Sunday, March 20, 2016

Reality Check

Last week I was invited to participate in a lecture at Emory University on the topic of cystic fibrosis. Dr. Nael McCarty, head of the McCarty Lab at Emory and my favorite "miracle maker," spoke for two hours on the mechanics of CF, it effects on the body, and the stark realities of its degenerative progression leading to death in early adulthood. At the end of his presentation, I shared my perspective as a CF mom, focusing on initial reactions and early experiences. Telling our story is always difficult and I am usually prepared for the emotional fallout.

Usually.

Hearing in cold, clinical terms the realities of this disease, I was brought low. CF negatively impacts SO MANY functions in the body it is a miracle our loved ones survive as long as they do. As I listened to Dr. McCarty's words, I could only see Caleb's face. My precious son, slowly dying from the effects of this vicious disease. We still lose too many too early and I can do so little to stop it.

I am grateful for Dr. McCarty's invitation to speak from a mother's heart. He understands so well the importance of putting a face on this work and I will gladly speak to any group he invites me to join in the future. As hard as it sometimes is, I know the difference telling our story can make.

I cannot say "thank you" enough to Dr. McCarty, his team of scientists, and countless others working tirelessly to help us battle this disease. I am overcome with gratitude when I think about the people who have chosen to engage their considerable intellectual gifts in this fight. Their work fuels my hope for Caleb's future. As I toured Dr. McCarty's lab and heard about all the incredible things happening there, I was reminded of how far we've come. Breakthroughs are happening all the time and new drugs are changing the progression of the disease. I left Emory's campus feeling hopeful, encouraged, and determined.

We're going to win. You can help. Click here.


2 comments:

  1. This must be devastating to parents. Sharing your story must help so many others. You are an inspiration!

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  2. I see your love for your family in all that you do for them. Your determination to protect and provide the best possible care for Caleb is evident on a daily basis. You make sure big brother, Joshua, knows he's important too. I wonder sometimes what is the cost to your personal health. I see the worry and anxiety written on your face so very often. Yet you are on top of his personal care, his medications, his appointments and his rest daily. You speak when you have the opportunities, you fund raise your heart out all year but especially December through May. You lead our Great Strides Team and you work a stressful job full time. I pray for you more than you can imagine and I love you so very much!! Mom

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