special need highlight: adopting a child with thalassemia

In August 2011, my daughters and I returned to China as part of a mission team working to help orphanages assist their children with special needs. It is no coincidence that my background as a pediatric Occupational Therapist would be needed in the place so close to my heart. I partnered with the incredible organization Grace and Hope for Children, just as I had done almost every year since 2005, and was close to adopting Mia who was living in a different orphanage within the region with a diagnosis of beta thalassemia major. When we arrived at one particular orphanage, children were everywhere. It was a much different experience than 2008, when I was only shown a few of the kids living there. This time, we were to see every single child. Every single life. My heart broke for all of the children, orphans, who needed to be wanted, cherished, and loved.

The orphanage already knew I was in process for the adoption Mia and had some questions. They were very curious as to why I was adopting Mia, and what the medical care would be for children with thalassemia in the US. As I explained how we live in an area where one of the centers of excellence for thalassemia is, they brought out a baby. He was pale, yet playful. Lianna held him and he looked at me, calmly and cautiously. I was told he had thalassemia, and they never had a child with thalassemia survive. Ever. I tried to encourage them. I told them that there are families who are open to adopting children with thalassemia. That this sweet baby had a chance. Several months later, I was told that this sweet baby had not survived. He never got his chance.

In October 2011, as I was adopting Mia, her orphanage begged me to help find a family for another child with thalassemia who had been on the waiting child lists for adoption for several months already. He was getting sicker and the orphanage was very worried. They already had several children with thalassemia adopted from the orphanage, and were hopeful someone would adopt him too. Nobody had come forward for the boy with a sweet smile who was at the top of his class. He had many friends. He was adored by his foster family. The orphanage pleaded for a chance for him. He never got his chance, and is now smiling that brilliant smile in heaven.

A few months later, I received word from that orphanage we visited in August 2011. They had two more baby girls with thalassemia. They wanted these babies to have that chance. The chance that the pale baby boy never had. They asked me to help, so that they could live. They asked me to find each of them a family, and they would begin the paperwork needed for adoption. The photos were heartbreaking. One of these children was so fragile. So sick. The other had such a sadness in her eyes. These babies needed someone. Someone to come forward and give them a chance. Someone to say yes. I thought back to the baby I met whose eyes seemed to beg me to give him a chance. And how he never got that chance. I started advocating for these two Guangxi girls, and a year later one of these precious baby girls came home to me. She was to be my Hannah Joy. Her orphanage sister came home a few months later to a very special family. The orphanage finally had two survivors of beta thalassemia. First.Time.EVER.

When the orphanage saw these two girls survive, and then thrive, they had hope. Despite the fact that Guangxi typically suffers blood shortage, they committed to trying to transfuse children as much as possible. Three more children entered the orphanage with thalassemia, and they quickly prepared paperwork. And yet, I learned last week that one of them, a precious baby boy, would not survive. Another chance lost.

The thought of my Hannah Joy being one of two who lived from her orphanage, one of the survivors, is a thought that haunts me sometimes. She brings insurmountable joy. A joy that never would have been experienced if she did not survive. If she had been one who did not have a chance, it would have been a void in my life and a void in the world. She is a gift, and it is a privilege to be her mother. Her infectious laugh, her brightness, her sweetness, her inner beauty is gift to all who experience her. And yet, it’s a fact I struggle with this week learning that one more life was lost to thalassemia. The world is now void of these other children who did not have a chance. We will never again have the opportunity to experience the love they could have given to us. The hope they could have shown us. And the courage they could have displayed to us.

I am determined to not let their short lives be in vain. Children with thalassemia intermedia and thalassemia major are just like any other children. They develop, learn, are playful, and add so much to a family. I know this first hand. The difference between kids like my Mia and Hannah Joy and other kids, is that they are anemic, and their anemia is not fixable with iron. They need donated blood for transfusions and then chelators to remove the consequences of these transfusions. The transfusions are given under the care of a hematologist, at a hospital, every 21 to 28 days. It is likely Mia will need transfusions every 14 days as she reaches adolescence or young adulthood. These transfusions continue for life, or until the current research enables better treatments or a cure.

People will ask me how I do it. How do I parent two children needing such care? I just do it. Just like any other parent would. I take care of them, and we live our life with school, piano lessons, Sunday school, and dance class. It really is no different than learning a biological child or family member needs medical care. Biological children develop chronic medical conditions all the time. Unfortunately, no child is immune to diseases such as diabetes, learning disabilities, cancer, lupus, syndromes, asthma, epilepsy, cystic fibrosis, cardiac conditions, or thalassemia. And yet, we learn to live with these things in our lives, as a small part of what we do in taking care of our children. As parents, we learn to adjust to whatever medical or developmental issue befalls our children. And we do whatever it takes to help them live as normal a life as possible. The issues or conditions never steal the joy our children bring and what they add to our families or give to the world. The same is true for my sweet girls with thalassemia. The world is a better place because they are in it. And I believe that the world is awaiting the gift of the presence of the many other children with thalassemia who continue to wait to be chosen. Take the chance. Choose the gift of a child. A child who just happens to have thalassemia. It’s a chance which will never be regretted.

~Guest post by Cindy