Friday, March 12, 2010

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."


  1. I know where Piper gets her gift for writing. You also have the ability to clearly convey your feelings. As a fellow CF mom I thank you from the bottom of my heart! The insights you both share are priceless.

  2. Ye I second what Julie said! You write just as well as Piper does!!!!

    I am passing this on to my mom so she can read it :) I hope I get to meet you one day. I adore your daughter :)

  3. What an awesome blog :) I had my very first 'CF panic attack' over RSV Wednesday. RSV?! Small potatoes when you consider what you've been through as Piper's Mom. I only hope that I can find my strength, as you have found yours, and be just as strong as you are, when each time arrives for a CF milestone in my daughter's life.

    Thanks again for sharing this. I really did take a lot from it.

  4. Wow, Kathleen, you look great and what a wonderful first blog. You are in my thoughts and prayers daily. Wish I could come hold your hand or fix you a wonderful meal. Thanks for taking care of Ann and Jordan when they visited.
    Love, Judy

  5. Thank you, Kathleen, from one CF mom to another.

    Your daughter's contribution to has been very meaningful to me, and now I see where she gets her gift for words. She has been blessed with an amazing mom.

    ~harriett (hmw-

  6. Thank you Kathleen! What a wonderful blog post from one CF mom to another. I am two years into Lucy's CF journey and I have also begun to think of this CF-life we lead as "normal" and I just try to roll with the punches, as does Lucy. I try create this wonderful normalcy and excitement around CF, trying hard not to make it the focal point of our lives, but the reality of CF is ours. It is there everyday. A lot could be learned by your journey as a CF mother and caretaker, from point A to point B. If you just so happened to have your own blog someday, know that I would be a fan! Thanks for your guest appearance on Piper's blog and for your experienced insight. You are valuable in this community and I hope to see more of your writings in the near future!
    Hugs from California,
    Kacie (AKA Lucy's Mom)

  7. Welcome to the blog world Kathleen! What a wonderful post! I am going to send the link to my mom, who was my "primary care partner" also! She will enjoy reading it. THANKS!

  8. Thank you Kathleen. Your perspective gives me strength to endure any more of the milestones that may, or may not, be thrown at us. So we wait, while we do everything we can to have our say in the outcome. Best wishes to you and Piper on this latest journey.

  9. Kathleen,
    Thank you so much for your post. My beautiful 17-year-old daughter has been told she needs a transplant and we are in the midst of the evaluation process. Much of the time, I feel as if I am groping in the dark. But, knowing that others are out there believing in a happy ending somehow helps me believe I can do this too. Thanks, again... And, Piper... Thanks for lending your mom the space. {{Hugs to both of you-- Donned with gloves, gowns and masks, of course...}}

  10. What a lovely post. I think I will pass it on to my own parents to have a read. :)

  11. I also want to thank you. I would also be a fan if you started your own blog. Piper is very blessed to have such great parents.I love reading about anything Piper write's about. She has the gift of grace.
    Much love,Karla

  12. Hi Kathleen, thank you for writing that. We have already passed many of the milestones you wrote about and my daughter is only 9. We are currently looking at a resection..I can only imagine the what you all have been through.
    Thanks again for writing this. Piper is blessed.

  13. So glad to meet you, mother! Behind every good CF'er there's a Mom who tries to make your life as normal as possible...while taking extra good care of you when you're not looking. CF moms can be sneaky! You helped me to remember my blessing--my mother.

  14. Kathleen

    I too enjoyed your blog. I am the mom of a 3 year old with CF and oftentimes feel that no one except other CF moms understand. I so identify with the part about hotel rooms, we have had the desk called on us more than once while doing the vest. Blessings to you and Piper.


  15. Beautifully written... made me tear up a bit, I think most cfers know how hard our moms work to help us :) Maybe that is why everyone I have dated has said I feel like I am dating 2/3 of you. 2 being me and my mom. 3 being me, my mom, my puppy :) Oh well package deal right.

  16. I don't have to tell you what a wonderful daughter you have, but I will. Piper is an outstanding example to us all. She has shown us how to accept life, and live it with grace & dignity.

    I'm grateful to her for sharing her perspective of life with CF. Thank you for sharing yours as well.


  17. Thank you Kathleen. I'm only a few years into this journey and my daughter is only four, and yet I think I understand so much of what you are saying. I totally get that despite the meds and the hospital stays (and the feeding tube we already deal with), etc. our girls are normal, wonderful, beautiful... Normal is what you have, what you get used to. You can grieve the lack of normal for awhile, but ultimately you accept where you are and you seek it to become the best where-you-are that you can have.

    I hope YOU have a support system in place for when Piper gets her beautiful gift of a new pair of lungs. I have a feeling that the newest journey will be just as tough on you as well.

    Thank you for your writing. You and Piper share a skill in eloquence.

  18. Thank you for sharing with us
    Kathleen. This truly is our normal. I have a 17 yr old daughter with CF. Never thought to think of CF as milestones. It makes sense. You have one amazing daughter. I hope you write more.

    Cheryl (CF.COM)

  19. Great title line, and as others have said wonderful writing style. You raised a great daughter (I'm sure you hear that all the time), her strength and wilingness to share her experiances is a huge help to people like myself.

    You should be very proud!

  20. I loved this! We CF mom's do have a connection, I feel it so often when I read blogs and posts on

    I, too, would read if you started your own blog!

    I've long looked to Piper for inspiration and hope that my Emily can some day live out her dreams (she's shaping up to be a good little debator at age 4...maybe she'll follow Piper into law!).

    Thanks for sharing your thoughts!

  21. Hi Kathleen,
    Just like Piper's, what a beautiful and inspiring blog post. I loved reading it, thanks!
    Jennifer Fierro

  22. Fabulous post, though not surprising - Piper obviously gets her gift honestly! She looks a lot like you, too - also a compliment :o) As a young-20-something with CF and similar interests, I look up to your daughter more than I think she knows. Kudos on raising such an intelligent, engaged, tenacious and eloquent young woman!

    Thanks for sharing your perspective. My parents read Piper's blog from time to time, but I'll be sure to have them read this post, as well. Please know what a gift you are giving your daughter in the delicate balance of your *collaborative*, honest-but-optimistic support. I have been blessed with the same from my parents and am only now beginning to learn what a rare and precious asset it is.

    P.S. I see that you are a Political Science professor, which just gives you that many more cool points in my book. :o)

  23. Thank you for sharing your thoughts with us. I enjoyoed reading your entry. Ienjoyed meeting you at the event at Artisan Food Store a month ago. My husband and I are traveling in Greece & Turkey now. Got to do it before the decline. I feel like I'm on a bit of a race. Lauren

  24. Hi Piper's Mom. Thanks for the blog entry. I only "met" Piper recently as my CF wasn't diagnosed until I was in my 40s. I'm glad that she has you and her family rallying around her to help her through this next stage of CF. Piper is an amazing positive role model for all of us! And clearly she gets some of that strength from you. {{{hugs}}} to you all. ~Juliet

  25. Wow. How nicely said. I am a parent of a 1 year old diagnosed with CF and I cried through it all. You all have such strength!
    Best wishes and health of all of you!