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DEFEAT CF

one family's decision to choose hope over despair

View the 2017 Newsletter

Hearing "Your Child has CF"

I will never forget hearing “Your child has cystic fibrosis” on that fateful first day. Hearing my child's name in the same sentence as terminal disease felt like a harrowing blow to the gut. A sentence that took Paige's doctor less than 2 seconds to deliver had me instinctively doubling over and whimpering in pain.


In the days and weeks following Paige's diagnosis, the overwhelming emotions faded into the background as I spent most of my time and energy following the intense treatment regimen designed to keep cystic fibrosis (CF) at bay. But without warning, CF would rear its ugly head and pull me right back to the devastation I felt that very first day.


Over the years, I slowly but surely discovered ways to fight this unseen enemy. The following "tactics" helped me replace my feelings of despair with hope:


1. The love and help from those around us. Paul and I grew up learning to deal with things on our own. With Paige, we quickly realized we needed help to keep our family unit healthy and strong. After struggling on our own for countless months, we swallowed our pride and started asking those around us for help. And guess what? It worked marvelously! Whether it was babysitting, meal preparation, yard work, whatever - having the courage to ask for help relieved the burden on the darkest days.


2. Getting involved with CF families. Nothing felt better than talking with other parents and CF adults that completely understood what our family was going through. They gave me the perspective I needed to hear, and reminded me that we must never let CF control our lives. Over the years, I have gotten some of the best and most effective tips and advice from other CF parents and adults with CF.


3. Volunteering to help others. Following Paige’s diagnosis, people came out of the woodwork to help us out. Family, friends, neighbors, complete strangers (!) – their love carried us through the worst of the worst. Their selfless acts changed each member of our family. After experiencing first-hand how love heals and strengthens, we had no choice but to try to give that same gift to others. Helping others reminds our family how blessed we are, and keeps our hearts from getting hard.


4. Finding doctors we could trust. When Paige was first diagnosed, the medical team treating her took a very aggressive and invasive approach to her care. This approach did not sit well with us, so we decided to get a second opinion at another institution. From the very first visit at the new CF Care Center, our concerns and fears diminished as we instinctively knew their advice was right for us. Once we had doctors we could trust, we no longer felt like we had to become medical experts in an effort to make sure Paige got the care she needed. And having less to do...well, what a relief!


5. Learning alternative ways to supplement Paige's care. We are so fortunate to have so many supplemental treatment modalities available to us today. Whenever western medicine doesn't have a way to treat something, I do not hesitate to research what else is out there. Over the years, we have seen benefit from the following alternative treatments: Chinese herbs (under the guidance of a licensed practitioner) to help with appetite; dietary therapy, Tui Na massage, cupping, and moxibustion to help with colds, sinus problems, and stomach pain; yoga and guided imagery to help with insomnia; and play therapy to help cope with CF.


6. Becoming more spiritual. Before Paige's diagnosis with CF I actually thought I was in control of my life. After helplessly watching Paige endure the pain chronic disease inflicts, I quickly realized I was in control of nothing. It only took one particularly horrible night of watching Paige suffer for me to fall to my knees, look upward, and cry out for help. Amazingly, God heard my plea and answered my prayer. Since that day, I read my Bible, try to follow His rules and work to serve Him. In return, He carries me through the bad days and fills me with a peace and joy I never knew before.