I’m having one of those days.
Not just a case of “oh, it’s so gloomy & rainy outside…I just want to be grumpy.”
I’m having one of those days of fearing what’s ahead.
Now, I know…stop imagining the future Jen, enjoy today, today was a good day and hopefully tomorrow will be too. I tell myself that all the time. And the majority of the time I believe it, and cherish each moment.
But for the last few days, I have really…really…really hated CF.
Maybe it’s the unforeseen diagnosis placed upon a brand new baby of a close friend recently…that whirled me back to just over a year ago when I really hated having to constantly hear, “you gotta just live for today” and not fearlessly (and let’s be honest, naively) looking ahead into a future full of hopes, happiness & healthiness…consistently grieving the life that shoulda been.
Maybe it’s the fact that the tight knit CF community lost both a thirteen year old & a fifteen year old to the disease….within a week. The reality of the disease smacking me in the face.
Maybe it’s the fact that it’s Great Strides fundraising time again. That time where I am trying to raise money for my son. My son that has an incurable, life shortening disease. Isn’t this kind of stuff supposed to happen to someone else? Isn’t this the kind of stuff you read about, or see on the news, and thankfully say…. “whew, so glad that’s not me.” And knowing that the majority of people reading this are doing what I did for so many years…read a “sad” story, be thankful it’s not them…close the page and move on.
Maybe it’s the fact that this upcoming season, I will have an energetic toddler wanting to splash through puddles, play in the mud…all the while knowing that these same things we touch & breathe in everyday without a second thought, contain bacteria that could potentially be life-threatening to him. That could land him in the hospital. That could add hours of new treatments to his day. That I won’t be able to hold him in my lap all the time anymore now, constantly sanitizing his hands. He needs to be around this, to have a life and to not live life in a bubble…but that doesn’t make it any less scary.
I hate having these kind of days. I hate being scared. I hate looking into his innocent eyes knowing that life is going to be much harder on him than it should ever be. I hate dreading him getting older, knowing that this disease only gets worse. I hate knowing that in reality, right now, there is nothing I can personally do to slow it down.
I hate, hate, hate having to be in a position where I pray every night that we can raise enough funds to truly make a difference for our son’s cause. To help push medications & research through the pipelines. To help the thousands of people around the globe praying every night for the same wishes Casey and I have.
I hate having to depend on doctors, researchers…people I don’t even know to make that difference for my son. Depending on others to create a positive & “healthy” outlook for my son’s future. That it takes an entire team of people to keep his life “normal.” As a parent…I want that control. I want to make things better. And I can’t. And it sucks.
So please bear with me, I am just having one of those days…