Tag Archives: cystic fibrosis

JANUARY 1–Everybody Sees the Wind Blow

I have been sending Caitlin text messages:

I love you.

Where are you?

I love you.

Before that, when she was mostly unconscious in the ICU, I would write, I miss you, bud. So many things I go to tell you, just dumb things, like Pup. Puppetypuppup. I’m sending these now for us to laugh at later.

Caitin’s name was always at the top of my iMessage window. It seems weird to have to scroll down, down, down to find her. When I look backward through our exchanges, I see that one of her last real ones to me was after she sent her last text for me to post, on December 3.

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This person who thought it might be awful to beg for people to pray for her….How did she come to be such an angel?

When you have a sick child, as we did for 31 years, you know you may someday have to face the loss of that child. Your mind sometimes peers at ‘the worst,’ and although you quickly slam the door, painful stuff seeps in through the cracks.

I always knew I would likely outlive Caitlin. And always knew, on one level, that Queen’s “These are the days of our lives” would be a part of a film tribute that my brother Michael would eventually create in her honor. I could never really listen to that song, though I loved it. Still, for all the bracing I had done all her life, I always had faith we had more time. So it was numbing and heavy to plan a service and create a program for that service—something that had to be real and special and unique. To choose the music and photos for Michael’s film tribute.

As I said in an earlier post, Caitlin wanted a mausoleum. Who, these days, wants a mausoleum? And who knew that just three miles from our home was a gorgeous little garden cemetery, built in the 1800s and modeled after Mt. Auburn Cemetery, that offered a mausoleum and gorgeous chapel? We never knew it was there, but it was/is so perfect it could have been built to Caitlin’s specifications.

She liked cemeteries, found them peaceful. When she was at BC, she would often go to the beautiful Newton Cemetery to study and read. “I visited my friends today,” she would joke.

My brother Michael has long created what we all jokingly, in our family, call “tearjerkers,” films that capture family, friends, lost days. This was his hardest tearjerker yet, he said. He could hardly look at the photos while making it (and my goodness, he put it together in a flash). Uncle Mike and Caitlin shared a special bond, always, but especially in the past two years when he had helped out, so much, with her Prouty Garden fight.

The service on Friday was all Caitlin, exactly as she would have wished. Emotional, personal, beautiful. The chapel was stunning, with its soaring, painted ceiling and exquisite stained glass windows. Large portraits, printed by her special buddy Billy Duffey, graced the walls.

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The early Christian art lover in Caitlin loved this service, I know. St. Kitten.

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The space looked like a sacred art gallery. We read poetry in unison. Gary Richardson played slow-tempo acoustical guitar pieces, including a version of Silent Night that he arranged just for her. Many of her close friends spoke, and as they spoke, they all stood so exceptionally strong and tall—-heartbroken even as they summoned the courage to be articulate and passionate. They inspired all of us, especially me, as they spoke to Caitlin’s depth of character. Such wonderful people. As Nick always said, “To meet a friend of Caitlin’s is to meet Caitlin.” Her cousin Jillian spoke for everyone when she said:

When I think of Caitlin’s incredible spirit, there is one particular story that is so deeply ingrained in my memory that it positively shoots to the forefront of my mind’s eye and takes the stage. During visits with my Oma, Brigitte Kelsey, throughout my life, she would always make a point to inquire about my cousin, Caitlin. How is your cousin Caitlin? She would ask. Admittedly, I disliked when most people would ask me this question. The air of pity bothered me, something about it sounded like they were making Caitlin out to be a victim; it felt dooming. I would generally answer in as positive a light as possible. “She’s doing really well”, or “she’s had a tough year but she’s getting much better”, or the fast and deflective “she’s doing well, how are you?” These were my go-to responses to most other people. But my Oma was different. She’d lived through the war, she’d had everything taken from her and she had lived on. Her voice didn’t carry the sound of pity, but of honor. She honored Caitlin. I always answered her honestly, and I always knew that following my answer would come the same tried and true story that would over the years, and dozens of re-tellings firmly assert a particular image of Caitlin in my mind. “I always remember”, she would say, “that day of your baptism. She was running through the church, screaming and laughing and causing a ruckus. She was a wild child. I always liked her.”

Something inside Caitlin just positively glowed.  And it’s that glow that I want to talk about. I want to talk about that wild spirit, that bearer of light… that lion-hearted woman, the Leo that she was. It seems to me that Caitlin came into this world as a great bearer of light. And it also seems to me that her light grew as her health struggles grew. And it seems that her light is now stronger than ever, because it’s filling this room.To me, Caitlin more than any other person that I’ve known, inspires me to live life to the fullest. From the day she was born, supposedly, her breaths were numbered. Her diagnosis at two years old let her parents know that her breaths may be numbered. And it seems to me that she made sure that every breath she took was lived as fully as possible.

This is a woman who traveled extensively despite her illness, who brought into her life the kind of deep and loving friendships that have the mark of soul-relationships, who spent her last several years with this incredible man who loved her so deeply and fully, who supported her on her highest path, in her utmost truth. And so, I feel like the gift that Caitlin has brought to us all is the reminder, and even the urging, to live life fully, to not waste a single breath. And if we do waste breath, to not waste more in mourning it, but to forgive ourselves, to forgive others. Kindness and compassion, truth and love, these are what she brought to us as our friend, cousin, niece, daughter and partner.

33 years is just a wrinkle in time, and yet 33 years, if every moment is infinite, is different. When you really think about the depth and fullness of a moment shared in a kiss or a cuddle, in the taste of fresh fruit in the summertime, in the stillness and calm of a rainy day spent watching out the window, or the long hours sitting beside someone you love in a hospital bed… when you think about feeling compassion for another human… none of those moments are contained by time. They are fluid and vague and full and they are what life is all about. And so, Caitlin had 33 years in this life. Maybe some of us have 80, or 50 years, maybe some of us have less, or more than we think. But it doesn’t really matter when you are living life to its fullest. If every moment is infinite. And if you live the way you truly want to live: courageously, with an open heart, focused on compassion and love, generosity… when you invite only positive loving relationships into your life… when you invite in only the experiences that hold you in your essence… then maybe 33 years could be enough, if they have to be.

I trust that Caitlin is on her highest healing path and I trust that she is there watching all of us, saying “please laugh at least as much as you cry.” Life is too good to waste a single breath.

My understanding from conversations I’ve had with Caitlin and also with Maryanne, is that Caitlin was very spiritual, but did not ascribe to any religion. She was more pantheistic. Similarly to how she loved us, she saw and loved the best and what was good, in all religions. I understand that she had always felt an affinity for the Virgin Mary, and I have been asked to lead everyone in a recitation of the Hail Mary prayer in honor of her special connection with the great Mother. As we recite this prayer together now, I invite you to be present with the words as we would be in the reading of a poem, to reflect on the spirit of Mary.

You may click here for the PDF of the service program:    Caitlin’s Service Program

And you may click here for Uncle Mike’s live-stream of the service, the recording of which is still available on Facebook:

At the end of the service, Uncle Mike’s film tribute plays for 9 minutes. You can also view it on YouTube: Film tribute  

Back at our house, on Friday evening, we lit our traditional holiday barrel full of firewood out on the patio. We burned sparklers and raised them and looked up at the sky. There were a lot of shooting stars that night: quick flashes among the old familiars that calm humans with their always-presence: Castor and Pollux. Orion.IMG_0748.JPG

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We have received so many messages from old friends, new friends, and perfect (wonderful) strangers. We are so grateful for every word. One particular message, from an old high school friend of Caitlin’s, particularly struck me. He articulated so well what so many people have said about our amazing Caitlin. I have his permission to quote his words here:

Maryanne, I hope you don’t find it forward of me to reach out during such a time of mourning. I read the Herald piece and could strongly relate to your sentiment, “Every friend of hers considered Caitlin his or her best friend.”
Caitlin was always there for me and will always occupy a special place in my heart. Because she was so kind, caring and strong and it made it all too difficult to overlook just how much she had to grapple with. It is humbling and awe-inspiring to read your accounts of how much she quietly struggled and persevered time and time again.
Caitlin touched my life as she did so many others. Her willingness to put others’ need above her own, her caring nature is something I had the benefit of experiencing. In very trying times, she was there for me in a way that no one else would or could be. It is hard to put into words just how much that means. It is clear from the accounts of many others that I was not unique in this regard. What a wonderful gift for all who knew her.
Thank you for raising such a wonderful person. I will carry Caitlin in my heart always. She was a true friend. As you wrote, “All loves are ill-starred, because all are made of time.”
Caitlin was a wise, old soul. Her decency showed a worldliness beyond her years. She had a taste for joy and understanding of suffering. There was an undeniable soulfulness to her, the kind of depth that almost serves as proof of higher beings and callings. Such qualities cannot be measured in time.
We may have met only once or twice while Caitlin and I were at Saint Mark’s, but you are in my thoughts and prayers. Another being touched by your daughter and mourning her deeply.
-Alex Fekula

Thank you, Alex. And everyone who has reached out.

We are now into a new year. 2017. Our first without Caitlin, in three decades. We are sick with grief and I can attest that true grief is a sickness unlike any other. Everybody sees you’re blown apart/Everybody sees the wind blow, sang Paul Simon. But—-but—-but—-the love and comfort of our family and friends has been a wonderful thing. You would think that the holidays would be the worse time to lose a person, but the timing all turned out to be a strange kind of blessing, because everyone was able to be around for so long. We are two weeks into this now, and we have never been alone, will never be alone. Thank you.

🙏

–Maryanne

PS:

Caitlin was shamelessly sentimental about animals and people in need. She couldn’t pass a homeless person without digging in her purse. She always contributed to good causes with no reservations. Here are two charities she fully supported which you may also consider supporting in her honor:

prisonbookprogram.org

gentlebarn.org

JULY 14–The Unthinkable Transplant, (Linked essay by Caitlin)

Caitlin & Andrew in 2013 Looking Good/Feeling Bad

In 2013: Looking Good. Feeling Bad

In this column for the Cystic Fibrosis Lifestyle Foundation, Caitlin talks about how the word “transplant” always terrified her.

It terrified me, too.

But that’s for another day. Right now, at 8:47pm on Monday, July 13, as I write this, there’s a rainbow over Pittsburgh, and Caitlin’s on the balcony with it.

Read the entirety of her thoughts here: The Unthinkable Transplant

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-Maryanne

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APRIL 24–“The timeless, repetitive waiting.”

michener(1)Well, today marks one year on the transplant list. On April 24, 2014, Caitlin wrote a blog post about what was ahead. And what was ahead has turned out to be a very long wait.

I was telling a friend that it reminds me of the beautiful show and Pulitzer Prize-winning book, (TALES OF THE) SOUTH PACIFIC. During WWII, a group of servicemen and women in the South Pacific wait to be called to war. The pace is languid, with many beautiful moments. Then, when the waiting period has begun to feel eternal—BAM!—the fighting starts, the planes take off. Everyone goes into action, the languid days over forever.

We’ve had some lovely days that we will probably, in some future time, look back upon with longing. But right now, Caitlin is uncomfortable; everything is a struggle for her. So we are ready, and hoping.

–Maryanne

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APRIL 1–Lots of “Months”

Photo: Justin Posey

Photo: Justin Posey

My lighter side loves April Fool’s Day. My literary side loves National Poetry Month. But our beautiful Caitlin has been waiting almost a year for a lung transplant, and what’s most on my mind is that April is also Donor Awareness Month. So click on the photo for a poem that rethinks the way we think about organ donation.

I’ve been a registered donor since age 16–here’s a link to your state’s registry if you’d like to register, too.  http://www.organdonor.gov/becomingdonor/stateregistries.html

–Maryanne

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MARCH 15–Winter to Spring

By Stephanie Danforth

Art by Stephanie Danforth

Today marks three months here, but this beautiful painting, which our wonderful friend, Stephanie Danforth, recently painted and sent to Caitlin, reminds us that spring is imminent, and that every day spent waiting means one fewer day to wait.

PS: If you want to follow this blog, just click +Follow, down to the right, and enter your email address to be alerted to updates.

–Maryanne

JUNE 29 – A Few Clarifications

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* The other day, I posted a #ThrowbackThursday photo of Nick and me on St. John. A few people didn’t notice the Hashtag-Throwback part.  Nick and I are most definitely not on St. John.

* We can’t venture from our home base in Boston. When Caitlin gets called, we have four hours to get to Pittsburgh. This will involve contacting the list of medical jet services that we have pre-arranged. Since no single service can sit around and guarantee that a jet will be available when we call, we have to hope that one of the services on our list will be able to get to us within the allotted time.

* Once we are in Pittsburgh, if all goes well, we will be there for two to three months. (You  can’t go home until you are definitely stable. And then, for the first year, she will go back to Pittsburgh for evaluations every two months.)

* You know how once you get used to something, it starts to feel normal? Well, that’s us. We are not as somber, sad, or serious as people imagine. On the contrary, almost every day has a ridiculous amount of humor in it. One of our latest pastimes is taking videos of the way Henry reacts to the word LUNCH.

* When people who haven’t seen Caitlin lately do see her, they inevitably remark on how great she looks. Now that she’s not acutely ill, she does look a lot like normal Caitlin. That’s the irony of CF, though. Unlike some diseases, the effects are mostly invisible. For more information on CF, check out http://www.cff.org.

* Caitlin has done a few needle felting sculpture projects–quite out of the blue–and she is rather good at creating the most charming little creatures! (Needle felting is the process of sculpting/interlocking wool fibers by stabbing the wool with a barbed needle.)  

* Happy July, everybody.  Summer! Boston is not a bad place to spend the summer, and it’s not as stifling as St. John in July.

–Maryanne

March 12: Home to Wait

So Caitlin is accepted as a Tx candidate, and there is relief in that. She doesn’t have a “number” yet; there are still a couple of minor tests to do which affect the number, and in any case, the number is really “just a number.” If lungs become available that are just right for you, and the circumstances are right, you get them. It’s all fate, chance, luck, divine intervention—whatever you want to call it.

The good news is she’s stable enough, at the moment, to wait at home in Boston, so she and I and Andrew, who’s been unbelievably caring and supportive, are heading out today. She will be discharged on IV meds and oxygen, and I rented a large, comfortable SUV for us. Commercial flying still feels a bit too risky (virus season/stress). This is so welcome, because when we left Boston on the medical jet last week, we had no idea what was ahead, and did worry that we would have to stay on in Pittsburgh indefinitely. We may end up waiting back here at some point, but for now, we are taking it one day at a time.

She actually feels okay and looks like normal Caitlin ! fyi

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