Tuesday, March 11, 2014

Splashes of Glory

The winter months can be hard for me. After the hoopla of the holidays is over, it often seems like a long, slow climb to spring. Cold weather keeps us indoors and the ever-present fear of sickness keeps us at home. As the months wear on, I start to feel forlorn and pensive. The inactivity lends itself to reflection as thoughts turn inward.  Everything in me wants to hibernate as I trudge through the monotony of the day-to-day, and I long for something to change.

One particularly cold morning, not too long ago, I stood at the kitchen sink looking out into the woods behind our house. I was feeling pretty ho-hum about the day, completely oblivious to the beauty of the winter scene before me. Out of nowhere a bright red cardinal landed in the barren branches and the intense contrast of the scene took my breath away. It was an instant reminder of just how beautiful, how blessed my life is. It shook me out of my doldrums and brought a grateful tear to my eye. In an instant, my whole outlook changed. It was as if God winked at me.

I have recently been reminded in a very big way how intimately God is involved in our daily lives. At times it feels like He is turning a blind eye to our fervent requests and our prayers go unanswered. We feel frustrated, ignored, unimportant. We feel small and insignificant. We may even decide our prayers are without value and stop praying altogether. And then, with almost no warning, He gives us the desire of our heart and we are left breathless with the wonder of his tender care of us. We see the careful preparation of his perfect plan in hindsight and we are humbled by our lack of faith in his timing. In these moments I swear to myself that I will never again doubt Him, that I will have perfect trust from now on. I will stop worrying about the future and instead rest in the assurance that The Lord is already in tomorrow. My faith stretches and grows in these moments and even though my fragile human nature fails time and again, I am strengthened and renewed by these "splashes of glory."

Saturday, March 8, 2014

All Aboard for "Cure Found"!

As many of you know, the search for a cure for Cystic Fibrosis is very close to my heart. As a mom, the hardest part is not knowing what is going on inside my son's little body until it is already causing problems. CF is a vicious, sneaky, unrelenting disease. But with your support, we CAN find a cure.

This past year has been full of many exciting milestone moments. Caleb graduated to a "big boy bed" and said goodbye to diapers and his beloved paci. His baby gibberish has turned into full paragraphs of why he should always get what he wants... and right NOW. He is growing like a weed and always full of energy, even when the adults are worn out. He still loves his trains, but now he can operate them with the precision of a pro. He is such a fun little boy, full of life and mischief. When he flashes that devilish grin and arches his eyebrow, you can't help but laugh.

We have also had some hard realities to face this year. In February of 2013, Caleb's doctor moved out of state and we began the difficult task of building trust with new doctors. Caleb started using Pulmozyme daily in March, a life-long breathing treatment we thought wouldn't begin until he was at least five. Phase 3 results of the clinical trial for Kalydeco on R117h (one of Caleb's mutations) were not as positive as we had hoped, and it looks like Caleb will not benefit from this drug after all, at least not anytime soon. Caleb's most recent illness brought with it the very real possibility of a hospital stay. Although he is doing well now, that was the the scariest experience we've had so far.

Still, there is so much to be grateful for. The CF Foundation continues to provide critical financial support to those who are searching for a cure for CF. So many life-saving breakthroughs have happened in the last handful of years - thanks in large part to donors and supporters like you. I hope you will join us in the fight against this terrible disease.

This year, Caleb's Conductors will be walking in the Atlanta Great Strides event on May 17th. Here are a few ways you can help support our team:

Donations are always appreciated, are tax-deductible, and can be made through our Great Strides team webpage. You can also spread the word to your friends and family by sharing this blog post with your entire email address book or on your Facebook page. We'd love for you to join our team and come walk with us on May 17th at the Georgia Tech Campus! Whatever you choose to do, know that you have my deepest gratitude. Not a day goes by that I don't wish, hope, dream, and yearn for a cure for CF.

Thank you for your many prayers, your love, and your support. It means more to me than mere words can say!

CF Sucks

Gunnar Esiason posted a blog on the topic of social media privacy last year and it has me rethinking the level of detail I include in ...