You'd think the day you find out your little five month old baby has a genetic disease that is the equivalent of a death sentence, would be the absolute worst day of your life. Well, you'd be wrong. What actually happens is, you end up feeling blessed because of a salty kiss and a tiny bit of knowledge from way back whenever. You know you should feel sad, but you are thrilled to be given a precious head start. Months, maybe years, to protect your little baby, and your own heart. Time is on your side.
And, quicker than even seems possible, that healthy baby is a healthy teen. A rebellious, funny, intense, larger than life, healthy teen. Everything is on his side. Life is his for the taking. His future, so wide open and brilliant. Congratulations to the boy who is such a brave miracle, and his mom, who must be so brave and strong, herself.
Until the day he coughs up blood. And everything changes.
Suddenly, reality... real reality, is in your face, shaking you out of that blissful cocoon of denial that had been keeping you so safe and warm for all those years. Sure, the doctor has a plausible explanation, but come on... who coughs up blood? Healthy people? No. If your other child, your "normal" child, coughed up blood, you would be a mess. And here is your big boy, with a lung disease, coughing up blood. All you're feeling is a dulled, depressing nausea. And sadness.
So very suddenly, you realize you really aren't very brave at all. Like not at all. It's easy to keep a smile on your face and stay positive when you haven't had to spend one fucking minute actually worrying, other than in theory, about your child's health or future. Sure, it sounds awfully impressive... "Yes, my child has cf and we will probably out-live him." You can get the words out without a tear, and you seem incredibly fearless. But you really aren't. You are nothing, because what no one knows, is that up until today, you didn't actually believe your own words. Your denial was so ingrained into your actual being, that the words would come out flawlessly, never making contact with your heart, much less your soul. Airtight. Your life support.
And now it's gone.