My brother with DiGeorge Syndrome showed me what a pure heart looks like

Home Opinions My brother with DiGeorge Syndrome showed me what a pure heart looks like
My brother with DiGeorge Syndrome showed me what a pure heart looks like
A normal brain scan (left) vs. one with DiGeorge syndrome (right) (photo: Wikimedia Commons)

My brother may never have to study for finals. My brother may never worry about his GPA. My brother may never feel the pressure to find a job after college.

That’s because Levi has a congenital heart defect, craniosynostosis, is missing a kidney, and on top of all this, has DiGeorge Syndrome, which includes 183 possible birth defects and learning disabilities. He is 14 and in the fifth grade. When I call home, the first sentence out of his mouth is often: “Addie! Addie! I drank up all my hot chocolate!”

Levi weighs 80 pounds, and my mom attempts to fatten him up with chocolate protein drinks from Sam’s Club. He hated them until one day I added hot cocoa powder and microwaved it.

Now he drinks them quickly and tells me about it over the phone — seeking approval. “Good job, buddy! Keep it up.”

This is not the conversation typical siblings have with their teenage brother, but for my family, this is normal. Levi was critically ill for two years after he was born. We didn’t bring him home until he was four months old; Mott Children’s Hospital in Ann Arbor became home for 6-year-old me.

Seeing God miraculously save Levi’s life was the beginning of my faith as a child. It wasn’t until this past summer that I began to ask how a good God could create something so broken. Levi may never be able to live on his own. He may never get married. He may never graduate high school. He may never learn to drive. I love my brother dearly, but it’s painful to watch him grow up, unable to live a normal life. For the first time, I found myself asking: How could God create something so broken?

I struggled with these questions, especially while at college. As a typical Hillsdalian, I want to make a difference. I want to do something big to impact the world that my own kids will grow up in. Having a brother that may never make a significant impact on society was a difficult reality to face. How could Levi make a difference in the world? I was asking the wrong question. It wasn’t until the beginning of this semester that I realized what is truly valuable about Levi. Levi has a pure heart; one that pleases the Lord.

Levi can’t tie his shoes or button his pants. Levi can’t do algebra or conceptualize parts of speech. He can’t play sports or follow directions very well. He can’t get a job or have deep friendships. He can’t even realize that he’s different than the kids that he plays hide-and-seek with. But his heart is pure.

He doesn’t get caught up in petty arguments with his siblings. He doesn’t sass my parents like other teenagers. He’s always happy and is obsessed with our cat. He walks around the house saying, “Hi! I’m Olaf, and I like warm hugs!” If all he got for Christmas were pencils, he would be the happiest kid alive, thank you constantly for the next two years, and spend hours sharpening them — just for fun. He doesn’t worry about his life; and in this way, he has the purest heart I’ve ever seen.

I realized that my brother’s worth is not wound up in his abilities or inabilities. Instead, his worth is the fact that he is a precious human being that God created. And for that matter, my worth is identical.

It’s so easy to get caught up in what we can do, our GPA, and our accomplishments. We equate our worth with our performance. We look at our resume and feel that our accomplishments check a box on the application for our mansion in heaven. We volunteer for so many hours a week. We are president of this sorority or a leader of that GOAL program. We go to church weekly and maybe even Sunday school. We go to Bible study or participate in other ministries. We somehow create a point system in which God looks down, smiles at all the great things we do for him, and applauds us as we change the world, all for our own glory.

But in reality, God is unconcerned with our performance. He is unimpressed with our GPA. He doesn’t want what we can do for him, he wants what he did for us. All he wants is our hearts — a pure and devoted heart.

Adelaide Holmes is a sophomore studying politics.

Loading