Lily had a wonderful weekend! Friday marked 1 whole week on Kalydeco. Glad to update that she is still doing GREAT! So full of energy, big appitite, and breathing easy! Kalydeco has truly been a miracle put into our lives when we needed one the most.
Being the parent of a child with a genetic disease is HARD. I cannot sugar coat it & act like it's not. I am horrible with showing emotions and these past few months have really tested me. The past few months have truly been the hardest experiences I've ever gone through & continue to go through daily. Cystic Fibrosis is such a cruel disease that takes you on a roller coaster ride. One day you are high up, feeling like you can take over the world. The next day Lily can feel horrible & I feel so low that I don't understand how I am suppose to deal. It just throws you around and doesn't care how much damage it does along the way.
I hope that everyone who follows our family's journey and prays for Lily knows how incredibly blessed we feel to receive your prayers & support. Everyone with CF deserves a second chance at life. It is amazing how strong these people are. Last night we attended the 45th annual Denny Crum Celebrity Dinner Party for Cystic Fibrosis. I met a woman who was in her 40's who had CF. She said, "Hunny, I am doing great, I'm not going anywhere for a LONG time!" Hearing things like that give me great hope for Lily. Even though the odds are against people with CF, there are still many who beat those odds. With generous people who donate and spread awareness, I can keep my faith high that Lily will have a very bright & happy future ahead of her. We met so many great people last night, including Coach Denny Crum & his beautiful wife Susan Sweeney Crum! Lily had so much fun. I'm so glad she was able to come. Over $100,000 was raised at the event, which is absolutely amazing!
Lily is sleeping soundly right now. Tomorrow is Monday. It'll be her first full week back in school & me back to work. So blessed!!
Being the parent of a child with a genetic disease is HARD. I cannot sugar coat it & act like it's not. I am horrible with showing emotions and these past few months have really tested me. The past few months have truly been the hardest experiences I've ever gone through & continue to go through daily. Cystic Fibrosis is such a cruel disease that takes you on a roller coaster ride. One day you are high up, feeling like you can take over the world. The next day Lily can feel horrible & I feel so low that I don't understand how I am suppose to deal. It just throws you around and doesn't care how much damage it does along the way.
I hope that everyone who follows our family's journey and prays for Lily knows how incredibly blessed we feel to receive your prayers & support. Everyone with CF deserves a second chance at life. It is amazing how strong these people are. Last night we attended the 45th annual Denny Crum Celebrity Dinner Party for Cystic Fibrosis. I met a woman who was in her 40's who had CF. She said, "Hunny, I am doing great, I'm not going anywhere for a LONG time!" Hearing things like that give me great hope for Lily. Even though the odds are against people with CF, there are still many who beat those odds. With generous people who donate and spread awareness, I can keep my faith high that Lily will have a very bright & happy future ahead of her. We met so many great people last night, including Coach Denny Crum & his beautiful wife Susan Sweeney Crum! Lily had so much fun. I'm so glad she was able to come. Over $100,000 was raised at the event, which is absolutely amazing!
Lily is sleeping soundly right now. Tomorrow is Monday. It'll be her first full week back in school & me back to work. So blessed!!