What I want my niece to know about her genetic disorder.
My dearest Norah Gene,
The very first time I ever heard you cry, I cried too.
You, my sweet niece, were almost three months old, and though I’d seen you many times and held you a few, I’d never heard you make a sound. You did cry, of course, but you’d had a breathing tube down your throat since 20 minutes after you were born, and after that, your trach kept you from making any sound. It wrenches my heart to watch your face scrunch up as you cried, but hear nothing but the alarms of your monitors.
But on September 10, 2015, the nurses at Children’s Mercy Hospital took you off of your ventilator for a few minutes and put a speaking valve on your trach—resulting in this beautiful sound. It was only the second time you’d ever heard yourself make noise, so it’s no wonder that you seemed a little surprised. Your momma’s heart was bursting as she held you and listened to you complain and sneeze, and I showed that video to everyone I could.
I know by the time you read this you’ll be an expert on CCHS—the genetic disorder that stops your breathing when you’re asleep. It’s the reason why you have a trach and a ventilator, and it’s your daily reality, a part of your normal. By the time you read this, you’ll be used to the speaking valve, and you’ll be able to talk and sing and hoot and holler just like every other kid. You’ll have plenty to say, I have no doubt!
But my dear niece, I want you to know that you have a voice that’s even bigger than that.
As I write this, you’re not even six months old yet, but you’ve already impacted so many people. We started a simple blog the summer you were born, because everyone wanted to keep up with your story. Each post is being read by hundreds of people, and the site has been viewed tens of thousands of times by people all around the world.
I can’t even begin to tell you how many conversations and connections have happened because of you. People are asking about you and praying for you and learning about CCHS because of you. We’ve seen an outpouring of generosity from family, friends, acquaintances, and total strangers as they’ve sent money, gift cards, meals, and more to our family. Your story has given us a chance to see what true community looks like and to be blessed by the generosity of others. And your story has been a source of joy and proof of God’s faithfulness to many.
You have a voice, Norah Gene.
For some reason, God has given you this opportunity to speak to hundreds (and even thousands!) of people—and they’re listening. Right now they’re listening to us tell your story, but someday, they’ll listen to you tell your own story. They’ll hear your bravery and your resiliency and your determination in the words you speak and in the things you do. They’ll see the way you love well and how you have compassion on people the world says are different. But most importantly, they’ll hear God’s story, because He is doing something beautiful through your life.
It might not feel like it right now, I know. It certainly hasn’t always felt like that for us during these first few months of your life. We still have a lot of unanswered questions and a lot of doubts and fears. But I do know and believe that God has given you a very unique voice in this world, and I believe He is going to use you to spread hope to lots of people.
It’s pretty crazy that “Gene” is your middle name when genes are proving to be a major character in your story. But you know what? CCHS and your genes do not define you. “Norah,” however, means “light,” and I can’t stop thinking that you are a light, in part, because of your genes.
You have reminded us, in a very real sense, that every single breath is a gift. I’ll admit that I still take that for granted a lot of times, but when I think about you, I am so thankful that God has given you another breath—and then I thank Him for mine too. So use that breath, use that voice to be the light that you are. And know that you are immensely loved, and that there are so many people cheering you on.
You have a voice, Norah Gene. Never be afraid to use it.
All my love,
Photos courtsey of Jacqueline McClurg, Mae Rain Photo