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.
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.
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.
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:
9 Lives Notes 
Funny, last night I “gave up” and texted her too, and instantly felt so much better. I sent several, but my first was, “I’m going to keep texting you, because you said you like hearing from people even if you can’t respond, and because I can’t not, and because I’m not ready not to see your name at the top of my texts.”
And then I swear she was there, because I started talking to her out loud and said the thing about only beauty having the power to metabolize grief, and mentioning all of the beautiful things she loved and I left out nature! And then it popped into my head and I was like, oh, right NATURE, thank you.
I spent hours today archiving all of our texts for safe keeping, laughing and crying as I went. I miss her so much but I’m realizing our friendship can continue, it’s just different now, but it still is. It’s still here. Just different.
I love this, Shelley. Going to spend a lot of time in nature in the coming weeks. It’s always been my biggest healer. xoxo
I love reading about Caitlin…I feel truly blessed that I walked this earth when she did. I have no doubt that she’s an angel looking over all of us…no doubt at all! Maryann, you aren’t alone…there are so many here on earth that will carry you through this, but that doesn’t mean Caitlin isn’t standing beside you now. That I can feel in my soul. xo
Thank you for your words! And for always sharing the birds with the world. xo
Bless you, bless Caitlin for making such a difference in so many lives. I can’t imagine your grief, but know her message has changed the lives of many… peace.
Love reading and love her artwork. I wake up thinking of her, can’t explain it.
Whatever it is, its sweet, soft like.
I had never heard that Queen song before and when you posted it previously I instantly loved it and downloaded it. It’s heartbreaking and beautiful and so true. I keep listening to it on repeat and thinking of Caitlin and of you. Jillian’s words were so beautiful. Thanks for continuing to share. xoxo
❤
So many of us are still out here thinking of you and feeling sad with you.
Texting Caitlin is the finest idea I’ve ever heard. What a powerful reminder…she is here. She is there. The phone is just out of reach, but she can read the messages.
I’m gutted for you. Grief is physically heavy. It’s something you’re constantly holding, and any little thing that gets put on top makes the weight unbearable.
I knew my mother would die young. I knew it. I thought I was “prepared.” But there is no preparing for the utter shock. I told someone I felt like I knew she had to leave on a train, and I helped her to her seat, and I even got to kiss her goodbye. But when the train started to pull away, I was left banging the glass, desperate for one more moment.
What I learned in the last year and a half is to not look away from grief. Look it straight in the eye and go into it. Open the door wide. (It will pull you in anyway.) It’s a dark hallway of grasping and stumbling, but there is light on the other side. That is Caitlin’s light and peace.
Thanks so much for this, Erika. So beautifully worded. In just this short time, I’ve realized there’s no running from the grief, so yes, looking it straight in the eye—works. ❤
Maryanne, I’ve been checking in here hoping you would post.
I keep thinking about the quiet of the days after a death… of how many different ways there are we cope or don’t…hoping now that the service is over there is some peace in the grief though its so soon.
When my mother died there was nothing – no service – no funeral – no family gathering. She didn’t want anything and my father said he was fine with that. We were together for 3 hours the morning after she died and then we weren’t.
And with Doug’s brother’s death just this September it was much the same but for different reasons. In both cases the right away aloneness was brutal. The deaths were tragic enough but then to be by ourselves so fast…
I’m just glad that you and Nick have so much love around you.
Like Erika, I always knew my mom would die early too. She got sick the first time when I was just 12. After that I was so often scared and worried about her dying… we were so close… similar I think from you and Caitlin from how you talk about her… My mom always knew when I was worried and she’d tell me she wasn’t… that she wasn’t going to to die twice. That if any minute she spent worrying was time living lost. Worry about dying would be one death and then the actually leaving. She lived almost 30 years after that first illness. And at the end reminded me that it had been such a good thing she didn’t spend her life worrying because she would have lost those years.
There is so little we know about what happens to our energy when we die… I’ve been obsessed by the subject since I was twelve… but I know that those we love don’t abandon us any more than we abandon them…I talk to my mom all the time… and sometimes she really talks back… I hear her voice in my heart….
I hope you start to feel Caitlin’s energy around you… that you start to hear her heart beating in yours soon. Because she’s there… as long as love is there.
Thank you… I know how your mom felt, I think. I used to put Caitlin’s CF into a box so we could get on with living. After Nick’s brother died suddenly, at only age 29, Caitlin was then only 5 and I decided then that my motto would be, “I’m not going to ruin today worrying about tomorrow.” I do have a gut belief in the ongoing energy of the soul. The belief helps a little bit now, and will probably continue to help as time passes. ❤
I keep coming back here… to be with you? To be with my tears? I feel almost as if I am mourning my mother and Doug’s brother and everyone I have lost all over again through Caitlin. And maybe even the election. And while that is a sad thing (I’m a crier but haven’t cried as much as I’ve cried since Caitlin went into ICU since my Mom died in 1997) I think it’s a good and powerful thing to share grief with you. And light. And enduring love. And I want to thank you for this space to do that.
Caitlin has gone from inspiring others with her worldly courage and character, to actually becoming part of all of us who have loved her. She is guiding us to be our better selves, as we honor her by living up to the personal standards she has set. Pretty hefty lift for such a small, delicate young woman.
Oh Maryanne. So much beauty here. So much heart stopping beauty. I feel so close to Caitlin thanks to you. Keep writing!! ❤️❤️❤️
Thank you so much for writing. I too have been checking in to read about you and Caitlin. I do not know exactly how it would feel to lose my precious daughter but I do know it would be a sense of loss that would be with me forever. My mother died in 2011 and my lovely dad in 2013. Even though I am 61 and have a beautiful daughter and husband, the loss was unbearable for me as I was very close to them having had a brain tumor as a child and also, my mother was bi-polar and my dad always needed help with her. When my dad died, I just hurt all over and my sadness kept me from living life. In a very real sense, I was waiting to die so I could be with them. I started to know about Caitlin because of the Prouty Garden even though I don’t exactly remember the first time I was there as it was in 1958. I spent a lot of time there over the years I hope very much to continue the fight to create a new garden with the existing space. Anyway, I felt that I came to know Caitlin a little and I finally understood that I must continue to live my life fully and not take the time I have for granted but cherish it instead. Maryanne, I am not quite as eloquent a writer as you but I hope the feelings I am trying to convey are coming through. I hope one of these days to visit the cemetery where Caitlin is. I use to volunteer at Mount Auburn and my wonderful parents are buried there; I know that Edgell Grove Cemetery must be just as beautiful. If you need any help with the Garden for Caitlin’s, I would be most honored to be a part of it. I think I understand how she must of felt when the Dawn Redwood came down. Oh Gosh, I think I have written too much and taken up too much of your time. So, in closing I just wanted you to know that I am indebted to your beautiful daughter who was full of love and light.
Sending you all much love,
Kim
Thank you so much for your notes… never taking up too much time. Thanks, too, for the offer of help when the time comes. ❤
Beautiful! God bless Caitlin, her family and dear friends. Amen.
WOW! WOW! WOW! What a beautiful film
Tribute! 💜 Tears in my eyes mixed with smiles!
What a fantastic way to celebrate Caitlin’s life!
Maryanne, All this love for Caitlin is extraordinary and inspiring. Thank you for sharing her gorgeous light and for being so open and giving.
I second what Jessica said. It feels like you’re transmitting Caitlin’s radiant light through your writing. It’s beautiful.
I have been thinking what to write since I read this yesterday. I have no words to convey the admiration I have for Caitlin, you, Nick, Andrew, dear little Henry, all her friends and relatives. It is impossible. I am going to “tip generously” as someone said of her before she passed and think of her when I do it. I feel like she might have been a distant cousin of mine, twice or three times removed. Peace.
I came across your blog when an acquaintance on Facebook “liked” the entry on Caitlin’s lungs becoming available in mid-December, and when I saw you were being treated by Dr. D’Cunha, with whom I worked tangentially in a previous position, I read the whole thing beginning to present day.
At the time I found the blog I myself was in the hospital with my young child who was undergoing a dangerous surgical procedure for a chronic condition. He has recovered from this latest episode but reading this entry on how you always knew you would likely live longer than your child was something I feel no one else can relate to right now, because he’s currently “better”. It is terrifying and heartbreaking but is what we are facing.
Rambling ahead:
This entry really moved me at a time I needed it. I do not write this comment to make it about me but to hopefully provide a mirror to show one little aspect of the total value you spread with your beautiful writing- not only by sharing Caitlin’s story and the importance of improving the transplant system and supporting hospital gardens, and.. I could go on and on.. but also directly to other families who struggle with “appears ok on the outside, hurting on the inside, trying hard live life to the fullest” situations.
Thank you.
Thank you so much for sharing that. I’m glad you found the words when you most needed to read them. Sending love to you and your child.
God Bless you all! Caitlin touched many beautifully! ❤️