How You Met My Mother

Guest Post Stats:
Name: Kathleen Beatty (aka Piper's mom)
Age: Wouldn't you like to know.
Credentials: Political science professor. 31 years experience as a mom, 28 years bonus as a "CF mom." Primary caretaker (um, make that carePARTNER) in Piper's transplant journey. "Grandma" to Sampson the puppy. All-around superwoman. First time blogger.
Special Talents Include: Treatment enforcer, honorary pharmacist and nurse, CFF advocate.
Hometown: Denver, CO (currently Living in NYC)


Hi. I'm Kathleen Beatty, Piper's mom, and this is my first foray into blog writing. I have to confess being more than a little intimidated by my daughter's prose -- and humor -- but bear with me. I have something to say to the parents among you.

There is something truly surreal about being the parent of a hopeful lung-transplant recipient. I've thought about this a lot. How did I get from Point A -- living with a relatively healthy kid who had a very normal life (if one overlooks the 30+ pills a day, lugging ridiculous pieces of equipment into hotel rooms where neighbors wonder if a plane is taking off in the next room, living in the mist of nebulizers, and starting or disconnecting home IVs in every imaginable place) to Point B -- listening to a charming and funny doctor say things like "IF you make it past the first three months" and then later "IF you make it through the first five years, you WILL eventually experience chronic rejection." How did we arrive at a place where we can sit dry-eyed (most of the time) and hope that someday soon a young surgeon will rip open our child's chest, remove her rotting lungs, and sew in a new pair -- just like that?

I often think back to the milestones we've passed on our way to "end-stage cystic fibrosis" (and really, who decided to call it THAT??). I remember dreading those milestones -- the clubbing, then regular hospitalizations or home IVs, the colonization of dreaded bacteria, the central line, nighttime oxygen, feeding tubes (Piper has actually skipped that one), really frequent home IVs and hospitalizations, the bronchoscopies, CF-related Diabetes (she has so far dodged that bullet, too), osteoporosis or arthritis, and finally -- the monster dread -- the transplant. In each case, my husband and I would say quietly at night: "at least she's not on oxygen," or "at least she doesn't have XXX bacteria (the next dreaded bug)." When Piper was an infant and contracted pneumonia at four weeks, we even whispered, "at least she doesn't have cystic fibrosis" because, in the neighboring room a 5 year old was dying of CF. Only two weeks later we would learn that Piper, too, suffered from the disease.

In those weeks and months after Piper's diagnosis, I fell deeply into grief. Children are supposed to outlive their parents. They are meant to be happy and healthy -- to have "normal lives." I read every gruesome bit of literature I could find about the horrors of CF, and I spent lots of time driving around in my care, crying rivers for my daughter's "normal life."

But the truth is, Piper's actual normal life -- her own personal version -- really was lovely. She was and is so full of life, and she's happy. But of course that didn't mean that didn't mean that there weren't more milestones in our future.

A day came when the doctors we knew so well said "Piper is colonizing pseudomonas and needs to be hospitalized" or "Piper will need oxygen at night to avoid damaging her heart and to improve her sleep" and we would pack up our bags, go to that hospital, and watch for improvement, or we went to pick up the oxygen canisters and concentrators. And, while one little voice wants to say "no, it's not time yet -- not for my child," another part of us knows that it is time and that we have passed yet another milestone. And, somehow, we (as CF parents) not only find the strength to keep going, but to welcome the physical relief that new treatments may bring to our very normal kids.

This all builds up to transplant, the most dreaded of the dreaded it seems. Piper had described in her blog her feelings when her doctor explained that she was referring her for a transplant evaluation. I was there. I don't think either of us said one word on the way home from the appointment. No, it can't be time. She just finished law school. She's working at a major firm. She has big ideas about life. We can't be facing a lung transplant.

Since that day, we have looked at CT scans that show petrified swiss cheese where the lungs should be. We've had sleepless nights filled with more coughing than I thought possible (and for the parents of a CFer, that's saying a lot!). We've done treatments at 3 AM, 7 AM, midnight. She has coughed up unbelievable quantities of mucus, had terrible reactions to drugs, experienced chronic and frequent lung infections, and even lung collapses. We've even been to New York City emergency rooms -- not a happy experience. Through it all, though, Piper continues to live a perfectly normal life (her kind of normal and, yes, our kind of normal too).

Something else has happened. A calm has settled over our Manhattan apartment. (Piper, however, would not agree that I or the rest of the family is "calm." During one of our "dry runs" the doctors informed her she should try to be at the hospital within a half hour, and I ignored my checklist and jumped straight into a nice hot shower. My husband continued his exercise class. My older daughter invited a friend over to calm her nerves. Piper was left fielding phones calls and wondering what in the heck happened to her well-organized support team -- needless to say she's whipped us all into shape since then.) But somehow we (and I mean all of us here, including you) know that we will find the strength to think a shiny new pair of lungs will be a great thing for our kids, when that time comes. We get better every day at living in the moment and at trusting that, as my husband said recently, "we don't know what will happen, but we do know that there will be a happy ending. That's our choice."