Breathing Deeply: My Life With Cystic Fibrosis

I believe in a God who is big enough to number the stars, yet personal enough to breathe in me each morning to give me what I need for just one day.









Wow! What a night it turned out to be at the Spring Gala. When I showed up for sound check my hands were shaking so badly that I was afraid I'd never be able to hold onto my horn. Thankfully, there was plenty of time between then and the actual speech for me to calm down and get settled.

During the silent auction portion of the evening, my husband and I milled about, meeting and greeting some of the local influences in the world of cystic fibrosis. I was truly an honor to meet people whose names I had only heard or read about prior to that evening. It was humbling to realize that I was in the midst of people who cared so much about patients with CF that they willingly gave of their financial resources to help find a cure. In some cases, the sacrifices were more than just monetary. There were two men in attendance, each of whom had donated a lobe of his lungs to a CF patient.

I can't believe I was calm enough to enjoy my dinner. Of course, that's usually the only thing a CFer can focus on...food! Surf and turf (filet mignon and salmon). Chet Magnifique!


Then, it was time. The emcee invited me to the front to share my words and my music with the guests in attendance. I had rehearsed both so much that I hardly faltered. I was told to prepare approximately 10-15 minutes of a speech. I had it so well times that it took 13 minutes--even with a few ad libs. As I closed upon the final sentences of my presentation, my voice began to break...

"So tonight, when you set your clocks forward and think about the hour of sleep you'll lose due to time change...please think of me, and all the time that I have already unwillingly had to relinquish to cystic fibrosis..."

Thunderous applause and a standing ovation. I couldn't believe it. Many in the room were wiping their eyes; my parents, sister, and husband beamed at me with expressions of utmost love and appreciation. It was a heady thing. I couldn't even begin to soak it all in. My mind was already preparing for what was next--a solo performance on my French horn, accompanied by a CD track that my husband had prepared on the computer.

I hit some wrong notes. Somewhere in the middle, I got a little out of tune, but incredibly, it didn't throw me completely off. Within moments I was back in the right place, hardly having appeared to miss a note. I summoned up every ounce of strength I had and breathed in one final breath, for that lingering, last note.

I held that G as long as I dared. When at last I lowered my mouthpiece from my lips, the room once again burst into wild applause. I bowed somewhat sheepishly and stood there, sweeping the entire room in my glance. How many were there? 200 some odd people? All had just witnessed one of my personal triumphs.

What sounded to them like a speech and a song by someone who just happens to have CF, was in fact, a culmination of months of hard work and fighting against the disease. A month ago I couldn't sit still long enough without coughing to play the piano, let alone my horn.

It may have been just 15 minutes of fame for me, but it was a tribute to the lifetime of faithfulness that God has been in my life. He has strengthened and sustained me. Without him, I can do nothing. Without his constant presence and comfort in my life, this disease would consume me from the inside out, and would certainly leave me an embittered, worthless pile of ashes.

Labels: french horn, Spring Gala, testimony