Friday, December 16, 2016

Raising Awareness with the Xtreme Hike











What is Cystic Fibrosis?
Cystic Fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps the bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients. 

Everyday, is a fight with cystic fibrosis. A fight to live. A fight to breath. I am not even the one with CF and it just… crushes you sometimes. The fight. It’s just never-ending. There is no “breaks” You don’t get to just take a day off. You have no choice, but to just fight. And keep fighting. Until we win. And we will eventually win. 

I remember the day they told us Molly had cystic fibrosis, so clearly. It was just a typical morning for us. Molly was just one week old. My husband, Chase, stole her from our room so I could get some sleep and he was making breakfast for us and our two older children. At some point he came in and roused me awake. I just remember his face. He just had this look.  He had the phone still in his hands and was holding it to his chest like there was someone still on it. And then he told me. Shalyse, the doctor called and said Molly has cystic fibrosis. I was still groggy but I bolted straight up and said what?! He repeated it but he didn’t need to because I heard every word. I just laid into my pillow and started sobbing. I just laid there and ugly cried. I just cried and cried. I could hear him talking to our pediatrician, who was apparently still on the phone, and then he came over and just held me. He cried with me and kept saying I'm so sorry, shalyse. Im so sorry. That was the moment cystic fibrosis changed our family’s lives forever. I remember having to call our parents and siblings to tell them and I didn’t want to. Because every time I told them it just reminded me of that moment. That crushing despair and feeling of hopelessness. 
The day we met with the doctors, something flipped for me. I don’t know if it was something someone said or what it was. But i just started feeling like, girl you need to get your crap together and man up. you can do this. It was the feeling of hope again. Hope and determination. I wasn’t going to let cystic fibrosis win. I was ready for battle. 

That first year…. Man it was rough. I still had so much grief and sadness. But gradually I gained more and more hope. The more time went on, I quit treating Molly like she was a time bomb and like she was going to leave this world as quickly as she came into it. I learned a lot about myself that first year. My strengths and weaknesses. I learned a lot from Molly. She was literally a bright shining light in our life, a true sunshine baby. She was smiling always. Just soooo happy. Her infectious laugh was all the medicine we needed to heal. 


Life with cystic fibrosis…… it’s complicated. All the medicine, Breathing treatments, insurance battles, doctors appointments…. soooo many doctors appointments. Just the day to day stuff. It’s a lot. It’s an everyday fight to live a long and healthy life. The type and severity of CF symptoms can differ widely from person to person. Treatments are tailored to each individual’s unique circumstances. For Molly, she currently does three inhaled medications along with her vest machine. These treatments help to break up the mucus and keep her lungs clear. She has 10 other daily medications and supplements she takes on top of her two breathing treatments. And 2 of those medications were just recently added into the routine. She does this everyday just to stay healthy. So that she can live longer than the median predicted survival age of her 30’s. My age. This. This is a dramatic improvement from the 1950’s, when a child with CF rarely lived long enough to attend elementary school. Because of tremendous advancements in research and care, many people with CF are living long enough to realize their dreams of attending college, pursuing careers, getting married and having kids. While there has been significant progress in treating this disease, there is still no cure and too many lives are cut far too short. When a group of parents started the Cystic Fibrosis Foundation in 1955, they set their sights high - to advance understanding of this little-known disease, to create new treatments and specialized care for their children, and to find a cure. The CF Foundation has carried these goals forward and is working tirelessly to find lifesaving new therapies, and one day, a lifelong cure for all people living with this devastating disease. Nearly every CF drug today was made possible because of Foundation support. This year we decided to help raise awareness by participating in an extreme hike hosted by the CF Foundation. We will raise funds in the coming months and then in May of 2017, we will hike the Grand Canyon rim to rim in one day. By doing this hike we hope to meet our goals of adding tomorrows to the lives of those living with cystic fibrosis. Adding tomorrows for Molly. To give her the best chance at living a long and healthy life. Help us by sharing our story. Help us raise awareness by donating what you can be it funds, time or love. Help us continue to get closer to CF standing for cure found. 

2 comments:

  1. Great post! Love to meet others on the CF treadmill! #cfisnotforever cfisnotfirever.blogspot.com

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