Usually I can maintain a positive outlook and keep a glass half full attitude. I truly believe that God has a purpose for our lives and is using our trials and situations for His glory and good; specifically with our boys being diagnosed with Cystic Fibrosis only 2 short years ago. They have handled everything with courage and determination. Nathan and I are incredibly proud. But to be perfectly honest, I have moments where I am discouraged. Like every single day when I hear their airway clearance therapy machines turn on. Thirty minutes in the morning and thirty minutes at night.
They become so loud it sounds like a helicopter landing nearby. My boy’s bodies shake so hard I’m afraid they’ll vomit. Sure, I am grateful that groundbreaking scientists were intelligent enough to invent such a machine. But I can’t help but feel a twinge of sadness that Carson and Anders will have to do this the rest of their lives in order to remain healthy. Because at this point, there is no cure for CF. Life expectancy is only about 40.
Things that other people take for granted, scare the crap out of me. Like a simple runny nose or a cough. I can pick out the sound of one from across a room and it brings anxiety in me that I can’t explain. A person with Cystic Fibrosis is supposed to stay 6 feet from others that are sick. How can I possibly do that unless I put my kids in a bubble? It feels impossible and overwhelms me. I want my boys to have a normal life. But with CF some things just have to be different. Not all. But some.
For parents the routine of bedtime can be a chore- I remember complaining about getting my kids to take a bath and brush their teeth. But now, those days seem like a breeze. Because the long list of therapies and medications a person with CF must do in order to live to 40 goes way beyond dental care. I wish our family could relive those easy mornings and nights again- before CF was diagnosed. To simply let them sleep in again. Or allow them to stay out and play a little longer in the evenings with their friends again. They miss that. But instead we wake them 2 hours before school starts. It’s still dark out. Anders isn’t a morning person. He has bed head and I help him get his vest on. He wants to snuggle with his stuffed animals as I hand him his first nebulizer.
He’s still half asleep as his airway clearance vest shakes his entire body, moving the mucus out of his lungs, forcing him to cough. Helping him to live longer. People don’t see it. Our boys might appear healthy. And that’s a good thing! But the stack of nebulizer cups that I wash and sterilize every day, the bottles of pills on our counter and the medicine in our fridge, and the machines in their room… It’s hard to hide. The medications are working and I am thankful. But Cystic Fibrosis is multifaceted. It is far reaching beyond just the lungs. It also touches the digestive system and even the reproductive system. People don’t realize but 98% of males are infertile. How do I explain THAT to my sons? I haven’t yet. It’s not fair.
Yes I’m thankful. But selfishly I also want a cure. Because I want my sons to have every opportunity that you and I have- to graduate, get married and someday have children. I know God doesn’t promise us a perfect life here on earth. And that’s okay. I’m thankful for the hope of heaven someday. But as long as I have breath, I’m going to work to make sure my boys do too. In September, 2016 I will be climbing stairs at Target Field in Minneapolis to raise awareness and funds for the Cystic Fibrosis Foundation. If you would like to support my efforts by either joining my team or making a donation, click on this link. Thank you!
http://fightcf.cff.org/site/TR/Climb/80_Minnesota_Minneapolis?px=1690188&pg=personal&fr_id=5351