"I have debated on posted something like this. I try to keep all my posts as honest and positive as I can, but this post is a little different. This post is full of fear and true emotion. In this post I try to give a glance of a different side of what cf is."
Cystic fibrosis is so much more than just lung and digestive issues. It is doctor visits weekly or every 10 days minimum. It's continually worrying about weight. It's always having a large supply of applesauce to aid with the digestion of enzymes. It's buying the strongest alcohol you can buy to clean nebulizer pieces every time you go to the store. Its stocking up on sterizer bags that I can only find at Target. It's gallons of Lysol, bleach, soap, and purified water. It's bottle after bottle after bottle of hand sanitizer. It's 3-4 new facemasks every time you go to the doctor. It's visiting Walgreens pharmacy at least 2x a month. It's cleaning and sanitizing nebulizer pieces 2+ times a day. It's calling the insurance people to make sure they cover what you need and confirm that you aren't going to get randomly cut off sometime. It's making difficult choices about your child's care when you are clueless on what the doctor is talking about. It's reading thousands of articles to be as educated as you can be. It's being realistic about what cystic fibrosis is. It's dosing medicine and cleaning syringes. It's wearing face masks in public and not saying something to people who stare. It's praying everyday that you as a parent will do all you can for you child. It's always being curious what it feels like for your child to breathe. It's unintentionally hurting others feelings for the well-being of your child. It's being tough and standing up for those fighting cf. It's spending a huge portion of your day trying to raise money for cystic fibrosis research. It's the joy you feel when you hear you child laugh hard. When he has clear lungs and a huge smile. It's documenting every cough, booger, bowel movement, and appetite. It's praying without ceasing that your child will beat all odds. That your child will do everything he wants to in life. It's praying everyday that you will be healthy and always able to assist your child no matter what needs arise. It's beating your child an hour a day to keep him as healthy as possible. It's holding his hands and arms down as he screams during breathing treatments. It's trying to treat him just like any other child his age without cf. It's trying not to be a hermit. It's cherishing every moment. It's praising God every second of everyday for entrusting you with a tiny human who has a beautiful journey ahead of him. It's understanding the significance of doctors and insurance, and genuinely thanking God that you have them. Thanking God that you are covered and cared for. It's crying in the shower when days are rough. It's being strong for your child and never letting him see you scared. It's enjoying every breathing treatment when he does them happily. Its bouncing him in his seat when his treatments soothe him and put him to sleep. It's listening to the coughs throughout the day. It's making sure the hypsersal is completed and the piece isn't just tilted. It's loving life and breathing easy. It's sharing your story with strangers and yielding a conversation about Gods wonderful love. It's trying to tell your story to help another family...
Cystic Fibrosis is hard. To be honest, cystic fibrosis tries to suck(s) the breath out of you everyday. Cf is a journey. It's more than I know... & that's hard. It's hard to not know what my child feels like. What it feels like when he breathes or when his body tries to digest food. Cystic fibrosis is genetic, lacking a cure, expensive, painful, and unpredictable. Cf is a part of our life, but it will never define us. We will beat cf. God has a plan for my son. Although cf sucks it will not bring us down, we will depend on God to take care of us. Words cannot express how thankful I am for my child, how much I love him, and how much he has positively impacted my life.
"Our God is greater, our God is stronger. God you are higher than any other. Our God is healer. Awesome in power"