Chris and I were asked to speak in front of our church about Lauren, her CF diagnosis, and our faith journey since her diagnosis. I was not thrilled about this. Although I teach, I'm not a huge fan of public speaking. Although, I actually don't mind standing up in front of 20-somethings talking about science. Talking about my child who has a life threatening disease, and how somedays I'm just mad at the world for this happening to her is not something I really wanted to do.
Once I actually sat down and out pen to paper, it didn't seem so daunting, and actually came pretty easy. Here is what Chris and I said to our church:
We are The Sielicki’s. We have been attending First Baptist Clemson off and on since the mid-90’s when we were students. We moved back to the Upstate a few years ago and looked for a church home and eventually found our way back here thanks to the CEC program and our forever adopted parents Kappy and Whitey Jordan.
We have 2 beautiful daughters- Alli and Lauren. Alli is 5, going on 15, and will be starting kindergarten in the fall. She has been coming to the CEC since she was 7 weeks old. Lauren was born on July 25, 2012, and will be 9 months next week. Everything was normal until I took her to the pediatrician for her routine 2 week check-up. Instead of gaining, she had lost weight since being in the hospital, and so the pediatrician wanted us to increase her feedings, and come back a couple of days later for a weight check. We went back a few days later, and Lauren had only gained a few ounces. The nurse greeted me with “you’re here to see the doctor about the newborn screening results, right?” It was then that a huge lump began to form in my throat, and I could barely hold back tears without knowing anything. The pediatrician came in and said that Lauren’s newborn screening results had come back and one of the tests that screens for cystic fibrosis had come back abnormal. She briefly talked about Cystic Fibrosis, and gave us a little hope in that they had a few newborn screenings come back abnormal recently, and when they re-checked, everything was fine. Unfortunately, that wasn’t the case for us. On the afternoon of August 24, 2012, we found ourselves in the pediatric pulmonologist’s office finding out that Lauren did have cystic fibrosis.
For those of you who don’t know, Cystic fibrosis is a life threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. The clogging of Lauren’s lungs will lead to frequent severe lung infections which will damage her lungs and eventually will lead to a lung transplant. The clogging of her pancreas leads to her not being able to absorb fats and vitamins properly. The most difficult part to comprehend is that on the outside, she looks perfectly healthy, yet on the inside, that’s not the case. Currently, Lauren takes the equivalent of 14 pills a day, plus breathing treatments, steroid inhaler treatments, and chest PT to maintain her health since there is still no cure for cystic fibrosis. In the 1950’s, a child with CF would generally not live long enough to attend kindergarten. The good news is that many advances have been made to increase the life expectancy into the mid-30’s, and we’re hoping and praying that will continue to increase. The hardest part of being a parent of a child with a life threatening disease is the thought that we could out live her.
August 24, 2012 is one of those days we’ll never forget. It was like getting hit by a bus. Getting the news about our sweet newborn shook us to the core. “Why would God let this happen to us” kept coming to mind, and to be quite honest we’re still working through some of this. Some nights when she’s coughing so hard and can hardly catch her breath, it’s hard to understand. Every day, but in those days specifically, God has been faithful and he has provided just enough grace to get us through and we have faith that he’ll continue to, no matter what we face.
God knew what he was doing when he led us back here. By coming back to FBC, God has placed some truly special people in our lives who we lean on daily. Thank you for being there for us ready to step in in any situation. We couldn’t have gotten through the past 9 months without you. We feel like you’re a part of our family. Lauren has also been attending the CEC, and we can’t thank Becky and Lauren’s teachers enough. They have taken such wonderful care of her, and have bent over backwards to make sure she stays as healthy as possible. Since her diagnosis, Lauren has also been on the long term prayer list. We can’t begin to tell you how much it means to come home, get the mail, and have a little postcard from a person on the intercessory prayer team be there in the mailbox saying “I prayed for Lauren and your family today.” It’s so comforting to know someone else is praying for Lauren and for us too. Those postcards always seem to come just at the right time. For those of you who have kept us in your prayers, thank you. We will certainly continue to need them through our family’s journey with CF. In those early days of her diagnosis through all the uncertainty, grief, and sadness we were working through, your prayers, calls, and emails are what carried us through and reminded us that God was right there with us and always will be.
We want to teach our girls, as well as those around us that you can be devastated by disease, pained over tragedy, depressed over your circumstances, and still have hope. Hope in our God, His plans, and His future for us. We have hope for a cure for Lauren. We know that God has big plans for Lauren, Alli, and our family, and we’re looking forward to them being revealed to us.
