Charlie, Lola & Henry my three greatest works in progress
Two little letters that stir up a swirling tornado of emotions inside the hollows of my soul. On one hand I love those letters, the initials of my firstborn. Charles Francis. Two family names borrowed from generations past. I read his name, let it roll from my tongue and I think how could he not end up a writer with a name like Charles Francis?
Yet his name, so strong, has an irony of its own. Charles Francis. CF. Cystic Fibrosis. Fate has a way of picking you up and flipping you on your ass when you least expect it now, doesn't it?
Lola, or Dora (as in the Explorer) as she likes to be called now, was diagnosed first via the newborn screen. I write about the call that changed our lives forever here. Her older brother, Charlie, had somehow sailed through this screening test likely due in part to the blood transfusion he received in the NICU upon his arrival 10 weeks prematurely. Multiple inconclusive sweat tests and two vials of blood later we would learn that both of our children had cystic fibrosis. In the lottery of genetic diseases, we had managed to hit the jackpot not once, but twice. A genetic test later confirmed that both Charlie and his little sister carry not two, but 4 mutations which we were told was not at all commonplace. Each child carries one copy of the Delta F508 mutation on one chromosome. The 3-pack smorgasboard of R74W, V201M and D1270N ride alongside separately, sitting pretty on the other chromosome.
Fast forward a couple of years post diagnosis and here we are, going full throttle into 2011. We have a new addition to our tribe, Henry, who just happens to be the best baby in the universe. Seriously, he is. Typically a third child, he eats off of the floor, gets his face cleaned by the dog and happens to carry just one mutation (the Delta F508) making him a "carrier" in the world of CF. I write about, though not nearly enough as is the case with the third, my most perfect baby boy here.
We are living, laughing, screaming, playing, sharing, caring and yes...breathing. All in the face of cystic fibrosis. And we're doing it one way, our way, the only way we know how...