Word is getting out, so I will speak. After my light-hearted update yesterday, everything spiraled out of control. After an early morning EEG which showed slowed brain activity, morning rounds showed that she had no responses at all. Her left leg had no blood flow below the knee, contributing to her worsening condition, and they had to remove it. Then a CT scan showed a massive brain bleed, the one thing she had always been terrified of. There was no hope.
The lung allocation system is so broken, friends. If she had received these perfect lungs earlier, all would be different. She should never have ended up on life support with the score she had. All the allocation systems are different, for each organ. Liver is the only one that works—at a certain score, need overrides all regional allocation.
Her doctors were in awe of her—that her tiny body endured so much and kept going.
Yesterday, Sinead experienced a reading of Caitlin that was urgent and stunning and accurate, as all of her readings are. She spoke to the surgeon, on his way into the operating room, and he listened.
The wisest doctors know that this life is mysterious, and that they don’t have all the answers. The care she received at UPMC was loving and extraordinary. We are grateful.
We numbly stumbled through these last weeks, but looking back now, I realize with horror all she had to endure. She was terrified when she was put on ECMO: essentially locked-in, immobile. For the first two days, she could speak, but got so agitated she had to be intubated and sedated and then she was in and out of consciousness.
And before that? The last two and a half years, every day was a wake-up-and-do-it-all-over-again effort to stay healthy enough to survive the transplant surgery: force down so many calories in an effort to maintain her 97 pounds, lengthy breathing treatments, chest PT, exercise.
All the while, she tried to “have a life.” She was teaching herself guitar until she could no longer sit up and hold it properly. She worked tirelessly, from afar, to help create and run the Friends of the Prouty Garden; an advocacy group for Boston Children’s Hospital’s world-famous healing garden. The group, despite massive outreach and supportive press, ultimately failed to save the garden. The day the 65-foot Dawn Redwood was cut down was the day she finally crashed and ended up on ECMO. I know that seeing that tree killed killed something inside her.
Nick is broken and strong at once. She was so lucky to have such a giving father.
Andrew—-never was anyone so devoted to someone. Caitlin loved him with all her heart.
Jess flew in like the wind last week, like the angel she is, after having her chemo in San Francisco. She had to fly back for her experimental cancer drug yesterday and so was not here for the end. She will join us in Boston tomorrow.
To all of our family and her closest friends: She loved you all so so much! She was having an argument with me about something once, not long ago, and she said, “You think all this is important but all that really matters is loving people and being kind.”
We are going to go home and figure out what kind of service to have.
She did not want to be buried. She did not want to be cremated. She wanted a mausoleum and we are arranging that. I know she wants a service where everyone can have a good cry and a couple of laughs. We will figure it all out and I guess I will post details here.
Caitlin and I do believe that the soul lives on. I know she is out there, but I will just miss her so much! She is my soul friend. She is my person. I really don’t know how I will live without her. When she was very sick twenty years ago, I remember thinking, “If she dies, I’ll kill myself.” I know I won’t do that, but this gaping hole is never going to close, I know.
We do have weird things happen with “pennies from heaven,” and last night, as they turned off the ECMO machine, I saw there was a penny on it. Birds, always a motif in Caitlin’s life, were doing all kinds of strange things this week. I wanted to read them as signs she would be okay, but I feared they were signs that she was going off into the light.
Sinead sent me this message this morning:
Caitlin Elizabeth O’Hara
July 31, 1983—-December 20, 2016
Today is apparently the darkest night in 500 years. The solstice and an eclipse. Please look at some form of light today and remember Caitlin and the light she carried within her all her life. Share that light. Please keep Caitlin’s light alive.
She loved Freddie Mercury. And loved his cat vest. And this song, which always breaks my heart.
9 Lives Notes 
My Thoughts and Prayers are with you all on this heroic fight
Maryanne, Nick, Andrew, Jess, all of Caitlin’s friends and family: I am so very sorry for your loss. You did everything you could and more. Her light will continue to be felt far and wide. We all loved her and we all love you. You brought light into the world for us all!
Maryanne, I am so sorry. I send my deepest condolences to you and all of Caitlin’s dearest ones. I cannot imagine the heartbreak you are feeling right now. But like you, I believe that Caitlin will be lighting up the sky, and also sitting on your shoulder from this day forward. She is free at last from the constraints of her body. She can fly. Please be gentle with yourself.
Love, Kate
I am so so so sorry to hear this. What an amazing lady she was and what an amazing angel she is. Sending you lots of love and know that she is with you always. Xxoo
I am so sorry, Maryanne.
There are no words to express my sorrow for you and the loss of your precious Caitlin. My son went to school with her at Fay. I was following her with prayers … and sometimes there is no justice. She was a fighter. A brave and kind soul. May she rest in peace and may you find some peace in knowing that you were the best friend and Mother any child could ever have.
I am devastated. Can’t stop crying. I am so terribly sorry for your loss, Maryanne and Nick, and Andrew and Jess. I can’t help but feel incredibly grateful that I got to know her at all.
Maryanne and Nick, there are no words to accurately convey how heavy our hearts are. Thank goodness for Sinead’s message which gives us hope. And, thank you for sharing so intimately in this time of deepest sorrow. Our candle burns brightly for the being she was. With so much love…
The Weden family is extremely sorry to hear this news, we have been invested in Caitlin’s journey and followed it daily. We must understand that your lovely daughter is now in a better place. And, she left the world better than she found it. Through your journey, we have deep appreciation for Caitlin’s strength, she was a force of nature. And the O’Hara family has made a huge impression on the rest of us to participate as organ donors, and work hard to improve the allocation system. We wish you peace and love at this painful time.
I am so saddened to hear this news. Caitlin’s life has touch the lives of so many and her light will carry on forever. Sending love and strength to you and your loved ones.
There are simply no words….maybe later the words will come……
Caitlin is an inspiration. I am so sorry for your loss. Prayers for everyone.
Maryanne and Nick, life beyond the body goes on forever and you will be with her again. We go on at different times and some go on far far too young and the others must wait behind in their pain. When my husband died, I felt his spirit above my head in the room saying, “But I am not there now, I’m here…look up.” I send you and your family all my love and my deepest, heartfelt, tearful condolences as well as my assurance that only her body is gone and the rest of her is very well indeed and with you. love, Stephanie
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I don’t know you, I don’t know your family, and I didn’t know Caitlin… but I am from Ashland and have been religiously reading your blog and updates since I heard word of Caitlin’s struggle to find new lungs. I want you to know how heartbroken I was for you and Caitlin’s loved ones after reading this final update, and how sorry I am for your loss. It seemed like Caitlin was a remarkable woman who endured almost a lifetime of pain and suffering that no one should ever have to endure. She clearly fought one heck of a strong fight, and she was clearly loved by a LOT of people. I can’t even imagine the sadness you are feeling right now, but please try to find a sliver of peace in knowing that she is no longer in pain or suffering (even though it means that now YOU are the one who is in pain and suffers). You and your family are in my thoughts. May Caitlin rest in peace, and may her heart and soul forever remain a part of yours.
I do not know you, but I feel your pain. May God sustain you through what you must endure. I believe that now Caitlin is well and happy. 💗
I have no words. Only tears falling in honor of your Caitlin. I’m inspired by her and the journey she was on that I only learned about the last few weeks. I adore the words she spoke to you and also adore the words from Sinead – she will be with you forever. And also with me through your sharing. Thank you for that. She is resting peacefully and breathing deeply. My sincere condolences to you and all who loved her.
She is the light and will shine as an angel just as she did during her short life. I’m so angry that the system for organ donation is so broken. This should not have happened. My heart goes out to Caitlin and all of you.
We are so very sorry. How odd that there was an owl on our deck rail on Monday. It flew off as I raised the camera and I captured only a blur flying off. Tim wondered out loud how Caitlin was doing last evening and our scale was stuck at 95lbs (far cry) for each of us. With your bond, I know that you will feel her presence as I do my mother. Your will continue to find many signs and she will be your angel. Our thoughts and continued prayers are with you.
My heart goes out to all of you…Maryanne, Nick & Andrew! I considerate it a privilege to have gotten to know Caitlin and all of you. It is something that will stay with me forever. Caitlin was the epitome of courage and positivity! Thank you for allowing me to be a part of your life here in Pittsburgh. You are amazing people and you will ALL be missed.
Thinking of you all. The care and support that has been offered up to you all throughout this journey still surround you even if you are too numb right now to feel it.
William Saroyan may have words of comfort as my words fail me:
I’m not going to try to comfort you; I know I couldn’t. But try to remember that a good person can never die. You will see her many times. You will see her in the streets. You will see her in the houses, in all the places of the town. In the vineyards and orchards, in the rivers and clouds, in all the things here that make this a world for us to live in. You will feel her in all things that are here out of love, and for love – all the things that are abundant, all the things that grow. The person may leave – or be taken away – but the best part of a good person stays. It stays forever. Love is immortal and makes all things immortal.
Tears, love and light.
I remain in awe of Caitlin, of you, of all your family and her dearest friends. Sending love with much gratitude for the stunning life she showed us all. –Christine
Maryanne and family, I am so sorry for the loss of your beautiful Caitlin. I pray that you find comfort in knowing she is at peace and no longer suffering, she has a perfect body now.
With love and continued prayers,
Allyson
Caitlin! Your name will be forever synonymous with Hope for our family. We saw your light, and we promise to shine your light. For now we continue to pray for your family. We love you, Caitlin, and we are sorry. Love, Jennie and Mike Burke and kids, your friends in Baltimore
It is hard to write through the tears but I am so deeply sorry to hear this news. I know it is terrible for you to loss your sweet Caitlin. I had a feeling that this was the news today and somehow I connected it to the feeling I had about the loss of the Dawn Redwood and what that must of meant to Caitlin. I believe we go on somehow when death comes and Caitlin will always be with you. When my dad died, I read a poem at his Service called “Auf Weidersehn” which means to see again. You will see Caitlin again.
Love and Light. And More Love and More Light.
I am so very sorry for your loss. She was such a lovely person and will be greatly missed. My condolences to you and your family.
So sorry for your devastating loss! What an amazing family you have. You were blessed to have her but she was blessed to have you too. Hugs, Val (Bobbi’s daughter)
Maryanne and all, I’m so sorry. Like so many others, I was holding and sending so much hope during this past month. I’m heartsick at your loss and at all you’ve been through, including Caitlin. You will continue to be in my tenderest thoughts. May you feel her around you, now and always.
Sending my deepest, heartfelt sympathies to all who loved and knew her. If there is a memorial established, I would like to know how to contribute. I knew Caitlin through her Aunt Cathy’s stories about her tremendous spirit. Loved the Queen song at the end. Thank you for your strength in posting this. I am so sorry.
Oh, Maryanne. I am so terribly sorry.
I am a friend of Jenny Field’s in Nashville. So many of us have been following your journey and hoping for a different ending. You write that “the gaping hole will never close,” and I suspect you are right. My experience, as one who has a couple of gaping holes from terrible past loss, was that the holes in my heart allowed other new and wonderful things to enter. I pray that you receive the same gift, and I will be thinking of you often.
My deepest sympathy to you, Nick and all of Caitlin’s family and friends who are grieving right now. I will continue to pray for you all. ❤️
I just recently starred following Caitlin’s journey. Your strength as a family is amazing and inspiring, and please know how much everyone is thinking of you. My family has had two unexpected deaths this year, and I’ve learned something tremendous from that: you will feel moments of almost ecstatic grief- where your heart will be so filled with love and appreciation for the person you knew,, so overwhelming it radiates through your body like sunlight. I wish your family the best as you go on.
I just read this sorrowful beautiful post out loud to Doug, sobbing, not always able to speak. We cannot even begin to imagine your sorrow.Doug interrupted my reading yelling several times about the “fucking system” and it is terrible and it is broken. We are in awe of you and Nick and Caitlin and Andrew and Jess and send all our love.
Maryanne and Nick,
Your strength has been remarkable. We are very heartbroken to hear the news. But I to believe the souls live on and that loved ones stay connected forever. Caitlin is in your heart now and I believe you will be together again in the future. She is such a beautiful person. Kathy and john.
Our whole family has followed your heroic, loving efforts. We are strangers from far away who are standing with you in your grief. We’ll hold you and Caitlin in our hearts forever.
You are so deeply in my prayers.
Love, Lynn
My heart breaks for you and your family. We lost our son after he battled cancer for 17 years…….all while trying to live life and keeping all those around him smiling. It has been 5 years and yet it feels like yesterday. As much as it still hurts, I still feel that I was so blessed to have had him as my child. Just like your daughter, the lessons they taught all of those around them is more than ten lifetimes. Caitlin will always be with you , as Gary Jr is always with me. God bless you all.
Oh, Maryanne. As I prayed for Caitlin, please know I now pray for you.
Our thoughts and prayers are with u at this awful sad time we don’t really know what to say except we are so sorry we love both Cus Chris & lyn
We are so saddened to hear this news. Our deepest sympathy goes out to you, Maryanne and Nick and the rest of your family. To be expecting and having that miracle so close for you to have it taken away is unbearable, I’m sure. Thank you for sharing this experience, which I’m sure is difficult. May you find peace and comfort in the support of your family and friends and the wonderful stories to be shared.
Just yesterday I woke up with a beautiful vision of Caitlin sitting up and smiling. I believe she is at peace now, free of so many limitations, forever with you. I wish I could wrap you all up in my arms and hold you. Love, Leslie, Bob and family.
Oh, Maryanne, I’ve no words to express how deeply sorry I am that this great soul had to leave here so soon. Sinead knows the truth. Stay close to Sinead, and to each other.
WIth all my love and sorrow,
Jane
I am so deeply sorry to hear about Caitlin, Maryanne. Caitlin was, and remains, the most authentic voice in the Friends of the Prouty Garden, advocating for the importance of love, caring, and compassion as the most important qualities to guide actions to help those facing difficult medical challenges. She will be deeply missed and always remembered with love and respect..
Gus
Maryanne and Nick- Jim and I were shocked
to hear this incredibly sad news. We know she will be missed more than words can say and more than hearts should feel. May you all be surrounded by the love and prayers of many
family and friends . Xo
Our heart aches for you and your family. Keeping you all in our thoughts and prayers during this most difficult time. Much Love. Melissa & Family
So sorry for your loss. I know how this feels my son passed away in 2014 because he didn’t get a chance for a heart transplant. I think Facebook helps a lot of people get the organs they need.Whatever happened to the transplant list?
Fly high my friend
You are such an inspiration
Thank you for sharing your life and your incredible fight with us strangers. I will hold you and your family in my heart ❤️
Soare high with the Angels dear girl
I am so deeply sorry for your loss. My love and prayers are with you. I went to Fay with Caitlin a long, long time ago but was a year younger. Caitlin was always someone I admired for her ability to be herself and not care what others thought. She was an angel on earth and an angel in heaven now.