There are two things that I know with all certainty to be true. One, I will go to the ends of the earth for my two children, and two, cystic fibrosis has been, and will always be, a lifelong battle for me. The combination of the two requires a constant state of juggling, and trying to find the balance isn't always easy. In fact, it is incredibly challenging. They are two aspects of my life where there aren't any breaks.
The role of being a mom is one that means the world to me, and it enriches my life more than I could have ever dreamed. The role of being someone with cystic fibrosis is one that takes daily effort on my part -- mentally and physically. I know that skipping treatments for any reason will only hurt me in the long run, and I want to be around for the long run. I explain this need of daily upkeep to my kids, so that they understand why it's so important that I do all that it takes to keep myself as healthy as I can.
Ever since I was little, I knew that I wanted to be a mom. Having CF made me want to have my kids at a young age. I knew that the older I got, the harder it would become living with this disease. I had my son when I was 24 years old and my daughter at 27. My lung function was in the 70-percent range and I felt good. My only complication during each pregnancy was gestational diabetes due to CF. The days that they each came into the world will always be the most beautiful moments of my life.
My kids are 7 and 10 now, which means they are fully aware of the struggles and complications that CF causes every single day as my lungs deteriorate. They have witnessed some very scary situations. They have seen me cough up blood, and have coughing attacks that leave me gasping for air. They've seen me in debilitating pain where I can barely say a word. They have been with me during middle-of-the-night emergency room visits -- when we've had no choice but to take them along -- hair messy from interrupted dreams, with scared, sleepy eyes. They've seen me in the hospital, attached to my IV pole when they've visited during my long admissions. They see the enzymes I take every time I eat for digestion, the glucose testing for CF-related diabetes, the four hours a day of breathing treatments and airway clearance, and all of my home IV antibiotic infusions through the port in my chest. I try to include and involve them in the day-to-day maintenance of cystic fibrosis, so that they have an understanding of this disease and how it affects my life -- and theirs.
This sometimes means not being able to do things with them. CF takes me away from them in many ways, so I try my hardest to bring them to me when I can't go to them. I get up early to get my breathing treatments done so that I can take them to school, and I help them with their homework while infusing my antibiotics. One of my biggest fears is that my struggles will make them grow up too fast. They worry about me and look out for me, even when I tell them that it's my job to worry about them.
I think it's important to keep my kids informed, so that they are less afraid, and that approach has been beneficial for them. While they do, of course, have their own fears, they generally are knowledgeable and insightful when it comes to my disease.
They have met my doctor, so that they understand who she is and that she helps their mom. I've shown them exactly how I administer my meds at home -- from start to finish -- so that they understand the process. We FaceTime at night while I'm admitted in the hospital and away from them for lengthy periods of time, and we blow hospital gloves into hand balloons to keep them entertained in the cramped room. I try to find the silver lining that current technology allows for me to still see them.
They have asked me some very tough questions, ones that no parent wants their child to worry about. Questions about death and what will happen if I die. Those questions pierce my heart, but I try to be open and honest with them. I tell them that anything can happen to anyone at any time, so it's important to appreciate what we have, while we have it.
CF has always made me view life a certain way -- to be present and not take anything for granted, to love my family and friends endlessly. I try each day to teach my children the same. I wish that this wasn't their reality, but my transparency has helped them navigate these uncertain waters. I believe that my struggles have helped shape who they are, to be compassionate and caring, which is really all that I would hope for. They are what keep me going, to fight my battle each and every day.
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