I hate the word and what it represents for me.
There is a fear that has regularly stopped me in my tracks for the past 5+ years.
From the day Crosby was diagnosed with cystic fibrosis, I have had to live with the reality that one day, I may watch him lose his fight. The moment that I laid eyes on him, I could not fathom my life without him in it. And when he was 15 days old, I had to try and process the dark cloud of statistics that looms over a CF diagnosis. I have been forced to think about the fact that even if he is lucky enough to surpass his life expectancy, I may likely still spend countless days watching him suffer while I stand by, helpless. The statistics tell us that less than half of CF patients live into adulthood.
I think of all the pills taken and hours spent daily on treatments for Crosby to maintain health. I think of all that CF can bring as the disease progresses: CF related diabetes, feeding tubes, ports, bacteria cultures than can’t be fought off by antibiotics. I carry the heartbreaking reality that he will likely at times fight for his every breath. And it terrifies me to think about how he will process these things for himself mentally.
I am most scared that one day, he will be gone and I will be alone with regrets. I’m afraid I will regret I didn’t take more chances or make more sacrifices to make his wildest dreams come true. I’m afraid I will regret that more days and dollars were spent trying to do all we could to keep him healthy, rather than just spent living.
That same fear also manifests as guilt for even being fearful in the first place – because I do have hope! It is just that Crosby is my baby and it is so heartbreaking to not be able to take this burden from him. I know that CF or not, nothing is ever guaranteed in this life and the only way to live is not let the fear take hold and squeeze out the hope.
Thank you to everyone who hopes, prays and fights for a cure along beside us. As CF awareness month comes to an end, I’m reminded that we are not alone in our fears nor or in our hope. Thank you for for your support and thank you for loving Crosby.
Until. It’s. Done.
Carmen
