Starting this blog post was a hard thing for me as putting this down on paper is not easy for me. When Dan asked if I would be willing to share something about CF to help promote Cystic Fibrosis awareness month I was all in but actually writing it was a whole different story. Where do I start? What do I want to share? Should I talk about the gift of CF, the challenges of CF, what life is like with CF, life with kids and CF? All questions that kept swirling in my mind so I thought I would just start and let it lead where it may.
I was diagnosed at the age of three and at that time my parents were told that I would most likely not live long enough to see my 12th birthday. Well 32 (almost 33 years) have passed since then and we are still here kicking at 35 as a college graduate, working full time, married to the most incredible woman I know and a father to two of the kindest and funniest little humans (I may be slightly biased but they are the best!).
From hospital stays, to missing school, to surgeries to today’s battles with depression and anxiety, the journey has not been without its struggles and its challenges. But with the struggles comes a true appreciation for the little moments and the little victories that happen every day is what amazes me. Growing up, I played sports constantly, never really thought about the future as honestly, I didn’t know what it was going to be. I didn’t think about the consequences. I mean, I managed a bar in a college town when people could still smoke indoors. But, if I had not done that I would not have met Julie. Yes, did that have a negative impact on my health, in the long run, sure it did, but what would my life be now? Most likely without Julie and my kiddos, the support system that focuses my fight and encourages me to keep fighting for every breath.
Yes, it is a fight. There are days when it hurts to walk up a flight of steps or you have to stop when walking from your car to the parking lot. There are moments when you are by yourself with your kids and you have a panic attack scraping ice off your car. The panic is real because it is hard to breathe and so you have to ask them to get out of the car and come in the house so daddy can calm himself down. And it’s hard to explain it to a 6 and a 3-year-old in a way that makes dad “normal” and keeps them feeling safe. The fight and the struggle are constant.
It is not easy to remember which pills you take this month and which ones you take next month. It’s not easy to remember to order the meds far enough in advance that they can be processed and shipped so you don’t miss a day. It is not easy to say no to friends, your wife or your kids because you have to do treatments or you are just in so much pain that you need to sit or you simply don’t have the energy.
It is a struggle to come to grips as you watch your lung function fall for six months with no answer as to why or no sign of it stopping. It is a struggle to come to grips with the fact that a life-saving transplant could be the only thing that saves you and allows you to continue living a life that you had cherished for so long. It is painful to watch loved ones struggle to understand the what we are going through and to face the wrath of our anger or the sadness of depression of it when it all becomes too much to handle and our hard candy shell comes cracking apart.
But for all the struggles, the pain, and the constant fight to take a simple breath there is a hope, a love of life and immense strength that comes with CF. There is an ability to find the smallest of good and joy in a situation that to others would be so dark. There is an appreciation for that simple breath, the ability to let air fill the lungs that are so often taken for granted. It’s crazy to think that breathing can be taken for granted but stop and ask yourself when was the last time you really noticed your belly and chest rising as your lungs filled with air and stopped to wonder how incredible the act of breathing really is.
Having CF (and with the help of meditation) has allowed me to stop and take stock in the fact that I woke up and filled my lungs full with air (full being the relative term), to love the moments when the windows are down and the sunroof is open and the music’s too loud and I look crazy signing at the top of my lungs (usually to Mumford and Sons, Widespread Panic, maybe some Michael Jackson or anything else with a beat and deep bass). To cherish the moments in the early morning hours when I hear the stampede of little feet running down the stairs and across the living room through the kitchen and down the next set of stairs to the basement to say “good morning” and hang with dad (who is doing treatments) before breakfast and school.
Some would say that “they have CF but CF does not have them,” I would say that yes I have CF and CF does have me, it helps defines who I am, it decides how I live my life and the decisions I make each and every day. But that is a good thing. It has not stopped me from doing the things I have wanted to do or love the people that I love. I believe that in all of us with CF it creates a drive to outlast this disease as best we can and embrace the moments that make up each breath!
As I have sufficiently rambled my way through this (and I thank you for making it this far), I write all this on the page not looking for sympathy or empathy but to spread awareness into the struggles of cystic fibrosis (and all those it touches). I hope I was able to highlight the incredible resilience, compassion, and strength of the CF Community. I will leave you a simple question, “What will you do today to make someone else smile?”
“But for all the struggles, the pain, and the constant fight to take a simple breath there is a hope, a love of life and immense strength that comes with CF. There is an ability to find the smallest of good and joy in a situation that to others would be so dark.” – Chad