I just told my husband that I have something on my mind. Someone today said that CF is inevitably going to take your life if you have it. Death rate is 100 percent. Don't do that. Don't say that. Don't be negative. Yes, I get it. CF is brutal. CF is a beast. It is a nightmare. Its that fight you want to win all the time. Yes it is hard. Yes it is what we all want cured but think about the little kids who look up to you. Who think you are great... I have an issue with that. That is my cross to bare but I don't like that you said that.
The CF world is so hard. The loss is great but my life is greater. I am a mother to two of the most amazing little girls in the world who see life as a joy, who see their mom smile everyday or scream depending on my mood just because they are acting crazy. They see good. Don't ruin something for them. Be positive. I know a lot of people are very negative on this disease b/c it doesn't always have a great outcome. My world is my two girls. Two CF children. Two different battles even though they have the same disease. They are so different. One is doing fabulous, on the road to being a cheerleader in middle school, getting backhand springs at gymnastics, and smiling everyday and acting crazy just like her daddy. My youngest has a bigger battle. Not only does she battle CF, but asthma, type 1 diabetes, center pain, neuropathy pain, etc. and she is loving life even though everyday something knocks her down. She is my strong willed child. She will fight me to the depth of everything. She is fighting so much, she gets mad, she screams, she says I cant do it which drives me crazy b/c in our house, there is no I can't. Only I cans. She is her daddy and his attitude side. Poor greg is taking the blame but I will take the blame on pyper and her attitude b/c it is me, and trinity is me in my nurturing side. She loves big and has a huge heart. Get mad at me and I will tell you I don't care because saying stuff like that only makes it hard on the younger generation. Be positive. My kids know what CF can do. I don't sugar coat anything, They know the life it can deal you. The only thing I can do is raise them to do all their treatments, and take all their medicines and try to do their best. Remember be positive even though you want to be negative but remember you have little eyes, and ears who think you are amazing and the journey you go on with CF... Love, Smile, and send positive vibes to those who are still in this battle. Who fight everyday. Who want to live.
As I said, Trinity is doing pretty good. Running a 8 minute mile with her daddy at the gym and doing gymnastics and cheer. Pyper has a different battle but we are working on making her life great like her sisters. Trinity is getting ready to start the new medicine Orkambi and I hope this medicine makes her life so much better. Love hard, Smile a lot, and make memories that last a life time. God gives you one life. Make memories with the ones who care. The ones who love you through every step of your battle. I am a home body, I love my girls and hubby with every ounce of my being. I only want to be with them and sometimes my family gets mad at me and that is ok. I get it but my heart is them. My life is them. My world revolves around my girls and hubby. My only smile, my only heart, my only life I get is this one and I want it to be surrounded by my life and I do that everyday.
This CF battle I do two times everyday. I take it to heart. I want give up b/c my cargo I worry about is my life. my two girls who mean everything to me. They are my reason I breathe. Stay positive on this journey called life... Pray often, smile a lot and make memories that last a life time. I have one life and I am going to make god proud of me. He may say momma you need to live a little and step back from your kids but I can't do that. My one job that I take to heart is being a mom and wife. I love hard, I cry hard and I fight hard.
Don't give up hope.
All my love,
Mom of two of the most amazing cfers on the planet.
Martie
