We haven’t told our daughter about cystic fibrosis yet.
She visits me in the hospital, and will many times in the future. She sees me doing daily treatments, and is here when the agency nurse draws blood while I’m on home I.V.’s But we haven’t given any of this an identity yet.
We treat my CF like a business, or business as usual, with no emotions when I leave for the hospital. It’s a way of life and is like me going on a trip – one she can join on weekends.
I can’t say if what we’ve done is right or wrong – it’s how we’ve handled it. And it seems to work for us. Our daughter loves life, thinks completely about herself and her world and how many treats she’s going to get and how much Wii time she’ll have and just how much fun she can have in a day. That is what I call completely normal behavior for a happy 8-year-old.
I must have the brain of an 8-year-old because I think the same way – when can I have my M&Ms today?
If we gave the battle a name it might zap her buzz. And one day we may have to zap that buzz, but why do it any sooner than we have to?
That’s not to say we’re doing the right thing by hiding it. We each do what’s best for us. We just never mentioned it and are hoping we can prolong it as long as possible. We may, one day, wish we had introduced it earlier, having backed ourselves into a corner. We’ll see.
My wife and I don’t really talk about CF a lot anyway, except for the bills it generates. We try to ignore it, hoping, perhaps, it will get bored and go away. How much broccoli do I have to eat to make that happen?
But my daughter is starting to become aware of my limitations or lack of wind power.
We were scootering up a moderate hill yesterday. My wife, the aerobic animal that she is, shot to the top, while my daughter hung back. I thought it was odd the little scooter maniac stayed behind, as she doesn’t like anyone to ride ahead of her, inheriting her competitive streak from me.
“Why aren’t you up with your mother?” I asked.
“I’m waiting for you. Can you make it up the hill, Daddy?” she asked, in a gentle and loving voice.
Earlier in the evening my wife and I were talking about going to a concert at the Hollywood Bowl and I remembered the big hill you have to climb, which might cause hemoptysis. Little Miss Elephant Ears must have overheard part of the conversation.
So, it was sweet that she showed concern for me in the sincere way only kids can do. But it was sour at the same time that CF created her concern for me.
I’m lucky. I’m lucky. I know. I do know.
But some days CF tastes like a sweet and sour gummi worm – with its brief sweet taste and sour punch – Doctor says: “Your heart is in pretty good shape considering CF” – sweet. “There is, however, mild pulmonary hypertension” – sour.
To which I reply: &$% you, cystic fibrosis, &%(* you, you piece of *$^#. Then I feel better. Much better.