Adoptive father and writer Michael Richard shares how it feels to watch his daughter, who was born with thalassemia in China, as she grows and thrives.
“GO GRACE. GO!” We screamed and yelled with our hearts in our lungs. No one else knew how difficult this was for her. Sure, her coaches and a few of her cross-country teammates at the Angel’s Camp subsections knew Grace had Beta Thalassemia. But what did that mean? On this particular day more than two years ago, Grace’s hope was to run with her Vacaville Christian teammates. Three plus miles, two hills. A medal was beyond reach.
Major league athletes and people with amazing gifts and talents are special. But what does it mean at age 5, or 12 or even 20 to be a “child or young adult with special needs”? What are their struggles and opportunities? What are their dreams?
In July 2002, we adopted our daughter from China. That fall we began to see she needed some medical care when she became very lethargic and pale. At the time, not many doctors at our medical center knew much about Beta Thalassemia Major so it was a big learning curve for all of us. Grace’s condition means she lives because other special people give blood donations. She is a trooper. Since the age of about 18 months, she has received the blood transfusions she needs to live, every 3-4 weeks like clockwork. So many people — family, friends, donors, doctors and nurses — help her to live an amazing life. And God is in that picture for her saying, “You can do this.”
A while back, I was explaining to a friend that Grace’s condition may be life long, but it is not life limiting. She has an inability to make adult red blood cells. She can make some “baby” hemoglobin, but this is not enough. You and I (or at least those of us without Beta Thalassemia Major) have genes that work more or less the way they are supposed to. Grace’s genes don’t work this way, so she needs blood transfusions.
Think of a picture of an old style hot and cold water faucet. Similarly, genes can turn on and off. As the doctors explained it to me, for you and me, at about 9 months of age the “fetal” hemoglobin gene turns “off” or way down, and the adult hemoglobin gene turns “on.” In the case of children like Grace, she is missing the gene to produce adult red blood cells. This is like turning on the hot water, and all that comes out is the smaller amount of cold water that her body still thankfully produces.
Modern health care, technology and blood transfusions — including the options of bone marrow transplants — mean that today children with Beta Thalassemia can live relatively happy, healthy and normal lives. Beta Thalassemia and other medical conditions do not need to define the children who have them. These conditions are not something to be afraid of, but in my view, to be wisely considered, prayed about and embraced. For the long term.
Having a child, however God arranges it, is special. As a writer, I realize that looking back with 19+ years of hindsight does give me an advantage. And for me and my wife, Chanie, God in His goodness and grace has stretched our faith way beyond what I thought was possible. It is fair to say that when Grace was 1 year old, what I knew about Beta Thalassemia was slightly above ZERO.
In a very real sense, both our biological son Tim (age 27) and Grace (age 20), continue to teach us, as we hopefully teach them. Or to steal a theme from my book, Chosen’s Beautiful Heart: Family often looks nothing like we first imagine or expect! And whether it happens the age-old way, or by adopting a child with special needs, family is a beautiful gift that we can give to ourselves and others.
You might wonder, with Grace’s health condition, what does her normal everyday life look like compared to you and me? It is pretty much the same. Does she go to the doctor a bit more than us? Probably. Does she know what it is like to be stuck by more needles than I can count? Definitely. Does she know her doctors on a first-name basis, who have loved and cared for her for years? Yep!
About every three to four weeks, she first gets a cross and match (to match her blood type), followed by a blood transfusion the following day. Over the years, as someone who has likely had over 200 blood transfusions, she has also learned the necessary steps to avoid “iron overload” to her heart and liver. Left untreated, this would be fatal. Grace has learned the multiple ways of getting out that extra iron each week. She continues to do a phenomenal job with her own care. Perhaps that is why as a sophomore at Cal Baptist University in Riverside, Grace is applying to the radiology program. As a health care professional, she hopes to give back in the same way so many have given to her.
Yet, let me flash back to the cross-country race at Angel’s Camp when Grace was a senior at Vacaville Christian, and more or less running for her life in subsections. Coach Mia had chosen Grace to be one of two team co-captains that year. Dr. Gaborko, a local doctor, stationed himself ahead of the very last hill. As a runner himself, he knew well what Grace’s Thalassemia meant. Grace was a competent runner. She seemed to be starting well. A medal seemed almost impossible. She gave it her ALL. Still, in a three-mile race, the last hill and the final 200 yards were critical. With three-quarters of the race finished, Grace was in closing distance on the spread-out pack that represented the top third of all girls.
As sometimes happens during tense race moments, an amazed parent would see Grace and ask, “So tell me about the Beta Thalassemia? After she gets her normal blood transfusion, is she good to go just like all the other runners?” I was trying to watch the race, but I would answer. “No, it’s not the same,” I told them. “First, it’s mostly someone else’s blood in her body because her body doesn’t produce enough. Her body is making due with someone else’s blood. It is much harder. Still, we made sure she got her transfusion a week ago. Think of it like a car on a long trip. A full tank, you’re good to go. A week out, three-quarters full, you hope to make it on a long trip. Two weeks out, half a tank, maybe half your athletic energy is gone. The only question is when the fuel will run out.”
Yet, NOW Grace approached the last big hill. She was closing on the girl while Dr. Gaborko was screaming at her, “Grace, PASS her on the uphill.” Then he said loudly,” Grace, you MUST pass her on the UPHILL.” Grace kicked it into overdrive, and her number letter disappeared over the top of the hill 10 feet in front of the girl she just passed.
If we cut across the field, I thought, maybe we can see the end from a distance. I MISSED IT.
Grace was smiling. Here is what they told me. The top 20 women of the full 60 competitors get medals. Grace crested the hill first. She quickly gained 15 feet on the other young woman. Yet, as she raced down the hill (as Grace later told me), she was losing ground. She didn’t have much left for the final 200 yards. Grace said, “The girl was bearing down on me; I could hear her footsteps. My teammates were all at the line. They were screaming, ‘Run! GRACE RUN!’ SO I DID! I beat her by five feet.”
By the time I got there, Dr. Gaborko was walking over to Grace. I slipped in my question first. “Did you know you were in 20th place?” I asked. Then Dr. Gaborko, with tears in his eyes, asked, “Grace, do you know how difficult what you just did is?” Grace shook her head. “I just RAN!”
Afterward Grace smiled; and if you look closely, despite the years, you can still see that special smile today.
Grace Richard desires that God remains the strength of her heart. In fall 2022, she will be a junior at Cal Baptist in Riverside, CA where she was recently admitted to the radiology program. She plans to graduate with a B.S. in Radiology in May 2024.
Michael L. Richard is an author, writer and husband who still hopes to see the wishes of his two young adult children (and his readers) come true. His fiction novel, Chosen’s Beautiful Heart, is being pitched to publishers. He loves to write about parenting, adoption, China and the horizons of our dreams and abilities. His email is [email protected].
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I loved this inspirational story about Grace and your family!