via a subcutaneous infusion into his body, very slowly over at least 10 hours. When we explain to people that we have to poke him each night with a little needle, and then pull it out and a small catheter stays in his body, in the top layer of skin, while he sleeps, they think it sounds like a lot. And they feel bad for him that he has to sleep like that and has to be poked every night. I can see where they are coming from…. it sounds a little involved, not too fun. But to us and him, that stuff is liquid gold.
And to his credit, once we explained to him how this medication would help him grow big and strong, he never questioned it. He doesn’t complain, he doesn’t get freaked out, he just does what needs to be done. When he is ready, he will put the medication in himself each day. He will have to learn to be responsible for his care, and we don’t want him to see this as an optional thing, it’s a very necessary thing.
In a year’s time, the iron content in his liver dropped significantly! Not in normal range yet, but we are well on our way. That’s the good thing about that harmful iron — it can be removed, even in kids with very high concentrations.
It’s something that he will always have to do, but it keeps him healthy, along with regular blood transfusions, and it’s one of those things that becomes routine. It’s less than five minutes out of our day. It’s so not a big deal to us. He will also need comprehensive treatment and care to monitor any complication that can come up (not growing like he should, rises and falls in hemoglobin levels, chelation monitoring, etc.) for the rest of his life. Again, I’m thankful for all of those doctor’s appointments and thankful that he has a bright future ahead of him and who know’s how God will use him in his life.
If you concentrate on on the reasons why you shouldn’t jump into the pool, you won’t jump. The mind has a powerful impact on our lives. But if we let our minds connect to our souls which are listening for God, the possibilities are beyond our understanding.
And this brings me to what I’ve wanted to say all along… his thalassemia is not something for us to “handle.” It’s not something that defines him as a person. He is not his special need. A friend of mine had a beautiful daughter named Katie who tragically passed away from an accident unrelated to her thalassemia. My friend told me that her Katie used to say, “Thalassemia is a big part of my body, but a small part of my life.”
Joshua is not defined by his thalassemia just like none of us are defined by our medical, physical or other needs. It’s how he was born, and it happens to require life-long care and monitoring. He is a beautiful soul who we get to call our son.
We are thankful to live in this country with such great medical care. There is even research being conducted to possibly find a way for patients with thalassemia to require less transfusions or even become non-transfusion dependent. That may be a long way off, and I’m not holding my breath. In the meantime Joshua and so many other children and adults are living with thalassemia, not suffering from it.
We have been so blessed by this child, as with all of our children. I’m glad we didn’t let a scary sounding diagnosis deter our hearts. Our love for him goes much deeper than blood.