by Krista Chenoweth
I want to start off by telling you not to say you’re sorry. People in the CF community know how to fight. We’ve all come up swinging more often than not—and we’re winning. Don’t say, “those poor babies”. Nothing about these babies is poor. Nothing.
My oldest son, Simon,
was diagnosed with Cystic Fibrosis at 2 weeks old. He’s now a year and a half old, and completely symptomless. Receiving such a horrifying diagnosis as young, new parents, was paralyzing. We received the diagnosis on my 25th birthday. My husband, Jake, was 28. I remember crying to God, yelling at the top of my lungs, “Not my baby!” over and over, hoping He would hear me and take it away. Jake held us both in his arms while I cried into my new baby’s pretty blonde hair.
We cursed, yelled, and fell apart. But we put each other back together again. This doesn’t change a thing—Simon is ours. Jake said, “Simon’s going to take CF by the horns.” And that’s exactly what he did. His doctors wanted him to gain 8 ounces a week—he gained a pound a week. He smiled, laughed, held his head up on his own, all entirely too early. His pancreatic enzyme tests all came back normal, and his chest X-ray came back completely clear. There are 220 recorded cases in the US of Simon’s specific mutation. 80% have to take enzymes to gain weight— Simon is in the 20% that doesn’t. His lungs are clear, and functioning perfectly. He breathes easily. Every day, we give all glory to God.
We learned a lot in those first few weeks. About our baby, about each other, and about CF. Although, it did seem like there weren’t any stories of minor/asymptomatic cases, other than ours. Even with Simon’s health, Jake and I still found ourselves catching fear and hideous thoughts creeping up on us. Healthy cases of CF just didn’t happen. I didn’t take my research too far without being horrified, and backing away from the stories that fueled my own fear. So, Jake and I started telling our story. We started educating people. We started fueling people with hope for a cure. We corrected people who thought a CF diagnosis was a death sentence. We started planning an annual fundraiser to support the Cystic Fibrosis Foundation. We told people, “don’t look at him and think he’s sick”, just as God told me when Simon was a newborn.
When Simon was seven months old, I found out I was pregnant, again! I spent that first night a nervous wreck. Jake and I knew we wanted more kids, but I wasn’t ready to face the possibility of another CF diagnosis. The anxiety only lasted the night. Throughout my entire pregnancy, I was certain I was carrying a healthy baby. Our second son, Abel,
was born this past June. He is absolutely gorgeous. The first two weeks after his birth went by, with an abnormal heel stick heavy on my heart and mind. I knew my new baby was healthy—but I didn’t know if he had CF or not.
Jake took our sweet Abel to Riley Hospital for a sweat test. After the test was complete, I spent the day with Abel, while Simon and Jake went to the fair. We went on a walk, picked wildflowers, listened to Lynyrd Skynyrd, and napped. It was a perfect day. Around 5pm, I got the call that Abel, too, was positive for Cystic Fibrosis. We’re officially 2 for 2. I wasn’t surprised, but I wasn’t happy. This time around was easier, but it still wasn’t easy. I was confident Abel was healthy, but I was pissed about the positive result. For a little while, I felt like God had dropped me and left. I felt alone, and even punished. That didn’t last long, as I was quickly reminded that this battle has already been won. I’m reminded every time I look at Simon, that Abel will continue thrive. He’ll continue to completely astonish me in his own way. He’ll keep gaining weight, and breathing easy. I’m reminded every time I look at Abel, that he, too, is made in God’s image. I’m reminded by close friends and amazing family, that we’re not alone. Simon is my strength, and Abel is my peace—and they have absolutely no idea.
If I had to give advice to parents with a brand new baby, with a brand new CF diagnosis, it would be this—not every case is going to shatter your world. God has chosen the CF community to begin curing. Strides have been made in research, therapies, and medications, even just since Simon has been born. Hope is ever present. Move forward knowing you’re not alone, and you will NEVER be alone. Teach your children to fight, to be a voice, and to take CF by the horns. Talk about it. Educate those who don’t know. Re-educate those who think they know. A cure is right down the road, and we’re coming up on it quickly. Us, in the CF community, don’t scare easily. You’ll learn that, too.
Bio;
Krista Chenoweth
Mother of two children with CF
Krista is a 26 year old mother of two sons, Simon and Abel. Both boys have been diagnosed with CF. Krista is a stay at home mom, with growing attempts to become active in advocating for the CF community through fundraisers, benefits, and campaigns for the Cystic Fibrosis Foundation, Colton Underwood Legacy Foundation, and Riley Hospital for Children. Krista’s house is full of boys, dogs, pizza, Motley Crue, and Jesus. Krista lives in small town Portland, Indiana with her husband, Jake, sons, Simon and Abel, and dogs, Reggie and Opie.
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