CF is a deadly disease. That may sound trite, but honestly, I was surprised to learn the other day that in the medical community, Cystic Fibrosis is classified as terminal.
I've written about it before, but seeing the word terminal to describe the disease that my baby boy has, is just almost too much for my Momma Heart to bear.
Terminal literally means "predicted to lead to death." What a bad word.
Some may argue that we are all, indeed, terminal. And, while it's true that we all have a start and end date in our lives here on Earth, does that fact make it any easier to bear that my baby has something that cannot be cured or adequately treated (for now) and that is "reasonably expected to result in the death of the patient"?
CF is not going away for us, for Crosby. That fact is a long road to acceptance. Acceptance of the word terminal is even harder. He is healthy now, but that ugly, bad word is an ever present black cloud.
So, forgive me when I annoy you by constantly posting about CF fundraisers. But trust me, if your baby was helpless to gross, cruel disease like CF and there was a way that a possible cure could be sought, you too would ask for donations from your friends and family again and again and again. Forgive me when you come to our house and I bark orders at you immediately to wash your hands and use sanitizer (I'll hug you after, I promise). Forgive me if my blog posts aren't always hopeful, lighthearted and just full of pictures. Most days I can be the glass-half-full kind of girl or if I'm not, Lance can gently remind me to relax. But some days, a bad word like terminal can cause the panic and anxiety to creep up within me. Seeing the word terminal can ruin your day.
A word like terminal forces you to stare at the possibility of loss. And the possibility of losing something that you love so fiercely and so dearly, well, it can shatter you. Terminal. Such an ugly, bad word. A constant reminder of what all you have to lose.
Facing a word like terminal forces me to love him differently. Better. Because it forces me to remember that life is fragile. But, I do know that no matter how long or short his life may be, I do know that it's a gift. And I'm trying to treasure every second.
Ah, I'd love to wear a rainbow every day,
And tell the world that everything's OK,
But I'll try to carry off a little darkness on my back,
'Till things are brighter, I'm the Man In Black
-Johnny Cash
To donate to the CF Foundation, click here.
To donate to Great Strides in honor of Crosby, click here.
Love,
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