Just like every case of Cystic Fibrosis is a different one, so are the lives living them. Whether you have CF or are raising a child with CF, we struggle everyday with staying positive in the face of adversity and all the challenges that CF brings. Positivity means different things to different people, and being positive can be just as unique as the disease itself. Piper asks a serious questions of all of us in the CF community, "Where does denial end and healthy positivity begin?" Are you staying 'positive' in the face of adversity, in 'denial' about it all, 'hopeful' or just being 'realistic?'
I have never been in denial about Lucy disease. The reality of CF is mine and Lucy's to live everyday, and I refuse to ignore it or deny it. My reality is that my daughter, Lucy, will die from Cystic Fibrosis. There is no maybe in the vocabulary, but there is a when. Cystic Fibrosis is a deadly genetic disease (the CF Foundation prefers to call it life-threatening) that will eventually take Lucy life, but I feel that I do have a choice about how we live our lives together while fighting this CF monster. I do have a choice about how I influence Lucy to enable her to view her world with a positive outlook. I will do everything I can to guide her on a path of happiness and truth. I will never lie to Lucy about her disease. CF is our reality and I will continue to be realistic about the disease, but I will also continue live positively with the life we have in the here and now!
While our past, present and future are always filled with the downside of CF: pills, poop, IVs, hospital stays, ports, feeding tubes, rectal prolapses, antibiotics and colonized bacteria, I never make it a negative point in our lives. Lucy loves going to the doctor. She loves wearing her mask and vest. She takes her enzymes like a champ, swallowing 7-8 pills at a time, and loves chewing her CF Source "monkey" vitamins. It may seem to Lucy that I am making these things a happy time for her. I do the best I can to make these daily treatments that she does, a positive and fun experience. These things we do everyday are the key to her good health and the ability to do more fun things to come in the future.
I never make CF treatments a focal point in our lives but they still must be done. Lucy must grow up knowing that she has to do these treatments in order to live a longer, healthier life with CF. Just as Lucy is learning to brush her teeth to help keep her teeth healthy, she will also learn that treatments must be done in order to keep her lungs healthy. The last two years that I have spent with Lucy have been the most fun I have ever had in my life. I will never take for granted the time I have with Lucy and we will be living our life to the fullest while we can. Lucy is just a regular smart, funny kid, living a fun toddler life, who happens to be living with Cystic Fibrosis.
We will continue to take walks to get ice cream:
We will continue to have fun doing amazing things, creating memories together:
I will continue to be realistic about CF and still be a positive influence in Lucy life. I will be honest with myself and Lucy at all times. I will never stop talking about this horrible disease that will eventually take Lucy's life. I will never hide my emotions from Lucy because sad moments sometimes call for a lot of tears. I will teach Lucy early on, everything there is to know about this disease so that she can feel confident and educated enough to fight this head on. I will always tell Lucy that she can do and be anything she wants to be if she puts her heart and soul into it. Sky is the limit and CF will not stop us from creating the positive, amazingly fun life that we want to lead.
It is completely possible to be 'positive' and 'realistic' at the same time.