There is a new army growing, destined to fight this disease – an army that proves we are winning the war against cf and who may help us win it.
The children of adults with CF.
I am lucky to have one, a daughter. I wish I had two, but it just didn’t work out that way. The one my wife and I have is perfectly imperfect. Every day and moment watching her grow up is special.
What will be challenging to watch, however, is how cystic fibrosis affects her life. We know her dad, me, has it. Her mom is not a carrier (we checked before having her). So, my daughter is a carrier. She is physically touched by cf.
My daughter and the rest of the children who are growing up with CF parents have automatically been drafted into the battle. And just as life reveals itself each day to her as she ages, so will cf in three ways:
1) My health and weeks in the hospital. Not every kid spends weekends visiting their parent in the hospital, getting prompted constantly not to touch the floor with bare feet and to wash their hands constantly. Though, we do sneak to the roof of the hospital parking garage sometimes and scooter down in covert fashion, making the day special and unique.
2) How will she react as she gets older? Will she want nothing to do with cf? Will she join the battle and raise funds and blog about this terrible disease? When she’s a rockstar traveling the country, will she paint “fight CF” on her guitar and hold benefit concerts? Or, when she’s POTUS, will she direct more funds to cf research?
3) How will it affect her choice to have kids? What if her mate is a carrier? My hope is that by that time, cf has been cured.
Perhaps it will be this new army of kids with cf parents who joins the many cfers, hard working volunteers and CF Foundation to finally defeat cf – ending its terrible reign over children and young adults.
Wouldn’t that be beautiful? The ultimate middle finger to this disease. Our children standing with others over the grave of cystic fibrosis.