(cross-posted from Bound4Life
When you live with a chronically ill child, certain words and phrases become a permanent part of your lexicon. One of my least favorite is “quality of life”, where we attempt to ascertain the value of another human’s existence. We heard that phrase for the first time in 1999, as we fought to stay pregnant with our tiny son. “Even if he’s born alive,” they said, “which is unlikely, he’ll have no quality of life.” The words were spoken kindly, by well-meaning people, but they were like a sledgehammer to my heart. What did it all mean? And what was going to happen to us, to our baby? 4 days later, hours past the “viable” mark, our 24 week baby was born alive. He was 1 lb, 5 oz, and he was very, very sick.
One night during his first week, they told us to go back to our hotel and wait. “We’ll call you if, when it’s time to say goodbye.” His tiny body was wracked with seizures, his brain a mass of blood and cerebrospinal fluid. We sobbed our way back to our room and lay fully clothed on the beds, waiting. We woke up that way the next morning and realized he had passed the test, he had lived through the impossible. Upon arriving near his incubator, a doctor pulled us aside and strongly suggested that we “let him go.” “You have to start thinking about quality of life,” he told us, frustrated with our youth and our seeming naiveté. I remember feeling so small and shaken, standing in front of this man and his dire predictions, and hearing my husband say to him, “All I want is for him to be able to smile at me. That’s all I want.” So we decided to hang on, to fight for that smile.
He’s 13 now, and his smile is infectious. He celebrates every day. Our quality of life is immeasurably greater because of our little Richy. Some would argue that we should have let go, back in 1999. It’s been an uphill battle, but it’s been worth it. I’d let our little guy battle anyone’s assertion that his life lacks quality, and he’s nonverbal. His face says it all.
The following 15 minute clip is from our radio interview on The Grayson Alex Show, where I tell a little bit more of our story.
Listen to our excerpt from the Grayson Alex Show.
Or to listen to that episode in its entirety, go to the show’s podcast.