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Why I Believe Faith and Science Can Coexist As the Parent of Child With a Disability

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Have you ever wondered if faith and science can coexist? I have. My 6-year-old daughter lives with cystic fibrosis, and from the moment I learned of her diagnosis, I have believed wholeheartedly in the power of both faith and science to shape my daughter’s future and my own outlook on her life.

Every evening, I hold my daughter’s hand and pray with her as she lies in her bed. Our final verse is always the same. “Please watch over my baby. May she be healthy, happy, safe, and strong. I am so proud of her, and I am so glad that you gave her to me.”

When something particularly nerve-wracking is happening, I give my daughter a tiny porcelain angel to clutch. She holds it during blood draws at the hospital and during everyday occurrences that bring her worry. Yesterday, she held it in her palm as she walked into school by herself. Her big brother wasn’t there to take her to her classroom, and she was nervous that she couldn’t navigate the school’s maze of hallways herself. She could have walked those halls in her sleep, of course. But I like to think the angel gave her a little extra confidence.

I routinely am reminded of what my daughter’s pulmonologist told us at our very first clinic visit. “Your daughter is going to live a long and full life. It’s my job as her doctor – and yours as her parents – to help make that happen.” From that day on, I put all of my trust in this amazing woman. She led the creation of evidence-based approaches to cystic fibrosis care in infants and preschoolers. She was the principal investigator for a number of clinical trials. She was a mother herself and knew from that first appointment how to speak to me as a partner, a fighter, and a protector. She encouraged questions big and small. She gently reminded me to not “put my daughter in a tower” and gave me the subtle but effective eyebrow raise when I got wound up over something relatively benign. She also took an aggressive approach to treating illness. Over time, she gave me confidence that no matter what came our way, she would be there to see us through.

When our daughter’s doctor moved across the country to be closer to her family, our confidence didn’t waver. She had trained her protégé, her whip-smart and compassionate former Fellow, to treat cystic fibrosis in the exact same way. That’s the beauty of medicine. One person alone doesn’t have to bear the load. Others can be taught and trained to follow the same clinical pathways and to give families the confidence they so desperately need.

Every evening, my daughter and I thank God not only for our doctors, but for the medications that help us stay healthy. I am acutely aware that without scientists’ tireless devotion to improving the management of cystic fibrosis, our lives would be very different. We wouldn’t have a rich selection of antibiotics to treat illnesses. We wouldn’t have the medical devices to perform respiratory therapy on a daily basis. And we wouldn’t have the groundbreaking medications that help address the underlying cause of cystic fibrosis.

This October, the U.S. FDA approved the first triple combination therapy available to treat people with the most common cystic fibrosis mutation. When my daughter was diagnosed in 2013, only one therapy of this kind existed. It was available to 4 percent of the cystic fibrosis population, which did not include my daughter. Six years later, we have a medication that can treat roughly 90 percent of the population, including my baby.

That is why I believe so fiercely in both our pulmonogist’s words and in the plausibility of my prayers. My daughter can live a long and full life. My daughter can be healthy, happy, safe, and strong.

It’s like the Serenity prayer says:

“God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

To all those who have the courage to change the things you can, I salute you.

To the scientists who push research forward, you are changing lives.

To the friends, family members, and strangers who give from their pockets to help fund scientific breakthroughs for chronic diseases, a little bit can go a long way.

To the doctors who devote their lives to treating patients, you are our rocks.

And to all the warriors who tirelessly bring awareness and advocacy to the cause, you inspire hope and courage every day.

I have faith in God. I have faith in our physicians and scientists. I have faith in our community.

And I have no doubt that all three can coexist.

This story originally appeared on Paint Her in Color

Originally published: November 22, 2019
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